@Article{info:doi/10.2196/25404,
author="Sabgul, Abdulnasir Afnan
and Qattan, N. Ameerah M.
and Hashmi, Rubayyat
and Al-Hanawi, Khaled Mohammed",
title="Husbands' Knowledge of Breast Cancer and Their Wives' Attitudes and Practices Related to Breast Cancer Screening in Saudi Arabia: Cross-sectional Online Survey",
journal="J Med Internet Res",
year="2021",
month="Feb",
day="25",
volume="23",
number="2",
pages="e25404",
keywords="attitude",
keywords="breast cancer",
keywords="husbands",
keywords="knowledge",
keywords="Saudi Arabia",
keywords="screening",
abstract="Background: Despite Saudi Arabia's free and well-established cancer care program, breast cancer incidence and mortality are rising. Husbands' knowledge, and wives' attitudes and practices related to breast cancer screening are not well understood in Saudi Arabia. Objective: The aim of this study was to investigate husbands' knowledge, and wives' attitudes and practices related to breast cancer screening in Saudi Arabia. Methods: This cross-sectional study collected data from 403 husbands in the holy city of Makkah through an online self-reported questionnaire over a period of 2 months, from May 6 to July 7, 2020. Tabulation, bivariate, and multiple regression analyses were the major tools used for data analysis. Multivariate logistic regressions were used to examine the association between husbands' knowledge and wives' behavior regarding breast cancer screening methods. Results: Husbands' knowledge score (a 1-point increase) was significantly associated with the wives' utilization of mammograms (adjusted odds ratio [AOR] 1.089, 95\% CI 1.024-1.159) and breast self-examination (AOR 1.177, 95\% CI 1.105-1.255). Husbands' knowledge also influenced the wives' attitudes toward learning about breast self-examination (AOR 1.138, 95\% CI 1.084-1.195). There was no significant association between husbands' knowledge and wives' utilization of clinical breast examination. However, richer husbands showed a socioeconomic gradient concerning their wives' utilization of clinical breast examinations (AOR 2.603, 95\% CI 1.269-5.341). Conclusions: Overall, husbands' knowledge of breast cancer influences wives' attitudes and practices related to breast cancer screening methods in Saudi Arabia. Thus, interventions delivered to husbands might increase breast cancer awareness and survival. ",
doi="10.2196/25404",
url="https://www.jmir.org/2021/2/e25404",
url="http://www.ncbi.nlm.nih.gov/pubmed/33629959"
}


@Article{info:doi/10.2196/25184,
author="Sato, Ann
and Haneda, Eri
and Suganuma, Nobuyasu
and Narimatsu, Hiroto",
title="Preliminary Screening for Hereditary Breast and Ovarian Cancer Using a Chatbot Augmented Intelligence Genetic Counselor: Development and Feasibility Study",
journal="JMIR Form Res",
year="2021",
month="Feb",
day="5",
volume="5",
number="2",
pages="e25184",
keywords="artificial intelligence",
keywords="augmented intelligence",
keywords="hereditary cancer",
keywords="familial cancer",
keywords="IBM Watson",
keywords="preliminary screening",
keywords="cancer",
keywords="genetics",
keywords="chatbot",
keywords="screening",
keywords="feasibility",
abstract="Background: Breast cancer is the most common form of cancer in Japan; genetic background and hereditary breast and ovarian cancer (HBOC) are implicated. The key to HBOC diagnosis involves screening to identify high-risk individuals. However, genetic medicine is still developing; thus, many patients who may potentially benefit from genetic medicine have not yet been identified. Objective: This study's objective is to develop a chatbot system that uses augmented intelligence for HBOC screening to determine whether patients meet the National Comprehensive Cancer Network (NCCN) BRCA1/2 testing criteria. Methods: The system was evaluated by a doctor specializing in genetic medicine and certified genetic counselors. We prepared 3 scenarios and created a conversation with the chatbot to reflect each one. Then we evaluated chatbot feasibility, the required time, the medical accuracy of conversations and family history, and the final result. Results: The times required for the conversation were 7 minutes for scenario 1, 15 minutes for scenario 2, and 16 minutes for scenario 3. Scenarios 1 and 2 met the BRCA1/2 testing criteria, but scenario 3 did not, and this result was consistent with the findings of 3 experts who retrospectively reviewed conversations with the chatbot according to the 3 scenarios. A family history comparison ascertained by the chatbot with the actual scenarios revealed that each result was consistent with each scenario. From a genetic medicine perspective, no errors were noted by the 3 experts. Conclusions: This study demonstrated that chatbot systems could be applied to preliminary genetic medicine screening for HBOC. ",
doi="10.2196/25184",
url="https://formative.jmir.org/2021/2/e25184",
url="http://www.ncbi.nlm.nih.gov/pubmed/33544084"
}


@Article{info:doi/10.2196/22061,
author="Kabukye, K. Johnblack
and Ilozumba, Onaedo
and Broerse, W. Jacqueline E.
and de Keizer, Nicolette
and Cornet, Ronald",
title="Implementation of an Interactive Voice Response System for Cancer Awareness in Uganda: Mixed Methods Study",
journal="JMIR Mhealth Uhealth",
year="2021",
month="Jan",
day="26",
volume="9",
number="1",
pages="e22061",
keywords="telemedicine",
keywords="medical oncology",
keywords="health promotion",
keywords="low-and-middle-income countries",
keywords="participatory research",
keywords="mobile phone",
abstract="Background: Cancer awareness is crucial for cancer care and prevention. However, cancer awareness in Uganda is low, and access to cancer information is limited. Objective: This study aims to (1) understand the cancer awareness situation in Uganda (perceptions, beliefs, information needs, and challenges to accessing cancer information) and opinions about interactive voice response (IVR) systems; (2) develop cancer awareness messages and implement them in an IVR system; and (3) evaluate user acceptance and use of the IVR system. Methods: A participatory design approach was adopted. To understand cancer awareness needs and challenges, 3 interviews and 7 focus group discussions (FGDs) were conducted with cancer health care providers, patients with cancer, caregivers and survivors, administrators, and lay citizens (n=73). On the basis of the resulting qualitative data, audio messages addressing cancer information needs were developed and implemented in an IVR system. The system and messages were tested with users (n=12) during 2 co-design workshops before final rollout. Finally, the system was evaluated over 6 months after going live, using call records and user feedback from telephone interviews with callers (n=40). Results: The cancer information needs included general topics such as what cancer is, what causes it, cancer screening and diagnosis, cancer treatment, and practical information on what to expect during cancer care. There were also myths and misconceptions that need to be addressed, such as that cancer is due to witchcraft and has no treatment. Information on COVID-19 was also sought after following the outbreak. We developed 20 audio cancer messages (approximately 2 minutes each) in English and Luganda, along with 14 IVR navigation instructions. These were implemented in an IVR system with 24/7 availability from all over Uganda via a toll-free multi-channel telephone number. The total number of calls made to the IVR system 6 months after going live was 3820. Of these, 2437 (63.8\%) lasted at least 30 seconds and were made from 1230 unique telephone numbers. There were 191 voice messages and 760 calls to live agents, most of which (681/951, 71.6\%) were in Luganda. Call volumes peaked following advertisement of the system and lockdowns due to COVID-19. Participants were generally familiar with IVR technology, and caller feedback was largely positive. Cited benefits included convenience, toll-free access, and detailed information. Recommendations for improvement of the system included adding live agents and marketing of the system to target users. Conclusions: IVR technology provides an acceptable and accessible method for providing cancer information to patients and the general public in Uganda. However, a need remains for health system reforms to provide additional cancer information sources and improve cancer care services in general. ",
doi="10.2196/22061",
url="http://mhealth.jmir.org/2021/1/e22061/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33496672"
}


@Article{info:doi/10.2196/24414,
author="Terra, Lara
and Hooning, J. Maartje
and Heemskerk-Gerritsen, M. Bernadette A.
and van Beurden, Marc
and Roeters van Lennep, E. Jeanine
and van Doorn, C. Helena
and de Hullu, A. Joanne
and Mom, Constantijne
and van Dorst, L. Eleonora B.
and Mourits, E. Marian J.
and Slangen, M. Brigitte F.
and Gaarenstroom, N. Katja
and Zillikens, Carola M.
and Leiner, Tim
and van der Kolk, Lizet
and Collee, Margriet
and Wevers, Marijke
and Ausems, M. Margreet G. E.
and van Engelen, Klaartje
and Berger, PV Lieke
and van Asperen, J. Christi
and Gomez-Garcia, B. Encarna
and van de Beek, Irma
and Rookus, A. Matti
and Hauptmann, Michael
and Bleiker, M. Eveline
and Schagen, B. Sanne
and Aaronson, K. Neil
and Maas, M. Angela H. E.
and van Leeuwen, E. Flora",
title="Long-Term Morbidity and Health After Early Menopause Due to Oophorectomy in Women at Increased Risk of Ovarian Cancer: Protocol for a Nationwide Cross-Sectional Study With Prospective Follow-Up (HARMOny Study)",
journal="JMIR Res Protoc",
year="2021",
month="Jan",
day="22",
volume="10",
number="1",
pages="e24414",
keywords="risk-reducing salpingo-oophorectomy",
keywords="BRCA1/2",
keywords="cardiovascular disease",
keywords="osteoporosis",
keywords="cognition",
keywords="health-related quality of life",
abstract="Background: BRCA1/2 mutation carriers are recommended to undergo risk-reducing salpingo-oophorectomy (RRSO) at 35 to 45 years of age. RRSO substantially decreases ovarian cancer risk, but at the cost of immediate menopause. Knowledge about the potential adverse effects of premenopausal RRSO, such as increased risk of cardiovascular disease, osteoporosis, cognitive dysfunction, and reduced health-related quality of life (HRQoL), is limited. Objective: The aim of this study is to assess the long-term health effects of premenopausal RRSO on cardiovascular disease, bone health, cognitive functioning, urological complaints, sexual functioning, and HRQoL in women with high familial risk of breast or ovarian cancer. Methods: We will conduct a multicenter cross-sectional study with prospective follow-up, nested in a nationwide cohort of women at high familial risk of breast or ovarian cancer. A total of 500 women who have undergone RRSO before 45 years of age, with a follow-up period of at least 10 years, will be compared with 250 women (frequency matched on current age) who have not undergone RRSO or who have undergone RRSO at over 55 years of age. Participants will complete an online questionnaire on lifestyle, medical history, cardiovascular risk factors, osteoporosis, cognitive function, urological complaints, and HRQoL. A full cardiovascular assessment and assessment of bone mineral density will be performed. Blood samples will be obtained for marker analysis. Cognitive functioning will be assessed objectively with an online neuropsychological test battery. Results: This study was approved by the institutional review board in July 2018. In February 2019, we included our first participant. As of November 2020, we had enrolled 364 participants in our study. Conclusions: Knowledge from this study will contribute to counseling women with a high familial risk of breast/ovarian cancer about the long-term health effects of premenopausal RRSO. The results can also be used to offer health recommendations after RRSO. Trial Registration: ClinicalTrials.gov NCT03835793; https://clinicaltrials.gov/ct2/show/NCT03835793. International Registered Report Identifier (IRRID): DERR1-10.2196/24414 ",
doi="10.2196/24414",
url="http://www.researchprotocols.org/2021/1/e24414/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33480862"
}


@Article{info:doi/10.2196/18767,
author="Lee, Jooyun
and Park, Hyeoun-Ae
and Park, Ki Seul
and Song, Tae-Min",
title="Using Social Media Data to Understand Consumers' Information Needs and Emotions Regarding Cancer: Ontology-Based Data Analysis Study",
journal="J Med Internet Res",
year="2020",
month="Dec",
day="7",
volume="22",
number="12",
pages="e18767",
keywords="social media",
keywords="ontology",
keywords="cancer",
keywords="health information needs",
keywords="cancer information",
keywords="emotion",
abstract="Background: Analysis of posts on social media is effective in investigating health information needs for disease management and identifying people's emotional status related to disease. An ontology is needed for semantic analysis of social media data. Objective: This study was performed to develop a cancer ontology with terminology containing consumer terms and to analyze social media data to identify health information needs and emotions related to cancer. Methods: A cancer ontology was developed using social media data, collected with a crawler, from online communities and blogs between January 1, 2014 and June 30, 2017 in South Korea. The relative frequencies of posts containing ontology concepts were counted and compared by cancer type. Results: The ontology had 9 superclasses, 213 class concepts, and 4061 synonyms. Ontology-driven natural language processing was performed on the text from 754,744 cancer-related posts. Colon, breast, stomach, cervical, lung, liver, pancreatic, and prostate cancer; brain tumors; and leukemia appeared most in these posts. At the superclass level, risk factor was the most frequent, followed by emotions, symptoms, treatments, and dealing with cancer. Conclusions: Information needs and emotions differed according to cancer type. The observations of this study could be used to provide tailored information to consumers according to cancer type and care process. Attention should be paid to provision of cancer-related information to not only patients but also their families and the general public seeking information on cancer. ",
doi="10.2196/18767",
url="http://www.jmir.org/2020/12/e18767/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33284127"
}


@Article{info:doi/10.2196/17771,
author="Garg, Ria
and Rebi{\'c}, Nevena
and De Vera, A. Mary",
title="Information Needs About Cancer Treatment, Fertility, and Pregnancy: Qualitative Descriptive Study of Reddit Threads",
journal="JMIR Cancer",
year="2020",
month="Dec",
day="2",
volume="6",
number="2",
pages="e17771",
keywords="cancer treatment",
keywords="health information",
keywords="oncofertility",
keywords="fertility",
keywords="pregnancy",
keywords="reproduction",
keywords="social support",
abstract="Background: A reproductive health implication of the increasing incidence of cancer among women is the impact of cancer treatment on fertility. Objective: As patients are increasingly using the internet, particularly online forums, to seek and share experiences, our objective was to understand information needs about cancer treatment, fertility, and pregnancy of women with cancer as well as their caregivers. Methods: We searched threads (original posts and responses) on four subreddit sites of Reddit (``r/Cancer,'' ``r/TryingForABaby,'' ``r/BabyBumps,'' and ``r/Infertility'') over a 5?year period between February 4th, 2014 and February 4th, 2019. Threads with original posts involving a lived experience or question regarding cancer treatment and female fertility and/or pregnancy or parenting/having children from the perspective of either patient or caregiver were included in our analysis. We analyzed threads using thematic analysis. Results: From 963 Reddit threads identified, 69 were analyzed, including 56 with original posts by women with cancer and 13 with original posts by caregivers. From threads made by patients, we identified themes on becoming a part of an online community, impacts of cancer treatment and fertility concerns on self and social relationships, making family planning decisions, and experiences with medical team. We also identified a theme on the impact of cancer treatment and fertility concerns on caregivers. Conclusions: Reddit provided a rich pool of data for analyzing the information needs of women facing cancer. Our findings demonstrate the far-reaching impacts of cancer treatment and fertility on physical, mental, and psychosocial health for both patients and their caregivers. ",
doi="10.2196/17771",
url="http://cancer.jmir.org/2020/2/e17771/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33263547"
}


@Article{info:doi/10.2196/20510,
author="Thiessen, Maclean
and Sinclair, Shane
and Tang, A. Patricia
and Raffin Bouchal, Shelley",
title="Information Access and Use by Patients With Cancer and Their Friends and Family: Development of a Grounded Theory",
journal="J Med Internet Res",
year="2020",
month="Oct",
day="29",
volume="22",
number="10",
pages="e20510",
keywords="persons",
keywords="personal autonomy",
keywords="patient-centered care",
keywords="health education",
keywords="health information--seeking behavior",
keywords="grounded theory",
keywords="empowerment",
keywords="cancer",
keywords="qualitative research",
keywords="adaptation, psychological",
keywords="mobile phone",
abstract="Background: Information has been identified as a commonly unmet supportive care need for those living with cancer (ie, patients and their friends and family). The information needed to help individuals plan their lives around the consequences of cancer, such as the receipt of health care, is an example of an important informational need. A suitable theory to guide the development of interventions designed to meet this informational need has not been identified by the authors. Objective: The aim of this study is to generate a grounded theory capable of guiding the development of interventions designed to assist those living with cancer in meeting their informational needs. Methods: Classic grounded theory was used to analyze data collected through digitally recorded one-on-one audio interviews with 31 patients with cancer and 29 friends and family members. These interviews focused on how the participants had accessed and used information to plan their lives and what barriers they faced in obtaining and using this information. Results: The theory that emerged consisted of 4 variables: personal projects, cancer as a source of disruption to personal projects, information as the process of accessing and interpreting cancer-related data (CRD) to inform action, and CRD quality as defined by accessibility, credibility, applicability, and framing. CRD quality as a moderator of personal project disruption by cancer is the core concept of this theory. Conclusions: Informational resources providing accessible, credible, applicable, and positively framed CRD are likely key to meeting the information needs of those affected by cancer. Web-based informational resources delivering high-quality CRD focused on assisting individuals living with cancer in maintaining and planning their personal projects are predicted to improve quality of life. Research is needed to develop and integrate resources informed by this theoretical framework into clinical practice. ",
doi="10.2196/20510",
url="http://www.jmir.org/2020/10/e20510/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33118940"
}


@Article{info:doi/10.2196/16138,
author="Xie, Juan
and Xie, Shi
and Cheng, Ying
and He, Zhe",
title="Beliefs and Information Seeking in Patients With Cancer in Southwest China: Survey Study",
journal="JMIR Cancer",
year="2020",
month="Aug",
day="21",
volume="6",
number="2",
pages="e16138",
keywords="cancer information seeking",
keywords="cancer belief",
keywords="fatalism",
keywords="southwest China",
abstract="Background: Although previous studies have reported the cancer information-seeking behaviors among patients in high-income countries, the cancer information-seeking practices of patients living in low- and middle-income areas are less known. Objective: This study investigated the beliefs and information-seeking patterns of cancer patients in southwest China. Methods: A questionnaire was designed, and data were collected in two hospitals (N=285) in southwest China. Statistical analyses included bivariate analyses and regressions. Results: Patients' attitudes towards cancer fatalism were significantly influenced by marital status (P<.001), education (P<.001), and household income (P<.001). Moreover, endorsing fatalistic belief was positively associated with age (r=0.35, P<.001). The regression model showed that younger patients (odds ratio [OR] 0.96, 95\% CI 0.93-0.99) and those with higher education (OR 1.75, 95\% CI 1.09-2.81) were more likely to seek information. Additionally, patients who were less confident in getting information were more likely to find information (OR 1.70, 95\% CI 1.15-2.52), while fatalism belief was not significant in the regression (OR 0.65, 95\% CI 0.22-1.95). Conclusions: This study explored the information-seeking patterns of cancer patients in southwest China. It was found that many Chinese people endorsed cancer fatalism. These pessimistic beliefs about the potential to prevent and to cure cancer correlate with rather than cause cancer-related information seeking. However, self-efficacy about the confidence in finding needed cancer information was a significant predictor of information-seeking. ",
doi="10.2196/16138",
url="http://cancer.jmir.org/2020/2/e16138/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32821061"
}


@Article{info:doi/10.2196/18779,
author="Park, Kyung Bu
and Kim, Yoon Ji
and Rogers, E. Valerie",
title="Development and Usability Evaluation of a Facebook-Based Intervention Program for Childhood Cancer Patients: Mixed Methods Study",
journal="J Med Internet Res",
year="2020",
month="Jul",
day="28",
volume="22",
number="7",
pages="e18779",
keywords="pediatric cancer patients",
keywords="childhood cancer",
keywords="social network site",
keywords="Facebook",
keywords="usability",
abstract="Background: Childhood cancers previously considered to be incurable now have 5-year survival rates up to 84\%. Nevertheless, these patients remain at risk of morbidity and mortality from therapy-related complications. Thus, patient education and self-management strategies for promoting a healthy lifestyle are of tantamount importance for improving short- and long-term health outcomes. A Facebook-based ``Healthy Teens for Soaam'' (a Korean term for childhood cancers) program was developed to help improve knowledge and self-management practices of teens with cancer related to their disease and treatment. Objective: The two-fold purpose of this usability study was (1) to describe the process of developing an 8-week Facebook-based intervention program for teens with cancer, and (2) to evaluate its usability to refine the program. Methods: Multiple phases and methods were employed to develop and evaluate the usability of the program. Study phases included: (1) needs assessment through focus group interviews and qualitative content analysis, (2) development of module content, (3) expert review and feedback on module content, (4) Facebook-based program development, (5) usability evaluation by heuristic evaluation, (6) usability evaluation by targeted end-user testing, and (7) modification and final version of the program. Usability of the final version was confirmed through feedback loops of these phases. Results: Based on 6 focus group discussion sessions, it was determined that teens with cancer were interested in seeing stories of successful childhood cancer cases and self-management after discharge, and preferred multimedia content over text. Therefore, each Facebook module was redesigned to include multimedia materials such as relevant video clips tailored for teens. Usability assessed by heuristic evaluation and user testing revealed several critical usability issues, which were then revised. Potential end users tested the final program and perceived it to be usable and useful for teens with cancer. Conclusions: To our knowledge, ``Healthy Teens for Soaam'' is the first Facebook-based intervention program for teens with cancer. We actively worked with current childhood cancer patients and survivors to develop and improve this program, achieved good usability, and met the expressed needs and preferences of target end users. This 8-week Facebook-based educational program for teens with cancer, developed as the first step of an upcoming intervention study, will be useful for improving knowledge and self-management strategies of teens. ",
doi="10.2196/18779",
url="http://www.jmir.org/2020/7/e18779/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32720897"
}


@Article{info:doi/10.2196/15539,
author="Marthick, Michael
and Janssen, Anna
and Cheema, S. Birinder
and Alison, Jennifer
and Shaw, Tim
and Dhillon, Haryana",
title="Feasibility of an Interactive Patient Portal for Monitoring Physical Activity, Remote Symptom Reporting, and Patient Education in Oncology: Qualitative Study",
journal="JMIR Cancer",
year="2019",
month="Nov",
day="28",
volume="5",
number="2",
pages="e15539",
keywords="physical activity",
keywords="patient Web portals",
keywords="neoplasms",
abstract="Background: Digital health interventions, such as the use of patient portals, have been shown to offer benefits to a range of patients including those with a diagnosis of cancer. Objective: This study aimed to explore the participant experience and perception of using an interactive Web-based portal for monitoring physical activity, remote symptom reporting, and delivering educational components. Methods: Participants who were currently under treatment or had recently completed intensive treatment for cancer were recruited to three cohorts and invited to join a Web-based portal to enhance their physical activity. Cohort 1 received Web portal access and an activity monitor; cohort 2 had additional summative messaging; and cohort 3 had additional personalized health coaching messaging. Following the 10-week intervention, participants were invited to participate in a semistructured interview. Interview recordings were transcribed and evaluated using qualitative thematic analysis. Results: A total of 17 semistructured interviews were carried out. Participants indicated that using the Web portal was feasible. Personalized messaging improved participant perceptions of the value of the intervention. There was a contrast between cohorts and levels of engagement with increasing health professional contact leading to an increase in engagement. Educational material needs to be tailored to the participants' cancer treatment status, health literacy, and background. Conclusions: Participants reported an overall positive experience using the Web portal and that personalized messaging positively impacted on their health behaviors. Future studies should focus more on design of interventions, ensuring appropriate tailoring of information and personalization of behavioral support messaging. International Registered Report Identifier (IRRID): RR2-10.2196/9586 ",
doi="10.2196/15539",
url="http://cancer.jmir.org/2019/2/e15539/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31778123"
}


@Article{info:doi/10.2196/15787,
author="Bibault, Jean-Emmanuel
and Chaix, Benjamin
and Guillemass{\'e}, Arthur
and Cousin, Sophie
and Escande, Alexandre
and Perrin, Morgane
and Pienkowski, Arthur
and Delamon, Guillaume
and Nectoux, Pierre
and Brouard, Beno{\^i}t",
title="A Chatbot Versus Physicians to Provide Information for Patients With Breast Cancer: Blind, Randomized Controlled Noninferiority Trial",
journal="J Med Internet Res",
year="2019",
month="Nov",
day="27",
volume="21",
number="11",
pages="e15787",
keywords="chatbot",
keywords="clinical trial",
keywords="cancer",
abstract="Background: The data regarding the use of conversational agents in oncology are scarce. Objective: The aim of this study was to verify whether an artificial conversational agent was able to provide answers to patients with breast cancer with a level of satisfaction similar to the answers given by a group of physicians. Methods: This study is a blind, noninferiority randomized controlled trial that compared the information given by the chatbot, Vik, with that given by a multidisciplinary group of physicians to patients with breast cancer. Patients were women with breast cancer in treatment or in remission. The European Organisation for Research and Treatment of Cancer Quality of Life Group information questionnaire (EORTC QLQ-INFO25) was adapted and used to compare the quality of the information provided to patients by the physician or the chatbot. The primary outcome was to show that the answers given by the Vik chatbot to common questions asked by patients with breast cancer about their therapy management are at least as satisfying as answers given by a multidisciplinary medical committee by comparing the success rate in each group (defined by a score above 3). The secondary objective was to compare the average scores obtained by the chatbot and physicians for each INFO25 item. Results: A total of 142 patients were included and randomized into two groups of 71. They were all female with a mean age of 42 years (SD 19). The success rates (as defined by a score >3) was 69\% (49/71) in the chatbot group versus 64\% (46/71) in the physicians group. The binomial test showed the noninferiority (P<.001) of the chatbot's answers. Conclusions: This is the first study that assessed an artificial conversational agent used to inform patients with cancer. The EORTC INFO25 scores from the chatbot were found to be noninferior to the scores of the physicians. Artificial conversational agents may save patients with minor health concerns from a visit to the doctor. This could allow clinicians to spend more time to treat patients who need a consultation the most. Trial Registration: Clinicaltrials.gov NCT03556813, https://tinyurl.com/rgtlehq ",
doi="10.2196/15787",
url="http://www.jmir.org/2019/11/e15787/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31774408"
}


@Article{info:doi/10.2196/14241,
author="Bender, L. Jacqueline
and Feldman-Stewart, Deb
and Tong, Christine
and Lee, Karen
and Brundage, Michael
and Pai, Howard
and Robinson, John
and Panzarella, Tony",
title="Health-Related Internet Use Among Men With Prostate Cancer in Canada: Cancer Registry Survey Study",
journal="J Med Internet Res",
year="2019",
month="Nov",
day="19",
volume="21",
number="11",
pages="e14241",
keywords="prostate cancer",
keywords="internet",
keywords="health decision making",
keywords="digital divide",
abstract="Background: After a prostate cancer diagnosis, men want information about their disease and treatment options. The internet offers a convenient means to deliver health information to patients with prostate cancer. However, there are concerns about the use of the internet among this largely senior population. Objective: This study aimed to determine the patterns and factors associated with the use of the internet as a source of health information among Canadian men with prostate cancer and the features and information required in a website. Methods: Population surveys were conducted in four Canadian provinces (British Columbia, Alberta, Saskatchewan, and Ontario) in 2014-2015. Data analyses included descriptive, bivariable, and multivariable analyses. The Pearson Chi-square and univariable regression were used to examine associations between independent variables and health-related internet use. Correlates of health-related internet use were analyzed using multivariable logistic regression. Results: A total of 1362 patients responded across the four provinces. The mean age of respondents was 69 years (SD 8.2). In addition, 82\% (n=1071) were internet users and 71\% (n=910) used the internet daily. Further, 65\% (n=784) used the internet as a source of prostate cancer information, and 40\% (n=521) were confident about using information obtained from the internet to make health decisions. Men who used the internet to obtain prostate cancer information were more likely to be active information seekers (odds ratio [OR]: 4.5, 95\% CI 2.6-7.8), be confident using information from the internet to make health decisions (OR: 3.6, 95\% CI 2.3-5.7), have broadband internet access (OR: 1.8, 95\% CI 1.2-2.7), and have more unmet supportive care needs (OR: 1.05, 95\% CI 1.0-1.1). Top features wanted in a website, reported by more than 50\% of respondents, were a library of resources (n=893, 65.6\%), tools to support treatment decision making (n=815, 59.8\%), and tools to help navigate the prostate cancer journey (n=698, 51.2\%). Top three topics of information wanted in such a website were treatment options (n=916, 67.3\%), disease progression (n=904, 66.4\%), and management of side effects (n=858, 63\%). Conclusions: Over two-thirds of Canadian patients with prostate cancer surveyed use the internet as a source of health information about prostate cancer, but over half did not feel confident using information from the internet to make health decisions. Being an active information seeker, having confidence in using information from the internet to make health decisions, having broadband internet, and having more unmet supportive care needs were significantly associated with health-related internet use. Future work should examine electronic health literacy interventions as a means to boost men's confidence in using information from the internet and design websites that include information and features that help men navigate the prostate cancer journey and support treatment decision making and management of side effects. ",
doi="10.2196/14241",
url="http://www.jmir.org/2019/11/e14241/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31742561"
}


@Article{info:doi/10.2196/16690,
author="Kushniruk, Andre",
title="The Importance of Health Information on the Internet: How It Saved My Life and How it Can Save Yours",
journal="J Med Internet Res",
year="2019",
month="Oct",
day="27",
volume="21",
number="10",
pages="e16690",
keywords="patient journey",
keywords="human factors",
keywords="consumer health informatics",
keywords="eHealth",
keywords="digital health",
keywords="participatory medicine",
keywords="shared decision-making",
keywords="cancer information",
keywords="tongue cancer",
doi="10.2196/16690",
url="http://www.jmir.org/2019/10/e16690/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31661084"
}


@Article{info:doi/10.2196/14407,
author="Nguyen, Hao Minh
and Smets, A. Ellen M.
and Bol, Nadine
and Loos, F. Eug{\`e}ne
and van Laarhoven, M. Hanneke W.
and Geijsen, Debby
and van Berge Henegouwen, I. Mark
and Tytgat, J. Kristien M. A.
and van Weert, M. Julia C.",
title="Tailored Web-Based Information for Younger and Older Patients with Cancer: Randomized Controlled Trial of a Preparatory Educational Intervention on Patient Outcomes",
journal="J Med Internet Res",
year="2019",
month="Oct",
day="1",
volume="21",
number="10",
pages="e14407",
keywords="Web-based tailoring",
keywords="internet",
keywords="audiovisual media",
keywords="patient education",
keywords="cancer",
keywords="aging",
keywords="memory",
keywords="anxiety",
keywords="patient reported outcomes",
keywords="patient participation",
keywords="consultation",
keywords="health communication",
keywords="randomized controlled trial",
abstract="Background: Many patients with cancer, including older patients (aged ?65 years), consult the Web to prepare for their doctor's visit. In particular, older patients have varying needs regarding the mode in which information is presented (eg, via textual, visual, or audiovisual modes) owing to age-related sensory (eg, impaired vision and hearing) and cognitive decline (eg, reduced processing speed). Therefore, Web-based information targeted at older patient populations is likely to be used and processed more effectively, and evaluated more positively, when tailored to age-related capabilities and preferences. This, in turn, may benefit patient outcomes. Objective: This randomized controlled trial tested the effects of a Web-based tailored educational intervention among newly diagnosed younger (<65 years) and older (?65 years) patients with cancer. We compared the intervention group who viewed a mode-tailored website (ie, enabling patients to tailor information using textual, visual, and audiovisual modes) with 3 control groups view a nontailored website (ie, text only, text with images, and text with videos). We examined website experience outcomes (ie, website satisfaction, website involvement, knowledge, anxiety, and communication self-efficacy) and consultation experience outcomes (ie, question asking during consultation, anxiety, and information recall). Methods: Patients from a multidisciplinary outpatient clinic (N=232) viewed a mode-tailored or nontailored website as preparation before their hospital consultations to discuss diagnosis and treatment. Data were collected before (T1), during (T2), and after (T3) visitation. Website experience outcomes were assessed with questionnaires (T1). Patients' question asking was coded from videotaped consultations, and anxiety was assessed through a questionnaire (T2). Telephone interviews were conducted to assess knowledge acquired from the website before (T1) and after consultation (T3), and information recall from the consultation (T3). Results: The preparatory website was well used across all conditions (mean 34 min). Younger patients viewing the mode-tailored website were more satisfied before consultation (P=.02) and reported lower anxiety after consultation (P=.046; vs text only). This pattern was not found in older patients. Mode tailoring yielded no other significant differences in patient outcomes. Regression analyses showed that website involvement (beta=.15; P=.03) and, to a lesser extent, website satisfaction (beta=.15; P=.05) positively associated with knowledge before consultation (T1). In turn, higher knowledge before consultation (beta=.39; P<.001), together with time on the website (beta=.21; P=.002; T1), predicted information recall from consultations (T3). Patients with higher knowledge before consultation (T1) also reported higher knowledge from the website afterward (T3; beta=.22; P=.003). Conclusions: Offering preparatory online information before consultations benefits information processing and patient outcomes of both younger and older newly diagnosed patients with cancer. Younger patients benefit even more when information is offered in a mode-tailored manner. We discuss the theoretical, methodological, and practical implications for patient-provider communication research in an electronic health era. Clinical Trial: Netherlands Trial Register NTR5904; https://www.trialregister.nl/trial/5750 ",
doi="10.2196/14407",
url="https://www.jmir.org/2019/10/e14407",
url="http://www.ncbi.nlm.nih.gov/pubmed/31573911"
}


@Article{info:doi/10.2196/13240,
author="Kobayashi, Rei
and Ishizaki, Masato",
title="Examining the Interaction Between Medical Information Seeking Online and Understanding: Exploratory Study",
journal="JMIR Cancer",
year="2019",
month="Sep",
day="24",
volume="5",
number="2",
pages="e13240",
keywords="consumer health informatics",
keywords="information-seeking behavior",
keywords="internet access",
keywords="health communication",
keywords="health literacy",
abstract="Background: Online information seeking on medical topics by patients can have beneficial effects by helping them decide on treatment options and fostering better relationships with doctors. The quality of websites and processes of seeking information online have mostly been studied, with a focus on the accuracy and reliability of websites; however, few studies have examined the relationship between other aspects of quality and the processes of seeking medical information online. Objective: This exploratory study aimed to shed light on the quality of websites used for information seeking from the perspective of understanding medical information in combination with seeking it online. Methods: The study participants were 15 Japanese university students with no problem using the internet. A questionnaire survey about health literacy (47 items on a 4-point Likert scale) and information navigation skills on the internet (8 items on a 5-point Likert scale) was conducted before participants engaged in online information seeking and qualitative interviews. The students searched for information on a disease and its treatment. The websites viewed were gathered from search behavior recorded by software and browser logs. Follow-up interviews were conducted to elicit explanations from the participants about the assignments and their views of online information seeking. The explanations were evaluated by 55 health care professionals on a 3-point Likert scale and then assessed based on their comments and the participant interviews. Results: The mean age of the participants was 20.6 years (median 21; SD 1.06). All participants were able to access reliable websites with information relevant to the assignments. The mean ratings of the students' explanations were 108.6 (median 109; range=83-134) for the disease and 105.6 (median 104; range=87-117) for its treatment. The inter-rater reliability were 0.84 (95\% CI 0.77-0.90) and 0.95 (95\% CI 0.93-0.97), indicating good and excellent, respectively. The mean of the sum of the health literacy skills was 115.1 (median 115; range=80-166) and the mean for information navigation skills was 25.9 (median 26; range=17-36), respectively. Health literacy and information navigation skills were moderately correlated (r=0.54; 95\% CI 0.033-0.822; P=.04). Among the four stages of health literacy, understanding and appraising (r=0.53; 95\% CI 0.025-0.820; P=.04) were moderately correlated with information navigation skills (r=0.52; 95\% CI 0.013-0.816; P=.046). The participants had no difficulties operating and browsing the internet and considered medical and public institution websites to be reliable; however, due to unfamiliarity with medical terms, they had difficulties choosing a site from the results obtained and comparing and synthesizing information provided by different sites. They also looked for sites providing orderly information in plain language but provided explanations from sites that gave inadequate interpretations of information. Conclusions: This study revealed interactions between searching the internet for, and understanding, medical information by analyzing the processes of information seeking online, physicians' evaluations and comments about the participants' explanations, and the participants' perceptions. ",
doi="10.2196/13240",
url="http://cancer.jmir.org/2019/2/e13240/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31586366"
}


@Article{info:doi/10.2196/14187,
author="Richards, Rebecca
and Kinnersley, Paul
and Brain, Kate
and Staffurth, John
and Wood, Fiona",
title="The Preferences of Patients With Cancer Regarding Apps to Help Meet Their Illness-Related Information Needs: Qualitative Interview Study",
journal="JMIR Mhealth Uhealth",
year="2019",
month="Jul",
day="31",
volume="7",
number="7",
pages="e14187",
keywords="education, medical",
keywords="medical information exchange",
keywords="smartphone",
keywords="mobile apps",
abstract="Background: The shift from inpatient to outpatient and community cancer care means that more patients with cancer need to manage their condition at home, without the direct supervision of their clinician. Subsequently, research has reported that many patients with cancer have unmet information needs during their illness. Mobile devices, such as mobile phones and tablet computers, provide an opportunity to deliver information to patients remotely. Before designing an app intervention to help patients with cancer to meet their information needs, in-depth qualitative research is required to gain an understanding of the views of the target users. Objective: We aimed to develop an app intervention to help patients meet their illness-related information needs in noninpatient settings. This study explored the information needs of patients with cancer and their preferences for an app and desired app features. Specifically, the perceived acceptability of an app, desired app features, and the potential benefits and disadvantages of, and barriers to, an app were explored. Methods: Qualitative, one-on-one semistructured interviews were conducted with patients with urological, colorectal, breast, or gynecological cancers (N=23) across two hospitals in South Wales. Interviews were audio-taped, transcribed, and analyzed using a thematic analysis. Results: Findings indicated that barriers to information exchange and understanding in consultations, and identification of reliable information sources between consultations, appeared to contribute to patients' unmet information needs. Consequently, app feature suggestions included a question prompt list, a glossary of cancer terms, a resources feature, and a contacts feature. Anticipated benefits of this type of app included a more informed patient, improved quality of life, decreased anxiety, and increased confidence to participate in their care. The anticipated barriers to app use are likely to be temporary or can be minimized with regard to these findings during app development and implementation. Conclusions: This study highlights the desire of patients with cancer for an app intervention to help them meet their information needs during and between consultations with their clinicians. This study also highlights the anticipated acceptability and benefits of this type of intervention; however, further research is warranted. ",
doi="10.2196/14187",
url="http://mhealth.jmir.org/2019/7/e14187/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31368446"
}


@Article{info:doi/10.2196/cancer.9798,
author="Camail, Roxane
and Kenfack, Bruno
and Tran, Lien Phuong
and Viviano, Manuela
and Tebeu, Pierre-Marie
and Temogne, Liliane
and Akaaboune, Mohamed
and Tincho, Eveline
and Mbobda, Joel
and Catarino, Rosa
and Vassilakos, Pierre
and Petignat, Patrick",
title="Benefit of Watching a Live Visual Inspection of the Cervix With Acetic Acid and Lugol Iodine on Women's Anxiety: Randomized Controlled Trial of an Educational Intervention Conducted in a Low-Resource Setting",
journal="JMIR Cancer",
year="2019",
month="May",
day="13",
volume="5",
number="1",
pages="e9798",
keywords="cervical cancer",
keywords="papillomavirus infections",
keywords="acetic acid",
keywords="Lugol's iodine",
keywords="anxiety",
abstract="Background: Women undergoing pelvic examination for cervical cancer screening can experience periprocedural anxiety. Objective: The aim of this study was to assess the anxiety level experienced by women undergoing a visual inspection with acetic acid and Lugol iodine (VIA and VILI) examination, with or without watching the procedure on a digital screen. Methods: This prospective randomized study took place in the district of Dschang, Cameroon. A previous cervical cancer screening campaign tested women aged between 30 and 49 years for human papillomavirus (HPV). HPV-positive women were invited for the 12-month follow-up control visit, including a VIA/VILI examination. During that visit, we recruited women to participate in this study. Before the examination, participants were randomized in a 1:1 ratio to a control group (CG) and an intervention group (IG). Women in both groups underwent a pelvic examination and were verbally informed about the steps undertaken during the gynecological examination. The IG could also?watch it live on a tablet screen. Women's anxiety was assessed before and immediately after the examination, using the Spielberger State-Trait Anxiety Inventory (STAI). A paired t test was used to compare the mean STAI score for each question before and after VIA/VILI while a nonpaired, 2-sided t test was used to compare the mean differences of the STAI score between the 2 study groups. Results: A total of 122 women were randomized in the study; 4 of them were excluded as they did not undergo the pelvic examination, did not answer to the second STAI questionnaire because of personal reasons, or the cervix could not be properly visualized. Thus, the final sample size consisted of 118 patients of whom 58 women were assigned to the CG and 60 to the IG. The mean age was 39.1 (SD 5.2) years. Before the examination, the mean (SD) STAI score was 33.6 (SD 10.9) in the CG and 36.4 (SD 11.8) in the IG (P=.17). The STAI score after pelvic examination was significantly reduced for both groups (CG: 29.3 [SD 11.2]; IG: 28.5 [SD 12.0]). Overall, the difference of the STAI scores before and after the pelvic examination was lower in the CG (4.2 [SD 9.0]) than in the IG (7.9 [SD 14.3]), although the difference was not significant (P=.10). However, the women's emotional state, such as I feel secure and I feel strained, was improved in the IG as compared with the CG (CG: P=.01; IG: P=.007). Conclusions: Watching the VIA/VILI procedure in real time improved the women's emotional state but did not reduce the periprocedural anxiety measured by the STAI score. Furthermore, larger studies should assess women's satisfaction with watching their pelvic examination in real time to determine whether this tool could be included in VIA/VILI routine practice. Trial Registration: ClinicalTrials.gov NCT02945111; http://clinicaltrials.gov/ct2/show/NCT02945111 ",
doi="10.2196/cancer.9798",
url="http://cancer.jmir.org/2019/1/e9798/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31094335"
}


@Article{info:doi/10.2196/12103,
author="Mohamad Marzuki, Fadhil Muhamad
and Yaacob, Azwany Nor
and bin Yaacob, Majdi Najib
and Abu Hassan, Radzi Muhammad
and Ahmad, Bariyah Shahrul",
title="Usable Mobile App for Community Education on Colorectal Cancer: Development Process and Usability Study",
journal="JMIR Hum Factors",
year="2019",
month="Apr",
day="16",
volume="6",
number="2",
pages="e12103",
keywords="colorectal cancer",
keywords="mobile app",
keywords="development",
keywords="mHealth",
abstract="Background: Participation in colorectal cancer screening is still low among Malaysians despite the increasing trend of incidence, with more than half of the new cases being detected in the advanced stages. Knowledge improvement might increase screening participation and thus improve the chances of disease detection. With the advancement of communication technology, people nowadays prefer to read from their mobile phone using a Web browser or mobile apps compared with the traditional printed material. Therefore, health education and promotion should adapt this behavior change in educating the community. Objective: This study aimed to document the process of designing and developing a mobile app for community education on colorectal cancer and assess the usability of the prototype. Methods: The nominal group technique (NGT) was used for the content development of the mobile app. NGT involving community educationists and clinicians combined with community representatives as the target users identified relevant health information and communication strategies including features for a user-friendly mobile app. The prototype was developed using framework Ionic 1, based on the Apache Cordova and Angular JS (Google). It was published in the Google Play store. In total, 50 mobile phone users aged 50 years and above and who had never been diagnosed with any type of cancer were invited to download and use the app. They were asked to assess the usability of the app using the validated Malay version of System Usability Scale Questionnaire for the Assessment of Mobile Apps questionnaire. The One-sample t test was used to assess the usability score with a cut-off value of 68 for the usable mobile app. Results: The Colorectal Cancer Awareness Application (ColorApp) was successfully developed in the local Malay language. The NGT discussion had suggested 6 main menus in the ColorApp prototype, which are Introduction, Sign and Symptoms, Risk Factors, Preventive Measures, Colorectal Cancer Screening Program, and immunochemical fecal occult blood test kit. A total of 2 additional artificial intelligence properties menus were added to allow user-ColorApp interaction: Analyze Your Status and ColorApp Calculator. The prototype has been published in the Google Play store. The mean usability score was 72 (SD 11.52), which indicates that ColorApp is a usable mobile app, and it can be used as a tool for community education on colorectal cancer. Conclusions: ColorApp mobile app can be used as a user-friendly tool for community education on colorectal cancer. ",
doi="10.2196/12103",
url="http://humanfactors.jmir.org/2019/2/e12103/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30990454"
}


@Article{info:doi/10.2196/12480,
author="Lama, Yuki
and Hu, Dian
and Jamison, Amelia
and Quinn, Crouse Sandra
and Broniatowski, A. David",
title="Characterizing Trends in Human Papillomavirus Vaccine Discourse on Reddit (2007-2015): An Observational Study",
journal="JMIR Public Health Surveill",
year="2019",
month="Mar",
day="18",
volume="5",
number="1",
pages="e12480",
keywords="papillomavirus infections",
keywords="prevention \& control",
keywords="cancer prevention",
keywords="cervical cancer",
keywords="HPV",
keywords="vaccination",
keywords="papillomavirus vaccines",
keywords="immunology",
keywords="administration \& dosage",
keywords="social media",
keywords="health communication",
keywords="infodemiology",
abstract="Background: Despite the introduction of the human papillomavirus (HPV) vaccination as a preventive measure in 2006 for cervical and other cancers, uptake rates remain suboptimal, resulting in preventable cancer mortality. Social media, widely used for information seeking, can influence users' knowledge and attitudes regarding HPV vaccination. Little is known regarding attitudes related to HPV vaccination on Reddit (a popular news aggregation site and online community), particularly related to cancer risk and sexual activity. Examining HPV vaccine--related messages on Reddit may provide insight into how HPV discussions are characterized on forums online and influence decision making related to vaccination. Objective: We observed how the HPV vaccine is characterized on Reddit over time and by user gender. Specifically, this study aimed to determine (1) if Reddit messages are more related to cancer risks or sexual behavior and (2) what other HPV vaccine--related discussion topics appear on Reddit. Methods: We gathered all public Reddit comments from January 2007 to September 2015. We manually annotated 400 messages to generate keywords and identify salient themes. We then measured the similarity between each comment and lists of keywords associated with sexual behavior and cancer risk using Latent Semantic Analysis (LSA). Next, we used Latent Dirichlet Allocation (LDA) to characterize remaining topics within the Reddit data. Results: We analyzed 22,729 messages containing the strings hpv or human papillomavirus and vaccin. LSA findings show that HPV vaccine discussions are significantly more related to cancer compared with sexual behavior from 2008 to 2015 (P<.001). We did not find a significant difference between genders in discussions of cancer and sexual activity (P>.05). LDA analyses demonstrated that although topics related to cancer risk and sexual activity were both frequently discussed (16.1\% and 14.5\% of word tokens, respectively), the majority of online discussions featured other topics. The most frequently discussed topic was politics associated with the vaccine (17.2\%). Other topics included HPV disease and/or immunity (13.5\%), the HPV vaccine schedule (11.5\%), HPV vaccine side effects (9.7\%), hyperlinks to outside sources (9.1\%), and the risks and benefit of HPV vaccination (8.5\%). Conclusions: Reddit discourse on HPV vaccine encompasses a broad range of topics among men and women, with HPV political debates and cancer risk making up the plurality of the discussion. Our findings demonstrated that women and men both discussed HPV, highlighting that Reddit users do not perceive HPV as an issue that only pertains to women. Given the increasing use of social media as a source of health information, these results can inform the development of targeted online health communication strategies to promote HPV vaccination to young adult users of Reddit. Analyzing online discussions on Reddit can inform health communication efforts by identifying relevant, important HPV-related topics among online communities. ",
doi="10.2196/12480",
url="http://publichealth.jmir.org/2019/1/e12480/"
}


@Article{info:doi/10.2196/10348,
author="George, C. Goldy
and Iwuanyanwu, C. Eucharia
and Buford, S. Adrianna
and Piha-Paul, A. Sarina
and Subbiah, Vivek
and Fu, Siqing
and Karp, D. Daniel
and Pant, Shubham
and Hinojosa, O. Christina
and Hess, R. Kenneth
and Cleeland, S. Charles
and Bernstam, V. Elmer
and Meric-Bernstam, Funda
and Hong, S. David",
title="Cancer-Related Internet Use and Its Association With Patient Decision Making and Trust in Physicians Among Patients in an Early Drug Development Clinic: A Questionnaire-Based Cross-Sectional Observational Study",
journal="J Med Internet Res",
year="2019",
month="Mar",
day="14",
volume="21",
number="3",
pages="e10348",
keywords="cancer",
keywords="clinical trial",
keywords="doctor",
keywords="early-phase clinical trial",
keywords="internet",
keywords="patient",
keywords="physician",
keywords="patient-physician relationship",
keywords="symptoms",
abstract="Background: The role of cancer-related internet use on the patient-physician relationship has not been adequately explored among patients who are cancer-related internet users (CIUs) in early-phase clinical trial clinics. Objective: We examined the association between cancer-related internet use and the patient-physician relationship and decision making among CIUs in an early drug development clinic. Methods: Of 291 Phase I clinic patients who completed a questionnaire on internet use, 179 were CIUs. Generations were defined by the year of patient's birth: ``millennials'' (after 1990) and ``Generation X/Y'' (1965-1990) grouped as ``Millennials or Generation X/Y''; ``Baby Boomers'' (1946-1964); and ``Greatest or Silent Generation'' (1945 and earlier). Statistical analyses included the Wilcoxon matched-pairs signed-rank test and the Mann-Whitney U test. Results: CIUs were 52\% (94/179) female, 44\% (78/179) were older than 60 years, and 60\% (108/179) had household incomes exceeding US \$60,000. The sources of information on cancer and clinical trials included physicians (171/179, 96\%), the internet (159/179, 89\%), and other clinical trial personnel (121/179, 68\%). For the overall sample and each generation, the median values for trust in referring and Phase I clinical trial physicians among early drug development clinic CIUs were 5 on a 0-5 scale, with 5 indicating ``complete trust.'' CIUs' trust in their referring (5) and phase 1 (5) physicians was higher than CIUs' trust in Web-based cancer-related information (3; P<.001 for both). CIUs who reported visiting the National Cancer Institute (NCI) website, NCI.org, to learn about cancer reported higher levels of trust in Web-based cancer-related information than CIUs who did not use the NCI website (P=.02). Approximately half of CIUs discussed internet information with their doctor. Only 14\% (23/165) of CIUs had asked their physician to recommend cancer-related websites, and 24\% (35/144) of CIUs reported at least occasional conflict between their physician's advice and Web-based information. Conclusions: Despite the plethora of websites related to cancer and cancer clinical trials, patients in early-phase clinical trial settings trust their physicians more than Web-based information. Cancer-related organizations should provide regularly updated links to trustworthy websites with cancer and clinical trial information for patients and providers and educate providers on reliable cancer websites so that they can better direct their patients to appropriate internet content. ",
doi="10.2196/10348",
url="https://www.jmir.org/2019/3/e10348/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30869638"
}


@Article{info:doi/10.2196/10932,
author="Moradian, Saeed
and Krzyzanowska, K. Monika
and Maguire, Roma
and Morita, P. Plinio
and Kukreti, Vishal
and Avery, Jonathan
and Liu, Geoffrey
and Cafazzo, Joseph
and Howell, Doris",
title="Usability Evaluation of a Mobile Phone--Based System for Remote Monitoring and Management of Chemotherapy-Related Side Effects in Cancer Patients: Mixed-Methods Study",
journal="JMIR Cancer",
year="2018",
month="Dec",
day="21",
volume="4",
number="2",
pages="e10932",
keywords="mobile apps",
keywords="mobile health",
keywords="mobile phone",
keywords="patient-centered care",
keywords="patient remote monitoring",
keywords="self-care",
keywords="symptom management",
keywords="usability testing",
abstract="Background: As most chemotherapy is administered in the outpatient setting, patients are required to manage related side effects at home without direct support from health professionals. The Advanced Symptom Management System (ASyMS) has been developed to facilitate the remote monitoring and management of chemotherapy-related toxicity in patients with cancer, using patient-reported outcomes questionnaires and a clinician alerting system. Objective: This study aims to evaluate the usability of the ASyMS, a mobile phone--based technology, from the perspective of Canadian patients with cancer receiving chemotherapy to identify existing design, functionality, and usability issues and elicit their views, experiences, and satisfaction with the ASyMS. Methods: We used a mixed-method approach to data collection with user-based testing, a think-aloud technique, semistructured interviews, and short answer questionnaires with a purposive sample of 10 patients with cancer. Participants attended usability testing sessions at the Centre for Global eHealth Innovation, University Health Network, and performed specific tasks on the ASyMS device. The test was videorecorded and each task was timed during the test. After the usability sessions, participants completed a posttest questionnaire and participated in a semistructured qualitative interview. A thematic analysis was used to code and categorize the identified issues into themes that summarized the type and frequency of occurrence. Results: The thematic analysis generated 3 overarching themes as follows: ASyMS user-friendliness; usefulness of ASyMS (content quality and richness); and intention to use. Results from the posttest questionnaire indicated that 80\% (8/10) of participants had great motivation to use the ASyMS, 70\% (7/10) had positive perceptions of the successful use of the ASyMS, and all (10/10, 100\%) had a positive attitude toward using the ASyMS in the future. Most identified design and functionality issues were related to the navigation of the ASyMS device and a desire for a more attractive design with advanced functionality and features. The main general design recommendations were as follows: enhance the readability of the screen; implement advance options (eg, search option); and support better navigation. Conclusions: The ASyMS has shown positive perceptions of patients in usability testing and qualitative interviews. An evaluation of the effects of the ASyMS on symptom outcomes in a clinical trial is needed. ",
doi="10.2196/10932",
url="http://cancer.jmir.org/2018/2/e10932/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30578238"
}


@Article{info:doi/10.2196/11073,
author="Biancovilli, Priscila
and Jurberg, Claudia",
title="How to Optimize Health Messages About Cancer on Facebook: Mixed-Methods Study",
journal="JMIR Cancer",
year="2018",
month="Dec",
day="18",
volume="4",
number="2",
pages="e11073",
keywords="cancer",
keywords="content analysis",
keywords="Facebook",
keywords="health",
keywords="software",
abstract="Background: Incidence rate of cancer is increasing worldwide, with longer life expectancy being one of the main causes. Yet, between 30\% and 50\% of cancer cases are preventable, and early detection contributes to a better prognosis. This makes health communication strategies essential. Facebook, the world's most used social networking site in 2017 and 2018, can be a useful tool for disseminating powerful messages on health promotion, prevention, and early detection. Objective: We aimed to (1) offer ways of optimizing health messages about cancer on Facebook, focusing on topics, such as risk factors, prevention, treatment, early diagnosis, and cure, and (2) investigate which aspects of these messages generate greater engagement. Methods: To verify what generates greater engagement in topics related to cancer on Facebook, we analyzed 16 Brazilian pages with the main theme of cancer. We performed a manual analysis of texts, content, and engagement rates. Finally, we developed a software program to operationalize the analysis of Facebook posts. The tool we devised aims to automate the analysis of any Facebook page with cancer as the main theme. Results: We analyzed 712 posts over a 1-month period. We divided the posts into the following 8 categories: ``Testimonies or real-life stories,'' ``Solidarity,'' ``Anniversaries,'' ``Science and health,'' ``Events,'' ``Institutional,'' ``Risk factors,'' and ``Beauty.'' The pages were also organized into groups according to the type of profile to which they belonged (ie, hospitals or foundations, informative, nongovernmental organizations, and personal pages).The results showed that the categories generating greater engagement in Brazil were not those with the highest percentage of cancer-related content. For instance, in the ``Informative'' group the ``Testimonies or real-life stories'' category generated an engagement of 79.5\%. However, only 9.5\% (25/261) of the content within the relevant time period dealt with such topics. Another example concerns the category ``Science and health.'' Despite being the one with the highest number of posts (129/261, 49.4\%), it scored 5th in terms of engagement. This investigation served as the basis for the development of a tool designed to automate the analysis of Facebook pages. The list of categories and keywords generated by this analysis was employed to feed the system, which was then able to categorize posts appearing on a Facebook page. We tested the system on 163 posts and only 34 were classified incorrectly, which amounts to a 20.8\% error rate (79.2\% accuracy). Conclusions: The analysis we conducted by categorizing posts and calculating engagement rates shows that the potential of Facebook pages is often underutilized. This occurs because the categories that generate the greatest engagement are often not those most frequently used. The software developed in this research may help administrators of cancer-related pages analyze their posts more easily and increase public interest as a result. ",
doi="10.2196/11073",
url="http://cancer.jmir.org/2018/2/e11073/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30563821"
}


@Article{info:doi/10.2196/10031,
author="Ogasawara, Ryo
and Katsumata, Noriyuki
and Toyooka, Tatsushi
and Akaishi, Yuko
and Yokoyama, Takaaki
and Kadokura, Gemmu",
title="Reliability of Cancer Treatment Information on the Internet: Observational Study",
journal="JMIR Cancer",
year="2018",
month="Dec",
day="17",
volume="4",
number="2",
pages="e10031",
keywords="internet",
keywords="cancer treatment",
keywords="clinical practice guideline",
keywords="mobile phone",
abstract="Background: Finding the correct medical information in a flood of information from the internet is a significant issue for patients with cancer. Objective: We investigated the reliability of the information on cancer treatment methods available on the internet based on an evaluation by medical oncologists, medical students, and cancer survivors. Methods: Using Google and Yahoo as the search engines, we carried out the information search using 2 keywords, ``cancer treatment'' and ``cancer cure,'' and the top 20 information sites were identified. A similar search was conducted on 5 types of cancer. The reliability of the information presented was rated on a 3-level scale (A, B, or C). Level A referred to reliable sites (providing information complying with the clinical practice guidelines for various types of cancer), Level B included sites not falling under either Level A or Level C, and Level C comprised dangerous or harmful sites (providing information on treatment not approved by the regulatory authority in Japan and bombastic advertisements without any relevant clinical evidence). The evaluation was conducted by medical oncologists, medical students, and cancer survivors. The consistency of the information reliability level rating between the medical students or cancer survivors with that of the medical oncologists was assessed by using the kappa value. Results: A total of 247 sites were evaluated for reliability. The ratings provided by the medical students' group were as follows: Level A, 12.1\% (30/247); Level B, 56.3\% (139/247); and Level C, 31.6\% (78/247). The ratings provided by the cancer survivors' group were as follows: Level A, 16.8\% (41/244); Level B, 44.7\% (109/244); and Level C, 38.5\% (94/244). The ratings provided by the oncologists' group were as follows: Level A, 10.1\% (25/247); Level B, 51.4\% (127/247); and Level C, 38.5\% (95/247). The intergroup rating consistency between the medical students' group and oncologists' group was 87.4\% (216/247, kappa=0.77) and that between the cancer survivors' group and oncologists' group was 76.2\% (186/244, kappa=0.61). Conclusions: Of the investigated sites providing information on cancer treatment on the internet, the percentage of sites that seemed to provide harmful information was much higher than that of sites providing reliable information. The reliability level rating was highly consistent between the medical students' group and the medical oncologists' group and also between the cancer survivors' group and the medical oncologists' group. ",
doi="10.2196/10031",
url="http://cancer.jmir.org/2018/2/e10031/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30559090"
}


@Article{info:doi/10.2196/10026,
author="Richards, Rebecca
and Kinnersley, Paul
and Brain, Kate
and McCutchan, Grace
and Staffurth, John
and Wood, Fiona",
title="Use of Mobile Devices to Help Cancer Patients Meet Their Information Needs in Non-Inpatient Settings: Systematic Review",
journal="JMIR Mhealth Uhealth",
year="2018",
month="Dec",
day="14",
volume="6",
number="12",
pages="e10026",
keywords="cell phone",
keywords="smartphone",
keywords="computers, handheld",
keywords="cancer",
keywords="neoplasms",
keywords="patients",
keywords="information dissemination",
keywords="consumer health information",
abstract="Background: The shift from inpatient to outpatient cancer care means that patients are now required to manage their condition at home, away from regular supervision by clinicians. Subsequently, research has consistently reported that many patients with cancer have unmet information needs during their illness. Mobile devices, such as mobile phones and tablet computers, provide an opportunity to deliver information to patients remotely. To date, no systematic reviews have evaluated how mobile devices have been used specifically to help patients meet to their information needs. Objective: A systematic review was conducted to identify studies that describe the use of mobile interventions to enable patients with cancer meet their cancer-related information needs in non-inpatient settings, and to describe the effects and feasibility of these interventions. Methods: MEDLINE, Embase, and PsycINFO databases were searched up until January 2017. Search terms related to ``mobile devices,'' ``information needs,'' and ``cancer'' were used. There were no restrictions on study type in order to be as inclusive as possible. Study participants were patients with cancer undergoing treatment. Interventions had to be delivered by a mobile or handheld device, attempt to meet patients' cancer-related information needs, and be for use in non-inpatient settings. Critical Appraisal Skills Programme checklists were used to assess the methodological quality of included studies. A narrative synthesis was performed and findings were organized by common themes found across studies. Results: The initial search yielded 1020 results. We included 23 articles describing 20 studies. Interventions aimed to improve the monitoring and management of treatment-related symptoms (17/20, 85\%), directly increase patients' knowledge related to their condition (2/20, 10\%), and improve communication of symptoms to clinicians in consultations (1/20, 5\%). Studies focused on adult (17/20; age range 24-87 years) and adolescent (3/20; age range 8-18 years) patients. Sample sizes ranged from 4-125, with 13 studies having 25 participants or fewer. Most studies were conducted in the United Kingdom (12/20, 52\%) or United States (7/20, 30\%). Of the 23 articles included, 12 were of medium quality, 9 of poor quality, and 2 of good quality. Overall, interventions were reported to be acceptable and perceived as useful and easy to use. Few technical problems were encountered. Adherence was generally consistent and high (periods ranged from 5 days to 6 months). However, there was considerable variation in use of intervention components within and between studies. Reported benefits of the interventions included improved symptom management, patient empowerment, and improved clinician-patient communication, although mixed findings were reported for patients' health-related quality of life and anxiety. Conclusions: The current review highlighted that mobile interventions for patients with cancer are only meeting treatment or symptom-related information needs. There were no interventions designed to meet patients' full range of cancer-related information needs, from information on psychological support to how to manage finances during cancer, and the long-term effects of treatment. More comprehensive interventions are required for patients to meet their information needs when managing their condition in non-inpatient settings. Controlled evaluations are needed to further determine the effectiveness of these types of intervention. ",
doi="10.2196/10026",
url="https://mhealth.jmir.org/2018/12/e10026/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30552082"
}


@Article{info:doi/10.2196/10676,
author="Br{\"u}tting, Julia
and Steeb, Theresa
and Reinhardt, Lydia
and Berking, Carola
and Meier, Friedegund",
title="Exploring the Most Visible German Websites on Melanoma Immunotherapy: A Web-Based Analysis",
journal="JMIR Cancer",
year="2018",
month="Dec",
day="13",
volume="4",
number="2",
pages="e10676",
keywords="melanoma",
keywords="immunotherapy",
keywords="internet",
keywords="patient education",
keywords="quality",
keywords="readability",
keywords="websites",
keywords="reliability",
keywords="information",
abstract="Background: Patients diagnosed with melanoma frequently search the internet for treatment information, including novel and complex immunotherapy. However, health literacy is limited among half of the German population, and no assessment of websites on melanoma treatment has been performed so far. Objective: The aim of this study was to identify and assess the most visible websites in German language on melanoma immunotherapy. Methods: In accordance with the common Web-based information-seeking behavior of patients with cancer, the first 20 hits on Google, Yahoo, and Bing were searched for combinations of German synonyms for ``melanoma'' and ``immunotherapy'' in July 2017. Websites that met our predefined eligibility criteria were considered for assessment. Three reviewers independently assessed their quality by using the established DISCERN tool and by checking the presence of quality certification. Usability and reliability were evaluated by the LIDA tool and understandability by the Patient Education Materials Assessment Tool (PEMAT). The Flesch Reading Ease Score (FRES) was calculated to estimate the readability. The ALEXA and SISTRIX tools were used to investigate the websites' popularity and visibility. The interrater agreement was determined by calculating Cronbach alpha. Subgroup differences were identified by t test, U test, or one-way analysis of variance. Results: Of 480 hits, 45 single websites from 30 domains were assessed. Only 2 website domains displayed a German quality certification. The average assessment scores, mean (SD), were as follows: DISCERN, 48 (7.6); LIDA (usability), 40 (2.0); LIDA (reliability), 10 (1.6); PEMAT, 69\% (16\%); and FRES, 17 (14), indicating mediocre quality, good usability, and understandability but low reliability and an even very low readability of the included individual websites. SISTRIX scores ranged from 0 to 6872 and ALEXA scores ranged from 17 to 192,675, indicating heterogeneity of the visibility and popularity of German website domains providing information on melanoma immunotherapy. Conclusions: Optimization of the most accessible German websites on melanoma immunotherapy is desirable. Especially, simplification of the readability of information and further adaption to reliability criteria are required to support the education of patients with melanoma and laypersons, and to enhance transparency. ",
doi="10.2196/10676",
url="https://cancer.jmir.org/2018/2/e10676/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30545808"
}


@Article{info:doi/10.2196/11006,
author="Collado-Borrell, Roberto
and Escudero-Vilaplana, Vicente
and Calles, Antonio
and Garcia-Martin, Estela
and Marzal-Alfaro, Belen
and Gonzalez-Haba, Eva
and Herranz-Alonso, Ana
and Sanjurjo-Saez, Maria",
title="Oncology Patient Interest in the Use of New Technologies to Manage Their Disease: Cross-Sectional Survey",
journal="J Med Internet Res",
year="2018",
month="Oct",
day="23",
volume="20",
number="10",
pages="e11006",
keywords="eHealth",
keywords="app",
keywords="information and communication technologies",
keywords="oncology patient",
abstract="Background: Information and communication technologies (ICTs) in oncology can revolutionize the medical care of cancer patients. ICTs can promote patients' empowerment and real-time disease monitoring. There is limited information about the impact of ICTs in cancer patients or their level of interest in using these tools for greater management of their condition. Objective: This study aimed to understand the ICT usage profile in hematology-oncology patients to identify their needs and determine their level of interest in these technologies as a means of managing their disease. Methods: A 28-item questionnaire was drawn up by a multidisciplinary team including pharmacists and oncologists. The questions were organized into 3 blocks, which were as follows: block A---sociodemographic characteristics; block B---use of ICTs when searching for health-related information; and block C---usage preferences for health apps. Hematology-oncology patients receiving treatment between May and July 2017 were included. A paper copy of the questionnaire was handed over to patients in either the day hospital or the pharmaceutical care consultancy in pharmacy services. Results: A total of 650 questionnaires were handed out, with a participation of 94.0\% (611/650). Patient sociodemographic characteristics were as follows: mean age was 57.8 years (age range: 19-91). Of 611 participants, 40.7\% (249/611) had a university education, and 45.1\% (276/611) of participants reported their overall state of health to be good. Results from use of ICTs when searching for health-related information were as follows: 87.1\% (532/611) of participants were interested in being informed about health-related matters. Of all participants, 75.5\% (532/611) sought information from health professionals and 61.3\% (375/611) on the internet. Before going to their doctor's appointment, 21.8\% (133/611) of patients looked up information about their disease or treatment on the internet. This access to the internet rose to 50.9\% (311/611) after their first medical appointment with their oncologist. Usage preferences for health apps were as follows: 82.7\% (505/611) had a smartphone, whereas 20.3\% (124/611) had a health app installed. Overall, 81.5\% (498/611) would use an app if their health professional recommended it to them, but 39.6\% (242/611) were not willing to pay for it. Conclusions: The hematology-oncology patients showed a great deal of interest in searching for health-related information by means of ICTs, especially using smartphones and apps. The issues that drew the most interest in terms of apps were appointment management, advice on disease management, and communication with health professionals. Free access to these features and the recommendation by a health professional are important factors when it comes to their use. Therefore, the health care provider is a key element in the recommendation of ICTs, providing their knowledge and experience concerning their correct usage. ",
doi="10.2196/11006",
url="http://www.jmir.org/2018/10/e11006/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30355554"
}


@Article{info:doi/10.2196/11515,
author="Chen, Liang
and Wang, Xiaohui
and Peng, Tai-Quan",
title="Nature and Diffusion of Gynecologic Cancer--Related Misinformation on Social Media: Analysis of Tweets",
journal="J Med Internet Res",
year="2018",
month="Oct",
day="16",
volume="20",
number="10",
pages="e11515",
keywords="social media",
keywords="breast cancer",
keywords="cervical cancer",
keywords="misinformation",
keywords="diffusion",
keywords="China",
abstract="Background: Over the last two decades, the incidence and mortality rates of gynecologic cancers have increased at a constant rate in China. Gynecologic cancers have become one of the most serious threats to women's health in China. With the widespread use of social media, an increasing number of individuals have employed social media to produce, seek, and share cancer-related information. However, health information on social media is not always accurate. Health, and especially cancer-related, misinformation has been widely spread on social media, which can affect individuals' attitudinal and behavioral responses to cancer. Objective: The aim of this study was to examine the nature and diffusion of gynecologic cancer--related misinformation on Weibo, the Chinese equivalent of Twitter. Methods: A total of 2691 tweets related to 2 gynecologic cancers---breast cancer and cervical cancer---posted on Weibo from June 2015 to June 2016 were extracted using the Python Web Crawler. Two medical school graduate students with expertise in gynecologic diseases were recruited to code the tweets to differentiate between true information and misinformation as well as to identify the types of falsehoods. The diffusion characteristics of gynecologic cancer--related misinformation were compared with those of the true information. Results: While most of the gynecologic cancer--related tweets provided medically accurate information, approximately 30\% of them were found to contain misinformation. Furthermore, it was found that tweets about cancer treatment contained a higher percentage of misinformation than prevention-related tweets. Nevertheless, the prevention-related misinformation diffused significantly more broadly and deeply than true information on social media. Conclusions: The findings of this study suggest the need for controlling and reducing the cancer-related misinformation on social media with the efforts from both service providers and medical professionals. More specifically, it is important to correct falsehoods related to the prevention of gynecologic cancers on social media and increase individuals' capacity to assess the veracity of Web-based information to curb the spread and thus minimize the consequences of cancer-related misinformation. ",
doi="10.2196/11515",
url="http://www.jmir.org/2018/10/e11515/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30327289"
}


@Article{info:doi/10.2196/10060,
author="Hillyer, Clarke Grace
and MacLean, A. Sarah
and Beauchemin, Melissa
and Basch, H. Corey
and Schmitt, M. Karen
and Segall, Leslie
and Kelsen, Moshe
and Brogan, L. Frances
and Schwartz, K. Gary",
title="YouTube Videos as a Source of Information About Clinical Trials: Observational Study",
journal="JMIR Cancer",
year="2018",
month="Jun",
day="26",
volume="4",
number="1",
pages="e10060",
keywords="clinical trial",
keywords="cancer clinical trial",
keywords="social media",
keywords="internet",
keywords="YouTube videos",
keywords="health information",
abstract="Background: Clinical trials are essential to the advancement of cancer treatment but fewer than 5\% of adult cancer patients enroll in a trial. A commonly cited barrier to participation is the lack of understanding about clinical trials. Objective: Since the internet is a popular source of health-related information and YouTube is the second most visited website in the world, we examined the content of the top 115 YouTube videos about clinical trials to evaluate clinical trial information available through this medium. Methods: YouTube videos posted prior to March 2017 were searched using selected keywords. A snowballing technique was used to identify videos wherein sequential screening of the autofill search results for each set of keywords was conducted. Video characteristics (eg, number of views and video length) were recorded. The content was broadly grouped as related to purpose, phases, design, safety and ethics, and participant considerations. Stepwise multivariable logistic regression analysis was conducted to assess associations between video type (cancer vs noncancer) and video characteristics and content. Results: In total, 115 videos were reviewed. Of these, 46/115 (40.0\%) were cancer clinical trials videos and 69/115 (60.0\%) were noncancer/general clinical trial videos. Most videos were created by health care organizations/cancer centers (34/115, 29.6\%), were oriented toward patients (67/115, 58.3\%) and the general public (68/115, 59.1\%), and were informational (79/115, 68.7\%); altruism was a common theme (31/115, 27.0\%). Compared with noncancer videos, cancer clinical trials videos more frequently used an affective communication style and mentioned the benefits of participation. Cancer clinical trial videos were also much more likely to raise the issue of costs associated with participation (odds ratio [OR] 5.93, 95\% CI 1.15-29.46) and advise patients to communicate with their physician about cancer clinical trials (OR 4.94, 95\% CI 1.39-17.56). Conclusions: Collectively, YouTube clinical trial videos provided information on many aspects of trials; however, individual videos tended to focus on selected topics with varying levels of detail. Cancer clinical trial videos were more emotional in style and positive in tone and provided information on the important topics of cost and communication. Patients are encouraged to verify and supplement YouTube video information in consultations with their health care professionals to obtain a full and accurate picture of cancer clinical trials to make an adequately informed decision about participation. ",
doi="10.2196/10060",
url="http://cancer.jmir.org/2018/1/e10060/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29945855"
}


@Article{info:doi/10.2196/resprot.7523,
author="Marsolo, Keith
and Shuman, William
and Nix, Jeremy
and Morrison, F. Caroline
and Mullins, L. Larry
and Pai, LH Ahna",
title="Reducing Parental Uncertainty Around Childhood Cancer: Implementation Decisions and Design Trade-Offs in Developing an Electronic Health Record-Linked Mobile App",
journal="JMIR Res Protoc",
year="2017",
month="Jun",
day="26",
volume="6",
number="6",
pages="e122",
keywords="electronic health records",
keywords="mobile apps",
keywords="uncertainty",
keywords="ethnographic design",
abstract="Background: Parents of children newly diagnosed with cancer are confronted with multiple stressors that place them at risk for significant psychological distress. One strategy that has been shown to help reduce uncertainty is the provision of basic information; however, families of newly diagnosed cancer patients are often bombarded with educational material. Technology has the potential to help families manage their informational needs and move towards normalization. Objective: The aim of this study was to create a mobile app that pulls together data from both the electronic health record (EHR) and vetted external information resources to provide tailored information to parents of newly diagnosed children as one method to reduce the uncertainty around their child's illness. This app was developed to be used by families in a National Institutes of Health (NIH)-funded randomized controlled trial (RCT) aimed at decreasing uncertainty and the subsequent psychological distress. Methods: A 2-phase qualitative study was conducted to elicit the features and content of the mobile app based on the needs and experience of parents of children newly diagnosed with cancer and their providers. Example functions include the ability to view laboratory results, look up appointments, and to access educational material. Educational material was obtained from databases maintained by the National Cancer Institute (NCI) as well as from groups like the Children's Oncology Group (COG) and care teams within Cincinnati Children's Hospital Medical Center (CCHMC). The use of EHR-based Web services was explored to allow data like laboratory results to be retrieved in real-time. Results: The ethnographic design process resulted in a framework that divided the content of the mobile app into the following 4 sections: (1) information about the patient's current treatment and other data from the EHR; (2) educational background material; (3) a calendar to view upcoming appointments at their medical center; and (4) a section where participants in the RCT document the study data. Integration with the NCI databases was straightforward; however, accessing the EHR Web services posed a challenge, though the roadblocks were not technical in nature. The lack of a formal, end-to-end institutional process for requesting Web service access and a mechanism to shepherd the request through all stages of implementation proved to be the biggest barrier. Conclusions: We successfully deployed a mobile app with a custom user interface that can integrate with the EHR to retrieve laboratory results and appointment information using vendor-provided Web services. Developers should expect to face hurdles when integrating with the EHR, but many of them can be addressed with frequent communication and thorough documentation. Executive sponsorship is also a key factor for success. Trial Registration: ClinicalTrials.gov NCT02505165; https://clinicaltrials.gov/ct2/show/NCT02505165 (Archived by WebCite at http://www.Webcitation.org/6r9ZSUgoT) ",
doi="10.2196/resprot.7523",
url="http://www.researchprotocols.org/2017/6/e122/",
url="http://www.ncbi.nlm.nih.gov/pubmed/28652227"
}


@Article{info:doi/10.2196/jmir.7508,
author="Huesch, Marco
and Chetlen, Alison
and Segel, Joel
and Schetter, Susann",
title="Frequencies of Private Mentions and Sharing of Mammography and Breast Cancer Terms on Facebook: A Pilot Study",
journal="J Med Internet Res",
year="2017",
month="Jun",
day="09",
volume="19",
number="6",
pages="e201",
keywords="Facebook",
keywords="online social network",
keywords="social media",
keywords="breast cancer screening",
keywords="mammography",
keywords="user comments",
keywords="websites",
keywords="links",
abstract="Background: The most popular social networking site in the United States is Facebook, an online forum where circles of friends create, share, and interact with each other's content in a nonpublic way. Objective: Our objectives were to understand (1) the most commonly used terms and phrases relating to breast cancer screening, (2) the most commonly shared website links that other women interacted with, and (3) the most commonly shared website links, by age groups. Methods: We used a novel proprietary tool from Facebook to analyze all of the more than 1.7 million unique interactions (comments on stories, reshares, and emoji reactions) and stories associated with breast cancer screening keywords that were generated by more than 1.1 million unique female Facebook users over the 1 month between November 15 and December 15, 2016. We report frequency distributions of the most popular shared Web content by age group and keywords. Results: On average, each of 59,000 unique stories during the month was reshared 1.5 times, commented on nearly 8 times, and reacted to more than 20 times by other users. Posted stories were most often authored by women aged 45-54 years. Users shared, reshared, commented on, and reacted to website links predominantly to e-commerce sites (12,200/1.7 million, 36\% of all the most popular links), celebrity news (n=8800, 26\%), and major advocacy organizations (n=4900, 15\%; almost all accounted for by the American Cancer Society breast cancer site). Conclusions: On Facebook, women shared and reacted to links to commercial and informative websites regarding breast cancer and screening. This information could inform patient outreach regarding breast cancer screening, indirectly through better understanding of key issues, and directly through understanding avenues for paid messaging to women authoring and reacting to content in this space. ",
doi="10.2196/jmir.7508",
url="http://www.jmir.org/2017/6/e201/",
url="http://www.ncbi.nlm.nih.gov/pubmed/28600279"
}


@Article{info:doi/10.2196/cancer.6933,
author="Papadakos, Janet
and Trang, Aileen
and Cyr, B. Alaina
and Abdelmutti, Nazek
and Giuliani, E. Meredith
and Snow, Michelle
and McCurdie, Tara
and Pulandiran, Menaka
and Urowitz, Sara
and Wiljer, David",
title="Deconstructing Cancer Patient Information Seeking in a Consumer Health Library Toward Developing a Virtual Information Consult for Cancer Patients and Their Caregivers: A Qualitative, Instrumental Case Study",
journal="JMIR Cancer",
year="2017",
month="May",
day="24",
volume="3",
number="1",
pages="e6",
keywords="patient education",
keywords="information-seeking behavior",
keywords="health literacy",
keywords="Internet",
keywords="consumer health information",
abstract="Background: Cancer patients and their caregivers want information about their disease and are interested in finding health information online. Despite the abundance of cancer information online, it is often fragmented, its quality is highly variable, and it can be difficult to navigate without expert-level knowledge of the cancer system. The Patient \& Family Library at the Princess Margaret Cancer Centre offers a broad collection of high-quality cancer health information and staff are available to help patrons refine their questions and explore information needs that they may not have considered. Objective: The purpose of this research study was to deconstruct patrons' information-seeking behaviors in the library to assess the feasibility of replicating the services provided in the library through a Web app, extending the service beyond the walls of the cancer centre. The specific aims of this research were to understand (1) how patrons approach information seeking in the library (interface design), (2) how patrons communicate their informational needs (information categorization and metadata requirements), and (3) what resources are provided to address the patrons' information needs (collection development). Methods: We employed a qualitative, instrumental case study to deconstruct patrons' health information-seeking behavior. The study population included patients, the librarian, and library volunteers. Ethnographic observation was conducted at the library over 3 days and key informant interviews with library staff were conducted to address the first aim. A closed card-sorting activity was conducted to address the second aim and the library shift logs and Search Request Forms (SRFs) were reviewed to address the third aim. Results: A total of 55 interactions were recorded during the ethnographic observation and nine semistructured interviews were conducted during the key informant interviews. Seven library patron personas were identified: (1) Newbie, (2) Seasoned, (3) Direct, (4) Window Shopper, (5) Collector, (6) Information Seeker, and (7) Distressed. A total of 83 participants completed the closed card-sorting exercise. The participants' conceptual clusters within the similarity matrix overlapped with the groupings created by the librarian, with a few differences. A total of 161 entries in the library shift log and 65 SRFs were analyzed to determine what resources were given to patrons. Most resources that patrons received were available online (61\%), although almost half of these required special access (47\%). Conclusions: The study findings suggest it is possible to replicate library functions in a Web app with a few exceptions that cannot be replicated online. These elements include access to journal articles or other content behind paywalls and the librarian's ability to encourage further discussion through empathy and active listening. Discussion with the librarian could serve to refine and predict needs through observing information seekers and to provide immediate connection to spiritual care and psychosocial support for patrons in distress. ",
doi="10.2196/cancer.6933",
url="http://cancer.jmir.org/2017/1/e6/",
url="http://www.ncbi.nlm.nih.gov/pubmed/28539305"
}


@Article{info:doi/10.2196/jmir.7087,
author="Lu, Yingjie
and Wu, Yang
and Liu, Jingfang
and Li, Jia
and Zhang, Pengzhu",
title="Understanding Health Care Social Media Use From Different Stakeholder Perspectives: A Content Analysis of an Online Health Community",
journal="J Med Internet Res",
year="2017",
month="Apr",
day="07",
volume="19",
number="4",
pages="e109",
keywords="health care social media",
keywords="stakeholder analysis",
keywords="topic analysis",
keywords="sentiment analysis",
abstract="Background: Health care social media used for health information exchange and emotional communication involves different types of users, including patients, caregivers, and health professionals. However, it is difficult to identify different stakeholders because user identification data are lacking due to privacy protection and proprietary interests. Therefore, identifying the concerns of different stakeholders and how they use health care social media when confronted with huge amounts of health-related messages posted by users is a critical problem. Objective: We aimed to develop a new content analysis method using text mining techniques applied in health care social media to (1) identify different health care stakeholders, (2) determine hot topics of concern, and (3) measure sentiment expression by different stakeholders. Methods: We collected 138,161 messages posted by 39,606 members in lung cancer, diabetes, and breast cancer forums in the online community MedHelp.org over 10 years (January 2007 to October 2016) as experimental data. We used text mining techniques to process text data to identify different stakeholders and determine health-related hot topics, and then analyzed sentiment expression. Results: We identified 3 significantly different stakeholder groups using expectation maximization clustering (3 performance metrics: Rand=0.802, Jaccard=0.393, Fowlkes-Mallows=0.537; P<.001), in which patients (24,429/39,606, 61.68\%) and caregivers (12,232/39,606, 30.88\%) represented the majority of the population, in contrast to specialists (2945/39,606, 7.43\%). We identified 5 significantly different health-related topics: symptom, examination, drug, procedure, and complication (Rand=0.783, Jaccard=0.369, Fowlkes-Mallows=0.495; P<.001). Patients were concerned most about symptom topics related to lung cancer (536/1657, 32.34\%), drug topics related to diabetes (1883/5904, 31.89\%), and examination topics related to breast cancer (8728/23,934, 36.47\%). By comparison, caregivers were more concerned about drug topics related to lung cancer (300/2721, 11.03\% vs 109/1657, 6.58\%), procedure topics related to breast cancer (3952/13,954, 28.32\% vs 5822/23,934, 24.33\%), and complication topics (4449/25,701, 17.31\% vs 4070/31,495, 12.92\%). In addition, patients (9040/36,081, 25.05\%) were more likely than caregivers (2659/18,470, 14.39\%) and specialists (17,943/83,610, 21.46\%) to express their emotions. However, patients' sentiment intensity score (2.46) was lower than those of caregivers (4.66) and specialists (5.14). In particular, for caregivers, negative sentiment scores were higher than positive scores (2.56 vs 2.18), with the opposite among specialists (2.62 vs 2.46). Overall, the proportion of negative messages was greater than that of positive messages related to symptom, complication, and examination. The pattern was opposite for drug and procedure topics. A trend analysis showed that patients and caregivers gradually changed their emotional state in a positive direction. Conclusions: The hot topics of interest and sentiment expression differed significantly among different stakeholders in different disease forums. These findings could help improve social media services to facilitate diverse stakeholder engagement for health information sharing and social interaction more effectively. ",
doi="10.2196/jmir.7087",
url="http://www.jmir.org/2017/4/e109/",
url="http://www.ncbi.nlm.nih.gov/pubmed/28389418"
}


@Article{info:doi/10.2196/cancer.5132,
author="Kirkovits, Thomas
and Schinkoethe, Timo
and Drewes, Caroline
and Gehring, Caroline
and Bauerfeind, Ingo
and Harbeck, Nadia
and Wuerstlein, Rachel",
title="eHealth in Modern Patient-Caregiver Communication: High Rate of Acceptance Among Physicians for Additional Support of Breast Cancer Patients During Long-Term Therapy",
journal="JMIR Cancer",
year="2016",
month="Sep",
day="19",
volume="2",
number="2",
pages="e14",
keywords="eHealth",
keywords="mobile health",
keywords="telemedicine",
keywords="physicians",
keywords="acceptance",
keywords="breast cancer",
keywords="patient compliance",
keywords="patient adherence",
abstract="Background: Lack of adherence and compliance with drug regimens among breast cancer patients represent substantial problems in oral therapies, leading to significant impacts on mortality. Where other systems have failed, electronic health (eHealth) could be a possible solution to improve medication intake, along with the doctor-patient relationship. Initial results from studies concerning new interventions for therapy support are promising, but reports suggest that general acceptance of new treatment support tools is needed among patients and physicians alike. Objective: The aim of this study was to investigate the actual use of the Internet and other modern media among physicians involved in breast cancer treatment. Methods: Using a standardized questionnaire, actual utilization of new media among physicians was analyzed. Internet-related behaviors in private, as well as in business life, were investigated. Attention was focused on physicians' opinions regarding modern eHealth tools and how patients could be best supported to enhance adherence. Results: A total of 120 physicians, all participating in breast cancer care, completed the questionnaire (median age 41 years). Almost all participants (99.2\%, 119/120) used the Internet for general purposes and 98.3\% (118/120) used it for medical issues as well. Virtually all medical professionals (99.2\%, 119/120) reported that they owned a computer, while more recently invented technologies such as tablets and smartphones were owned by 31.9\% (38/119) and 73.1\% (87/119), respectively. The Internet was favored by 66.4\% (79/119) of the physicians in our survey as a source for patient support; 71.2\% (84/118) would also favor modern media for side effect registration. Based on our analysis, the most frequent Internet-utilizing physicians were characterized by age <60, worked in a hospital, and were employed as a junior physician. Conclusions: This study demonstrated a high usage of Internet-related technologies among physicians, indicating that the use of eHealth for advanced and individualized support in breast cancer care is a promising addition to treatment management. Such technologies have the potential to enhance adherence and compliance in therapy among cancer patients. ",
doi="10.2196/cancer.5132",
url="http://cancer.jmir.org/2016/2/e14/",
url="http://www.ncbi.nlm.nih.gov/pubmed/28410173"
}


@Article{info:doi/10.2196/cancer.5711,
author="Drewes, Caroline
and Kirkovits, Thomas
and Schiltz, Daniel
and Schinkoethe, Timo
and Haidinger, Renate
and Goldmann-Posch, Ursula
and Harbeck, Nadia
and Wuerstlein, Rachel",
title="EHealth Acceptance and New Media Preferences for Therapy Assistance Among Breast Cancer Patients",
journal="JMIR Cancer",
year="2016",
month="Sep",
day="14",
volume="2",
number="2",
pages="e13",
keywords="eHealth",
keywords="mHealth",
keywords="breast cancer",
keywords="adherence",
keywords="compliance",
keywords="new media",
keywords="therapy improvement",
abstract="Background: Electronic health (eHealth) and mobile communication-based health care (mHealth) applications have been increasingly utilized in medicine over the last decade, and have facilitated improved adherence to therapy regimens in patients with chronic conditions. Due to the long duration of breast cancer therapy, and the long course of disease in metastatic breast cancer, a need for more intensified physician-patient communication has emerged. Various support mechanisms, including new media such as mHealth and eHealth, have been proposed for this purpose. Objective: The aim of this study was to analyze the correlation between sociodemographic factors, as well as health status of breast cancer patients, and their current utilization of new media, or their willingness to use Internet and mobile phone apps for improvement of therapy management. Methods: The survey for this study was conducted anonymously during the 2012 Mamazone Projekt Diplompatient meeting (Augsburg, Germany), which hosted approximately 375 participants per day. A total of 168 questionnaires were completed. The questionnaire aimed to assess sociodemographic status, disease patterns, and current use of new media (ie, Internet, mobile phone, and mobile phone apps) in breast cancer patients. Habits and frequency of use for these new technologies, as well as patients' affinity towards eHealth and mHealth tools for therapy management improvement, were investigated. Results: Almost all participants used the Internet (95.8\%, 161/168), with 91.5\% (151/165) also utilizing this technology for health-related issues. Approximately 23\% (38/168) of respondents owned a mobile phone. When asked about their preferences for therapy assistance, 67.3\% (113/168) of respondents were interested in assistance via the Internet, 25.0\% (42/168) via mobile phone, and 73.2\% (123/168) via call center. Patients diagnosed with breast cancer <5 years before the survey were significantly more interested in a call center than patients diagnosed >5 years before survey participation. Conclusions: The vast majority of breast cancer patients accept the Internet for therapy assistance, which indicates that eHealth is a promising medium to improve patient-physician communication. Such technologies may improve individual disease management and ultimately lead to an enhanced adherence to therapy regimens. ",
doi="10.2196/cancer.5711",
url="http://cancer.jmir.org/2016/2/e13/",
url="http://www.ncbi.nlm.nih.gov/pubmed/28410189"
}


@Article{info:doi/10.2196/resprot.5547,
author="Janssen, Anna
and Shaw, Tim
and Nagrial, Adnan
and Pene, Christopher
and Rabbets, Melanie
and Carlino, Matteo
and Zachulski, Clare
and Phillips, Jane
and Birnbaum, Robert
and Gandhi, Tejal
and Harnett, Paul",
title="An Online Learning Module to Increase Self-Efficacy and Involvement in Care for Patients With Advanced Lung Cancer: Research Protocol",
journal="JMIR Res Protoc",
year="2016",
month="Aug",
day="08",
volume="5",
number="3",
pages="e147",
keywords="patient education",
keywords="eHealth",
keywords="online learning",
keywords="lung cancer",
keywords="palliative care",
keywords="side-effect management",
keywords="patient safety and quality",
keywords="patient self-efficacy",
abstract="Background: Improving patient care for individuals with lung cancer is a priority due to the increasing burden of the disease globally. One way this can be done is by improving patient self-management capabilities through increasing their self-efficacy. This can improve positive outcomes for patients with chronic conditions and increase their ability to manage the challenges of such illnesses. Unfortunately, patients with chronic conditions often struggle to travel far from home to engage with patient education events, a common means of improving self-efficacy. The development of more accessible tools for improving patient self-efficacy is required to increase quality of life for patients with chronic conditions. Objective: To evaluate the feasibility of delivering symptom identification and management information to patients with advanced lung cancer using an online program. Methods: This article describes a pre-post test study to evaluate a Qstream online learning platform to improve patient self-efficacy for managing advanced lung cancer symptoms. Undertaking this program should increase participant knowledge about the side-effects they may experience as a result of their treatment and in turn increase help-seeking behavior and self-efficacy for the participant cohort. Quantitative data collected by the Qstream platform on the completion rates of participants will be used as a tool to evaluate the intervention. Additionally, validated scales will be used to collect data on patient self-efficacy. Qualitative data will also be collected via an exit survey and thematic content analysis of semi-structured interviews. Results: The research is in the preliminary stages but thus far a protocol has been approved in support of the project. Additionally, advisory committee members have been identified and initial meetings have been undertaken. Conclusions: Development of new approaches for increasing patient understanding of their care is important to ensure high quality care continues to be delivered in the clinical setting. ",
doi="10.2196/resprot.5547",
url="http://www.researchprotocols.org/2016/3/e147/",
url="http://www.ncbi.nlm.nih.gov/pubmed/27503206"
}


@Article{info:doi/10.2196/jmir.5618,
author="Bolle, Sifra
and Romijn, Geke
and Smets, A. Ellen M.
and Loos, F. Eugene
and Kunneman, Marleen
and van Weert, M. Julia C.",
title="Older Cancer Patients' User Experiences With Web-Based Health Information Tools: A Think-Aloud Study",
journal="J Med Internet Res",
year="2016",
month="Jul",
day="25",
volume="18",
number="7",
pages="e208",
keywords="user experience",
keywords="eHealth",
keywords="usability",
keywords="think aloud",
keywords="aging",
keywords="cancer",
abstract="Background: Health information is increasingly presented on the Internet. Several Web design guidelines for older Web users have been proposed; however, these guidelines are often not applied in website development. Furthermore, although we know that older individuals use the Internet to search for health information, we lack knowledge on how they use and evaluate Web-based health information. Objective: This study evaluates user experiences with existing Web-based health information tools among older (? 65 years) cancer patients and survivors and their partners. The aim was to gain insight into usability issues and the perceived usefulness of cancer-related Web-based health information tools. Methods: We conducted video-recorded think-aloud observations for 7 Web-based health information tools, specifically 3 websites providing cancer-related information, 3 Web-based question prompt lists (QPLs), and 1 values clarification tool, with colorectal cancer patients or survivors (n=15) and their partners (n=8) (median age: 73; interquartile range 70-79). Participants were asked to think aloud while performing search, evaluation, and application tasks using the Web-based health information tools. Results: Overall, participants perceived Web-based health information tools as highly useful and indicated a willingness to use such tools. However, they experienced problems in terms of usability and perceived usefulness due to difficulties in using navigational elements, shortcomings in the layout, a lack of instructions on how to use the tools, difficulties with comprehensibility, and a large amount of variety in terms of the preferred amount of information. Although participants frequently commented that it was easy for them to find requested information, we observed that the large majority of the participants were not able to find it. Conclusions: Overall, older cancer patients appreciate and are able to use cancer information websites. However, this study shows the importance of maintaining awareness of age-related problems such as cognitive and functional decline and navigation difficulties with this target group in mind. The results of this study can be used to design usable and useful Web-based health information tools for older (cancer) patients. ",
doi="10.2196/jmir.5618",
url="http://www.jmir.org/2016/7/e208/",
url="http://www.ncbi.nlm.nih.gov/pubmed/27457709"
}


@Article{info:doi/10.2196/jmir.4914,
author="Nicolaije, AH Kim
and Ezendam, PM Nicole
and Pijnenborg, MA Johanna
and Boll, Dorry
and Vos, Caroline Maria
and Kruitwagen, FPM Roy
and van de Poll-Franse, V. Lonneke",
title="Paper-Based Survivorship Care Plans May be Less Helpful for Cancer Patients Who Search for Disease-Related Information on the Internet: Results of the Registrationsystem Oncological Gynecology (ROGY) Care Randomized Trial",
journal="J Med Internet Res",
year="2016",
month="Jul",
day="08",
volume="18",
number="7",
pages="e162",
keywords="Survivorship Care Plan",
keywords="Internet use",
keywords="pragmatic cluster randomized trial",
keywords="endometrial neoplasms",
keywords="patient-reported outcomes",
keywords="information provision",
abstract="Background: The Institute of Medicine recommends Survivorship Care Plans (SCPs) for all cancer survivors. However, it is unclear whether certain patient groups may or may not benefit from SCPs. Objective: The aim was to assess whether the effects of an automatically generated paper SCP on patients' satisfaction with information provision and care, illness perceptions, and health care utilization were moderated by disease-related Internet use. Methods: Twelve hospitals were randomized to either SCP care or usual care in the pragmatic cluster randomized Registrationsystem Oncological GYnecology (ROGY) Care trial. Newly diagnosed endometrial cancer patients completed questionnaires after diagnosis (N=221; response: 74.7\%, 221/296), 6 months (n=158), and 12 months (n=147), including patients' satisfaction with information provision and care, illness perceptions, health care utilization (how many times patients visited a medical specialist or primary care physician about their cancer in the past 6 months), and disease-related Internet use (whether patients used the Internet to look for information about cancer). Results: In total, 80 of 221 (36.2\%) patients used the Internet to obtain disease-related information. Disease-related Internet use moderated the SCP care effect on the amount of information received about the disease (P=.03) and medical tests (P=.01), helpfulness of the information (P=.01), and how well patients understood their illness (P=.04). All stratified analyses were not statistically significant. However, it appeared that patients who did not seek disease-related information on the Internet in the SCP care arm reported receiving more information about their disease (mean 63.9, SD 20.1 vs mean 58.3, SD 23.7) and medical tests (mean 70.6, SD 23.5 vs mean 64.7, SD 24.9), finding the information more helpful (76.7, SD 22.9 vs mean 67.8, SD 27.2; scale 0-100), and understanding their illness better (mean 6.6, SD 3.0 vs mean 6.1, SD 3.2; scale 1-10) than patients in the usual care arm did. In addition, although all stratified analyses were not significant, patients who did seek disease-related information on the Internet in the SCP care arm appeared to receive less information about their disease (mean 65.7, SD 23.4 vs mean 67.1, SD 20.7) and medical tests (mean 72.4, SD 23.5 vs mean 75.3, SD 21.6), did not find the information more helpful (mean 78.6, SD 21.2 vs mean 76.0, SD 22.0), and reported less understanding of their illness (mean 6.3, SD 2.8 vs mean 7.1, SD 2.7) than patients in the usual care arm did. Conclusions: Paper SCPs appear to improve the amount of information received about the disease and medical tests, the helpfulness of the information, and understanding of the illness for patients who do not search for disease-related information on the Internet. In contrast, paper SCPs do not seem beneficial for patients who do seek disease-related information on the Internet. Trial Registration: ClinicalTrials.gov NCT01185626; https://clinicaltrials.gov/ct2/show/NCT01185626 (Archived by WebCite at http://www.webcitation.org/6fpaMXsDn) ",
doi="10.2196/jmir.4914",
url="http://www.jmir.org/2016/7/e162/",
url="http://www.ncbi.nlm.nih.gov/pubmed/27392550"
}


@Article{info:doi/10.2196/mhealth.5715,
author="Arvidsson, Susann
and Gilljam, Britt-Mari
and Nygren, Jens
and Ruland, Maria Cornelia
and Nordby-B{\o}e, Trude
and Svedberg, Petra",
title="Redesign and Validation of Sisom, an Interactive Assessment and Communication Tool for Children With Cancer",
journal="JMIR Mhealth Uhealth",
year="2016",
month="Jun",
day="24",
volume="4",
number="2",
pages="e76",
keywords="cancer",
keywords="children",
keywords="communication",
keywords="mobile app",
keywords="participation",
keywords="validation",
abstract="Background: Children with cancer undergo intensive and long treatment periods that expose them and their families to a number of difficult physical, mental, and social challenges. Empowering children by actively involving them in their care can help them to cope with these challenges. It can, however, be difficult for children to be involved and talk about their illness experiences in a ``traditional'' conversation with health care professionals, especially for younger children. Sisom (Norwegian acronym ``Si det som det er'' or ``Tell it how it is'') is an interactive computer-based assessment and communication tool to give children (aged 6-12 years) with cancer a ``voice'' in their care. Because of technological advances and widespread use of mobile devices Sisom had to be redesigned to better meet the needs of children of today. Objective: To redesign Sisom for use on mobile devices and to validate and adapt it for use in a Swedish population of children with cancer. Methods: A user-experience design was used. Content adaptation included forward-backward translation by Swedish and Norwegian translators. Healthy children (n=5), children with experiences of cancer treatment (n=5) and their parents (n=5), and pediatric nurses (n=2) were then involved in culturally adapting Sisom to the Swedish context. The iterative low- and high-fidelity evaluation was supported by a think aloud method, semistructured interviews, and drawings to capture children's views of Sisom. The redesign and evaluation continued until no further changes or improvements were identified by the participants or the researchers. Results: Children, parents, and pediatric nurses offered many suggestions for improvements to the original version in terms of content, aesthetics, and usability of Sisom. The most significant change that emerged through user input was a modification that entailed not using problem-focused statements in the assessment items. The parents and pediatric nurses considered the revised assessment items to be general and less diagnosis specific. The evaluation of aesthetics resulted in brighter colors and more positive and exciting details in the animations. The evaluation of usability included improvements of the verbal instructions on how to navigate in Sisom 2, and also that the answers to assessment items in Sisom 2 should be saved to provide the children with the option to pause and to continue answering the remaining assessment items at a later stage. Conclusions: Overall, this paper describes the process of using user-experience design with children in order to redesign and validate an interactive assessment and communication tool and how the outcomes of this process resulted in a new version, Sisom 2. All participants confirmed the usability and qualities of using the final version. Future research should be directed toward the implementation of Sisom 2 in clinical practice and to evaluate outcomes from individual and organizational levels. ",
doi="10.2196/mhealth.5715",
url="http://mhealth.jmir.org/2016/2/e76/",
url="http://www.ncbi.nlm.nih.gov/pubmed/27343004"
}


@Article{info:doi/10.2196/jmir.5521,
author="Mazzocut, Mauro
and Truccolo, Ivana
and Antonini, Marialuisa
and Rinaldi, Fabio
and Omero, Paolo
and Ferrarin, Emanuela
and De Paoli, Paolo
and Tasso, Carlo",
title="Web Conversations About Complementary and Alternative Medicines and Cancer: Content and Sentiment Analysis",
journal="J Med Internet Res",
year="2016",
month="Jun",
day="16",
volume="18",
number="6",
pages="e120",
keywords="complementary and alternative medicine",
keywords="Internet",
keywords="neoplasms",
keywords="health information online",
keywords="website content analysis",
keywords="barriers to patient-doctor communication",
keywords="misinformation",
keywords="sentiment analysis",
keywords="data mining",
abstract="Background: The use of complementary and alternative medicine (CAM) among cancer patients is widespread and mostly self-administrated. Today, one of the most relevant topics is the nondisclosure of CAM use to doctors. This general lack of communication exposes patients to dangerous behaviors and to less reliable information channels, such as the Web. The Italian context scarcely differs from this trend. Today, we are able to mine and analyze systematically the unstructured information available in the Web, to get an insight of people's opinions, beliefs, and rumors concerning health topics. Objective: Our aim was to analyze Italian Web conversations about CAM, identifying the most relevant Web sources, therapies, and diseases and measure the related sentiment. Methods: Data have been collected using the Web Intelligence tool ifMONITOR. The workflow consisted of 6 phases: (1) eligibility criteria definition for the ifMONITOR search profile; (2) creation of a CAM terminology database; (3) generic Web search and automatic filtering, the results have been manually revised to refine the search profile, and stored in the ifMONITOR database; (4) automatic classification using the CAM database terms; (5) selection of the final sample and manual sentiment analysis using a 1-5 score range; (6) manual indexing of the Web sources and CAM therapies type retrieved. Descriptive univariate statistics were computed for each item: absolute frequency, percentage, central tendency (mean sentiment score [MSS]), and variability (standard variation $\sigma$). Results: Overall, 212 Web sources, 423 Web documents, and 868 opinions have been retrieved. The overall sentiment measured tends to a good score (3.6 of 5). Quite a high polarization in the opinions of the conversation partaking emerged from standard variation analysis ($\sigma$?1). In total, 126 of 212 (59.4\%) Web sources retrieved were nonhealth-related. Facebook (89; 21\%) and Yahoo Answers (41; 9.7\%) were the most relevant. In total, 94 CAM therapies have been retrieved. Most belong to the ``biologically based therapies or nutrition'' category: 339 of 868 opinions (39.1\%), showing an MSS of 3.9 ($\sigma$=0.83). Within nutrition, ``diets'' collected 154 opinions (18.4\%) with an MSS of 3.8 ($\sigma$=0.87); ``food as CAM'' overall collected 112 opinions (12.8\%) with a MSS of 4 ($\sigma$=0.68). Excluding diets and food, the most discussed CAM therapy is the controversial Italian ``Di Bella multitherapy'' with 102 opinions (11.8\%) with an MSS of 3.4 ($\sigma$=1.21). Breast cancer was the most mentioned disease: 81 opinions of 868. Conclusions: Conversations about CAM and cancer are ubiquitous. There is a great concern about the biologically based therapies, perceived as harmless and useful, under-rating all risks related to dangerous interactions or malnutrition. Our results can be useful to doctors to be aware of the implications of these beliefs for the clinical practice. Web conversation exploitation could be a strategy to gain insights of people's perspective for other controversial topics. ",
doi="10.2196/jmir.5521",
url="http://www.jmir.org/2016/6/e120/",
url="http://www.ncbi.nlm.nih.gov/pubmed/27311444"
}


@Article{info:doi/10.2196/resprot.5641,
author="Zdenkowski, Nicholas
and Butow, Phyllis
and Hutchings, Elizabeth
and Douglas, Charles
and Coll, R. Joseph
and Boyle, M. Frances",
title="A Decision Aid for Women Considering Neoadjuvant Systemic Therapy for Operable Invasive Breast Cancer: Development and Protocol of a Phase II Evaluation Study (ANZ1301 DOMINO)",
journal="JMIR Res Protoc",
year="2016",
month="May",
day="20",
volume="5",
number="2",
pages="e88",
keywords="breast neoplasm",
keywords="decision aid",
keywords="neoadjuvant",
keywords="chemotherapy",
keywords="protocol",
abstract="Background: Neoadjuvant systemic therapy is offered to selected women with large and/or highly proliferative operable breast cancers. This option adds further complexity to an already complex breast cancer treatment decision tree. Patient decision aids are an established method of increasing patient involvement and knowledge while decreasing decisional conflict. There is currently no decision aid available for women considering neoadjuvant systemic therapy. Objective: We aimed to develop a decision aid for women diagnosed with operable breast cancer and considered suitable for neoadjuvant systemic therapy, and the protocol for a multicenter pre-post study evaluating the acceptability and feasibility of the decision aid. Methods: The decision aid was developed through literature review, expert advisory panel, adherence to the International Patient Decision Aid Standards, and iterative review. The protocol for evaluation of the decision aid consists of the following: eligible women will undertake a series of questionnaires prior to and after using the decision aid. The primary endpoint is decision aid acceptability to patients and investigators and the feasibility of use. Secondary endpoints include change in decisional conflict, participant knowledge, and information involvement preference. Feasibility is defined as the proportion of eligible participants who use the decision aid to help inform their treatment decision. Results: This study has recruited 29 out of a planned 50 participants at four Australian sites. A 12-month recruitment period is expected with a further 12-months follow-up. Conclusions: The decision aid has the potential to allow patients with operable breast cancer, who have been offered neoadjuvant systemic therapy, decreased decisional conflict, and greater involvement in the decision. If this study finds that an online decision aid is feasible and acceptable, it will be made widely available for routine clinical practice. Trial Registration: Australian and New Zealand Clinical Trials Registry ACTRN12614001267640; http://www.anzctr.org.au/TrialSearch.aspx?searchTxt=ACTRN12614001267640\&isBasic=True (Archived by WebCite at http://www.webcitation.org/6gh7BPZdG) ",
doi="10.2196/resprot.5641",
url="http://www.researchprotocols.org/2016/2/e88/",
url="http://www.ncbi.nlm.nih.gov/pubmed/27207563"
}


@Article{info:doi/10.2196/resprot.4757,
author="van Veen, Rebecca Merel
and Beijer, Sandra
and Adriaans, Alberdina Anika Maria
and Vogel-Boezeman, Jeanne
and Kampman, Ellen",
title="Development of a Website Providing Evidence-Based Information About Nutrition and Cancer: Fighting Fiction and Supporting Facts Online",
journal="JMIR Res Protoc",
year="2015",
month="Sep",
day="08",
volume="4",
number="3",
pages="e110",
keywords="cancer",
keywords="information needs",
keywords="Internet",
keywords="nutrition",
keywords="website development",
abstract="Background: Although widely available, the general public, cancer patients, and cancer survivors have difficulties accessing evidence-based information on nutrition and cancer. It is challenging to distinguish myths from facts, and sometimes conflicting information can be found in different places. The public and patients would benefit from evidence-based, correct, and clear information from an easily recognizable source. Objective: The aim of this project is to make scientific information available for the general public, cancer patients, and cancer survivors through a website. The aim of this paper is to describe and evaluate the development of the website as well as related statistics 1st year after its launch. Methods: To develop the initial content for the website, the website was filled with answers to frequently asked questions provided by cancer organizations and the Dutch Dietetic Oncology Group, and by responding to various fiction and facts published in the media. The website was organized into 3 parts, namely, nutrition before (prevention), during, and after cancer therapy; an opportunity for visitors to submit specific questions regarding nutrition and cancer was included. The website was pretested by patients, health care professionals, and communication experts. After launching the website, visitors' questions were answered by nutritional scientists and dieticians with evidence- or eminence-based information on nutrition and cancer. Once the website was live, question categories and website statistics were recorded. Results: Before launch, the key areas for improvement, such as navigation, categorization, and missing information, were identified and adjusted. In the 1st year after the launch, 90,111 individuals visited the website, and 404 questions were submitted on nutrition and cancer. Most of the questions were on cancer prevention and nutrition during the treatment of cancer. Conclusions: The website provides access to evidence- and eminence-based information on nutrition and cancer. As can be concluded from the number of visitors and the number of questions submitted to the website, the website fills a gap. ",
doi="10.2196/resprot.4757",
url="http://www.researchprotocols.org/2015/3/e110/",
url="http://www.ncbi.nlm.nih.gov/pubmed/26350824"
}


@Article{info:doi/10.2196/cancer.4279,
author="Fissler, Tim
and Bientzle, Martina
and Cress, Ulrike
and Kimmerle, Joachim",
title="The Impact of Advice Seekers' Need Salience and Doctors' Communication Style on Attitude and Decision Making: A Web-Based Mammography Consultation Role Play",
journal="JMIR Cancer",
year="2015",
month="Sep",
day="08",
volume="1",
number="2",
pages="e10",
keywords="communication style",
keywords="needs",
keywords="need salience",
keywords="attitude",
keywords="decision-making",
keywords="mammography screening",
keywords="online consultation",
abstract="Background: Patients and advice seekers come to a medical consultation with typical needs, and physicians require adequate communication skills in order to address those needs effectively. It is largely unclear, however, to what extent advice seekers' attitudes toward a medical procedure or their resulting decisions are influenced by a physician's communication that ignores or explicitly takes these needs into account. Objective: This experimental study tested how advice seekers' salient needs and doctor's communication styles influenced advice seekers' attitudes toward mammography screening and their decision whether or not to participate in this procedure. Methods: One hundred women (age range 20-47 years, mean 25.22, SD 4.71) participated in an interactive role play of an online consultation. During the consultation, a fictitious, program-controlled physician provided information about advantages and disadvantages of mammography screening. The physician either merely communicated factual medical information or made additional comments using a communication style oriented toward advice seekers' typical needs for clarity and well-being. Orthogonal to this experimental treatment, participants' personal needs for clarity and for well-being were either made salient before or after the consultation with a needs questionnaire. We also measured all participants' attitudes toward mammography screening and their hypothetical decisions whether or not to participate before and after the experiment. Results: As assumed, the participants expressed strong needs for clarity (mean 4.57, SD 0.42) and for well-being (mean 4.21, SD 0.54) on 5-point Likert scales. Making these needs salient or not revealed significant interaction effects with the physician's communication style regarding participants' attitude change (F1,92=7.23, P=.009, $\eta$2=.073) and decision making (F1,92=4.43, P=.038, $\eta$2=.046). Those participants whose needs were made salient before the consultation responded to the physician's communication style, while participants without salient needs did not. When the physician used a need-oriented communication style, those participants with salient needs had a more positive attitude toward mammography after the consultation than before (mean 0.13, SD 0.54), while they changed their attitude in a negative direction when confronted with a purely fact-oriented communication style (mean ?0.35, SD 0.80). The same applied to decision modification (need-oriented: mean 0.10, SD 0.99; fact-oriented: mean ?0.30, SD 0.88). Conclusions: The findings underline the importance of communicating in a need-oriented style with patients and advice seekers who are aware of their personal needs. Ignoring the needs of those people appears to be particularly problematic. So physicians' sensitivity for advice seekers' currently relevant needs is essential. ",
doi="10.2196/cancer.4279",
url="http://cancer.jmir.org/2015/2/e10/",
url="http://www.ncbi.nlm.nih.gov/pubmed/28410160"
}


@Article{info:doi/10.2196/cancer.4892,
author="Smith, A. Selina
and Claridy, D. Mechelle
and Smith Whitehead, Mary
and Sheats, Q. Joyce
and Yoo, Wonsuk
and Alema-Mensah, A. Ernest
and Ansa, E-O Benjamin
and Coughlin, S. Steven",
title="Lifestyle Modification Experiences of African American Breast Cancer Survivors: A Needs Assessment",
journal="JMIR Cancer",
year="2015",
month="Aug",
day="17",
volume="1",
number="2",
pages="e9",
keywords="African Americans",
keywords="breast cancer",
keywords="cancer survivors",
keywords="nutrition",
keywords="physical activity",
abstract="Background: Little is known about the rates of obesity among African American (AA) breast cancer survivors (BCSs), the availability and use of lifestyle modification methods suitable for this population, and the impact of changes in dietary intake and physical activity on health-related quality of life (HR-QoL). Objective: The objectives of the study were to describe obesity rates, dietary intake, and physical activity as lifestyle modification strategies; examine predictors of engagement in these strategies post diagnosis; and learn more about salient features of lifestyle interventions from AA BCSs participating in a breast cancer support group. Methods: The needs assessment included four components: (1) a literature review to determine existing lifestyle modification strategies of AA BCSs; (2) secondary data analysis of the 2010 National Health Interview Survey, Cancer Control Supplement to examine HR-QoL; (3) administration, to 200 AA BCSs, of an assessment tool relating to weight and breast cancer history, dietary intake, and physical activity through a variety of approaches (eg, Internet, mail, in-person, and telephone); and (4) focus group discussions to frame lifestyle interventions. Results: Preliminary findings indicate that AA BCSs are underrepresented in lifestyle intervention research, have disparities in HR-QoL outcomes, do not meet current cancer prevention guidelines, and have recommendations for effective strategies for lifestyle modification. Conclusions: As analyses of the needs assessment are completed, the research team is partnering with community coalitions and breast cancer support groups in Miami, Chicago, Houston, Los Angeles, and Philadelphia to develop community-engaged intervention approaches for promoting adherence to cancer prevention guidelines. ",
doi="10.2196/cancer.4892",
url="http://cancer.jmir.org/2015/2/e9/",
url="http://www.ncbi.nlm.nih.gov/pubmed/28410162"
}


@Article{info:doi/10.2196/publichealth.3310,
author="Mahoney, Meghan L.
and Tang, Tang
and Ji, Kai
and Ulrich-Schad, Jessica",
title="The Digital Distribution of Public Health News Surrounding the Human Papillomavirus Vaccination: A Longitudinal Infodemiology Study",
journal="JMIR Public Health Surveill",
year="2015",
month="Mar",
day="18",
volume="1",
number="1",
pages="e2",
keywords="new media",
keywords="public health dissemination",
keywords="health communication",
keywords="social media",
keywords="HPV vaccination",
keywords="infodemiology",
keywords="infoveillance",
abstract="Background: New media changes the dissemination of public health information and misinformation. During a guest appearance on the Today Show, US Representative Michele Bachmann claimed that human papillomavirus (HPV) vaccines could cause ``mental retardation''. Objective: The purpose of this study is to explore how new media influences the type of public health information users access, as well as the impact to these platforms after a major controversy. Specifically, this study aims to examine the similarities and differences in the dissemination of news articles related to the HPV vaccination between Google News and Twitter, as well as how the content of news changed after Michele Bachmann's controversial comment. Methods: This study used a purposive sampling to draw the first 100 news articles that appeared on Google News and the first 100 articles that appeared on Twitter from August 1-October 31, 2011. Article tone, source, topics, concerns, references, publication date, and interactive features were coded. The intercoder reliability had a total agreement of .90. Results: Results indicate that 44.0\% of the articles (88/200) about the HPV vaccination had a positive tone, 32.5\% (65/200) maintained a neutral tone, while 23.5\% (47/200) presented a negative tone. Protection against diseases 82.0\% (164/200), vaccine eligibility for females 75.5\% (151/200), and side effects 59.0\% (118/200) were the top three topics covered by these articles. Google News and Twitter articles significantly differed in article tone, source, topics, concerns covered, types of sources referenced in the article, and uses of interactive features. Most notably, topic focus changed from public health information towards political conversation after Bachmann's comment. Before the comment, the HPV vaccine news talked more often about vaccine dosing (P<.001), duration (P=.005), vaccine eligibility for females (P=.03), and protection against diseases (P=.04) than did the later pieces. After the controversy, the news topic shifted towards politics (P=.01) and talked more about HPV vaccine eligibility for males (P=.01). Conclusions: This longitudinal infodemiology study suggests that new media influences public health communication, knowledge transaction, and poses potential problems in the amount of misinformation disseminated during public health campaigns. In addition, the study calls for more research to adopt an infodemiology approach to explore relationships between online information supply and public health decisions. ",
doi="10.2196/publichealth.3310",
url="http://publichealth.jmir.org/2015/1/e2/",
url="http://www.ncbi.nlm.nih.gov/pubmed/27227125"
}


@Article{info:doi/10.2196/cancer.4204,
author="Basch, H. Corey
and Basch, E. Charles
and Hillyer, Clarke Grace
and Reeves, Rachel",
title="YouTube Videos Related to Skin Cancer: A Missed Opportunity for Cancer Prevention and Control",
journal="JMIR Cancer",
year="2015",
month="Mar",
day="02",
volume="1",
number="1",
pages="e1",
keywords="skin cancer",
keywords="social media",
keywords="YouTube",
abstract="Background: Early detection and treatment influence the mortality risk of skin cancer. Objective: The objective of this study was to analyze the content of the most viewed professional and consumer videos uploaded to YouTube related to skin cancer. Methods: A total of 140 professional and consumer videos uploaded between 2007 and 2014 were identified and coded. Coding involved identifying and sorting followed by gathering descriptive information, including length of the video, number of views, and year uploaded. A dichotomous coding scheme (ie, yes or no) was used in coding specific aspects of video content, including provision of information, type of skin cancer, age group, family history, risk reduction, risk factors, fear, and home remedies for skin cancer treatment. Results: The majority of videos provided information related to screening. Many consumer videos conveyed information related to the use of a black salve as a home remedy for skin cancer, despite the fact that there is no evidence that it is an effective treatment. Conclusions: Research is needed to identify characteristics of videos that are most likely to be viewed to inform the development of credible communications. ",
doi="10.2196/cancer.4204",
url="http://cancer.jmir.org/2015/1/e1/",
url="http://www.ncbi.nlm.nih.gov/pubmed/28410167"
}


@Article{info:doi/10.2196/resprot.3407,
author="Stienen, JC Jozette
and Ottevanger, B. Petronella
and Wennekes, Lianne
and Dekker, M. Helena
and van der Maazen, WM Richard
and Mandigers, MPW Caroline
and van Krieken, HJM Johan
and Blijlevens, MA Nicole
and Hermens, PMG Rosella",
title="Development and Evaluation of an Educational E-Tool to Help Patients With Non-Hodgkin's Lymphoma Manage Their Personal Care Pathway",
journal="JMIR Res Protoc",
year="2015",
month="Jan",
day="09",
volume="4",
number="1",
pages="e6",
keywords="eHealth",
keywords="personalized care",
keywords="non-Hodgkin's lymphoma",
keywords="patient education",
keywords="care pathway",
keywords="consumer health information",
keywords="empowerment",
keywords="personal care management",
abstract="Background: An overload of health-related information is available for patients on numerous websites, guidelines, and information leaflets. However, the increasing need for personalized health-related information is currently unmet. Objective: This study evaluates an educational e-tool for patients with non-Hodgkin's lymphoma (NHL) designed to meet patient needs with respect to personalized and complete health-related information provision. The e-tool aims to help NHL patients manage and understand their personal care pathway, by providing them with insight into their own care pathway, the possibility to keep a diary, and structured health-related information. Methods: Together with a multidisciplinary NHL expert panel, we developed an e-tool consisting of two sections: (1) a personal section for patients' own care pathway and their experiences, and (2) an informative section including information on NHL. We developed an ideal NHL care pathway based on the available (inter)national guidelines. The ideal care pathway, including date of first consultation, diagnosis, and therapy start, was used to set up the personal care pathway. The informative section was developed in collaboration with the patient association, Hematon. Regarding participants, 14 patients and 6 laymen were asked to evaluate the e-tool. The 24-item questionnaire used discussed issues concerning layout (6 questions), user convenience (3 questions), menu clarity (3 questions), information clarity (5 questions), and general impression (7 questions). In addition, the panel members were asked to give their feedback by email. Results: A comprehensive overview of diagnostics, treatments, and aftercare can be established by patients completing the questions from the personal section. The informative section consisted of NHL information regarding NHL in general, diagnostics, therapy, aftercare, and waiting times. Regarding participants, 6 patients and 6 laymen completed the questionnaire. Overall, the feedback was positive, with at least 75\% satisfaction on each feedback item. Important strengths mentioned were the use of a low health-literacy level, the opportunity to document the personal care pathway and experiences, and the clear overview of the information provided. The added value of the e-tool in general was pointed out as very useful for preparing the consultation with one's doctor and for providing all information on one website, including the opportunity for a personalized care pathway and diary. The majority of the revisions concerned wording and clarity. In addition, more explicit information on immunotherapy, experimental therapy, and psychosocial support was added. Conclusions: We have developed a personal care management e-tool for NHL patients. This tool contains a unique way to help patients manage their personal care pathway and give them insight into their NHL by providing health-related information and a personal diary. This evaluation showed that our e-tool meets patients' needs concerning personalized health-related information, which might serve as a good example for other oncologic diseases. Future research should focus on the possible impact of the e-tool on doctor-patient communication during consultations. ",
doi="10.2196/resprot.3407",
url="http://www.researchprotocols.org/2015/1/e6/",
url="http://www.ncbi.nlm.nih.gov/pubmed/25575019"
}