TY - JOUR AU - Terra, Lara AU - Hooning, J. Maartje AU - Heemskerk-Gerritsen, M. Bernadette A. AU - van Beurden, Marc AU - Roeters van Lennep, E. Jeanine AU - van Doorn, C. Helena AU - de Hullu, A. Joanne AU - Mom, Constantijne AU - van Dorst, L. Eleonora B. AU - Mourits, E. Marian J. AU - Slangen, M. Brigitte F. AU - Gaarenstroom, N. Katja AU - Zillikens, Carola M. AU - Leiner, Tim AU - van der Kolk, Lizet AU - Collee, Margriet AU - Wevers, Marijke AU - Ausems, M. Margreet G. E. AU - van Engelen, Klaartje AU - Berger, PV Lieke AU - van Asperen, J. Christi AU - Gomez-Garcia, B. Encarna AU - van de Beek, Irma AU - Rookus, A. Matti AU - Hauptmann, Michael AU - Bleiker, M. Eveline AU - Schagen, B. Sanne AU - Aaronson, K. Neil AU - Maas, M. Angela H. E. AU - van Leeuwen, E. Flora PY - 2021/1/22 TI - 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) JO - JMIR Res Protoc SP - e24414 VL - 10 IS - 1 KW - risk-reducing salpingo-oophorectomy KW - BRCA1/2 KW - cardiovascular disease KW - osteoporosis KW - cognition KW - health-related quality of life N2 - 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 UR - http://www.researchprotocols.org/2021/1/e24414/ UR - http://dx.doi.org/10.2196/24414 UR - http://www.ncbi.nlm.nih.gov/pubmed/33480862 ID - info:doi/10.2196/24414 ER - TY - JOUR AU - Sandell, Tiffany AU - Schütze, Heike AU - Miller, Andrew PY - 2021/1/19 TI - A Shared Cancer Follow-Up Model of Care Between General Practitioners and Radiation Oncologists for Patients With Breast, Prostate, and Colorectal Cancer: Protocol for a Mixed Methods Implementation Study JO - JMIR Res Protoc SP - e21752 VL - 10 IS - 1 KW - radiation oncology KW - general practice KW - health technology KW - communication KW - cancer KW - shared care KW - follow-up N2 - Background: The rising incidence of cancer and increasing numbers of cancer survivors have resulted in the need to find alternative models of care for cancer follow-up care. The acceptability for follow-up care in general practice is growing, and acceptance increases with shared-care models where oncologists continue to oversee the care. However, a major barrier to this model is the effective exchange of information in real time between oncologists and general practitioners. Improved communication technology plays an important role in the acceptability and feasibility of shared cancer follow-up care. Objective: The aim of this study is to evaluate the feasibility and acceptability of a shared cancer follow-up model of care between patients, general practitioners and radiation oncologists. Methods: This is a mixed methods, multisite implementation study exploring shared follow-up care for breast, colorectal, and prostate cancer patients treated with curative radiotherapy in New South Wales, Australia. This study uses web-based technology to support general practitioners in performing some aspects of routine radiotherapy follow-up care, while being overseen by a radiation oncologist in real time. The study has two phases: Phase 1 is designed to establish the level of agreement between general practitioners and radiation oncologists and Phase 2 is designed to implement shared follow-up care into practice and to evaluate this implementation. Results: Recruitment of radiation oncologists, patients, and general practitioners commenced in December 2020 and will continue until February 2021. Data collection will occur during 2021, and data will be ready for analysis by the end of 2021. Conclusions: Few studies have investigated the role of health technologies in supporting communication deficiencies for shared cancer follow-up care. The implementation and evaluation of models of care need to be conducted using a person-centered approach that is responsive to patients? preferences and needs. Should the findings of the study be acceptable and feasible to radiation oncologists, general practitioners, and patients, it can be quickly implemented and expanded to other tumor groups or to medical oncology and hematology. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12620001083987; http://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=380057 International Registered Report Identifier (IRRID): PRR1-10.2196/21752 UR - http://www.researchprotocols.org/2021/1/e21752/ UR - http://dx.doi.org/10.2196/21752 UR - http://www.ncbi.nlm.nih.gov/pubmed/33464209 ID - info:doi/10.2196/21752 ER - TY - JOUR AU - Greenberg-Worisek, Alexandra AU - Ferede, Liaa AU - Balls-Berry, Joyce AU - Marigi, Ian AU - Valentin Mendez, Emily AU - Bajwa, Numra AU - Ouk, Melody AU - Orellana, Minerva AU - Enders, Felicity PY - 2020/8/10 TI - Differences in Electronic Personal Health Information Tool Use Between Rural and Urban Cancer Patients in the United States: Secondary Data Analysis JO - JMIR Cancer SP - e17352 VL - 6 IS - 2 KW - cancer KW - patient engagement KW - health research KW - digital divide KW - disparities N2 - Background: Studies have previously shown that rural cancer patients are diagnosed at later stages of disease. This delay is felt throughout treatment and follow-up, reflected in the fact that rural patients often have poorer clinical outcomes compared with their urban counterparts. Objective: Few studies have explored whether there is a difference in cancer patients? current use of health information technology tools by residential location. Methods: Data from 7 cycles of the Health Information National Trends Survey (HINTS, 2003-2017) were merged and analyzed to examine whether differences exist in managing electronic personal health information (ePHI) and emailing health care providers among rural and urban cancer patients. Geographic location was categorized using Rural-Urban Continuum Codes (RUCCs). Bivariate analyses and multivariable logistic regression were used to determine whether associations existed between rural/urban residency and use of health information technology among cancer patients. Results: Of the 3031 cancer patients/survivors who responded across the 7 cycles of HINTS, 797 (26.9%) resided in rural areas. No difference was found between rural and urban cancer patients in having managed ePHI in the past 12 months (OR 0.78, 95% CI 0.43-1.40). Rural cancer patients were significantly less likely to email health care providers than their urban counterparts (OR 0.52, 95% CI 0.32-0.84). Conclusions: The digital divide between rural and urban cancer residents does not extend to general ePHI management; however, electronic communication with providers is significantly lower among rural cancer patients than urban cancer patients. Further research is needed to determine whether such disparities extend to other health information technology tools that might benefit rural cancer patients as well as other chronic conditions. UR - http://cancer.jmir.org/2020/2/e17352/ UR - http://dx.doi.org/10.2196/17352 UR - http://www.ncbi.nlm.nih.gov/pubmed/32773369 ID - info:doi/10.2196/17352 ER - TY - JOUR AU - Gilljam, Britt-Mari AU - Nygren, M. Jens AU - Svedberg, Petra AU - Arvidsson, Susann PY - 2020/7/28 TI - Impact of an Electronic Health Service on Child Participation in Pediatric Oncology Care: Quasiexperimental Study JO - J Med Internet Res SP - e17673 VL - 22 IS - 7 KW - cancer KW - child care KW - communication KW - eHealth KW - patient participation N2 - Background: For children 6-12 years old, there is a shortage of electronic Health (eHealth) services that promote their participation in health care. Therefore, a digital communication tool, called Sisom, was developed to give children a voice in their health care. Children with long-term diseases want to be more involved in their health care and have the right to receive information, be listened to, express their opinions, and participate in decision making in health care. However, the outcomes of using Sisom in practice at pediatric oncology clinics have not been investigated. Objective: The aim of this study was to investigate children?s participation during appointments with pediatricians at pediatric oncology clinics, with or without the use of the eHealth service Sisom. Methods: A quasiexperimental design with mixed methods was used. We analyzed 27 filmed appointments with pediatricians for 14 children (8 girls and 6 boys) aged 6-12 years (mean 8.3 years) with a cancer diagnosis. The intervention group consisted of children who used Sisom prior to their appointments with pediatricians at a pediatric oncology clinic, and the control group consisted of children who had appointments with pediatricians at 4 pediatric oncology clinics. Data from observations from the videos were quantitatively and qualitatively analyzed. The quantitative analysis included manual calculations of how many times the pediatricians spoke directly to the children, the proportion of the appointment time that the children were talking, and levels of participation by the children. For the qualitative analysis, we used directed content analysis to analyze the children?s levels of participation guided by a framework based on Shier?s model of participation. Results: Pediatricians directed a greater proportion of their discussion toward the child in the intervention group (731 occasions) than in the control group (624 occasions), but the proportion of the appointment time the children talked was almost the same for both the intervention and control groups (mean 17.0 minutes vs 17.6 minutes). The levels of participation corresponded to the first three levels of Shier?s participation model: children were listened to, children were supported to express their views, and children?s views were taken into account. The results showed an increased level of participation by the children in the intervention group. Several codes that were found did not fit into any of the existing categories, and a new category was thus formed: children received information. Conclusions: This study shows that the eHealth service Sisom can increase children?s participation during appointments with health care professionals. Further studies employing a randomized control design focusing on the effects of eHealth services on children?s health outcomes, perceived participation, and cost-effectiveness could make a significant contribution to guiding the implementation of eHealth services in pediatric care. UR - http://www.jmir.org/2020/7/e17673/ UR - http://dx.doi.org/10.2196/17673 UR - http://www.ncbi.nlm.nih.gov/pubmed/32720907 ID - info:doi/10.2196/17673 ER - TY - JOUR AU - Cunningham-Erves, Jennifer AU - Koyama, Tatsuki AU - Huang, Yi AU - Jones, Jessica AU - Wilkins, H. Consuelo AU - Harnack, Lora AU - McAfee, Caree AU - Hull, C. Pamela PY - 2019/07/02 TI - Providers? Perceptions of Parental Human Papillomavirus Vaccine Hesitancy: Cross-Sectional Study JO - JMIR Cancer SP - e13832 VL - 5 IS - 2 KW - neoplasms KW - papillomavirus infections KW - papillomavirus vaccines KW - primary prevention KW - health care provider KW - vaccine hesitancy KW - provider barriers to HPV vaccination N2 - Background: Human papillomavirus (HPV) vaccine hesitancy among parents contributes to low vaccination coverage in adolescents. To improve health care provider communication and vaccine recommendation practices with hesitant parents, it is important to understand how providers perceive parental HPV vaccine hesitancy. Objective: This study aimed to characterize perceived reasons for parental HPV vaccine hesitancy and identify factors associated with perceived parental hesitancy among providers at community-based pediatric clinics. Methods: In 2018, providers in 23 community-based pediatric clinics in Tennessee were invited to complete a Web-based baseline survey as part of a larger quality improvement study focused on HPV vaccine uptake. These survey data were used for a cross-sectional, secondary data analysis. Scale scores ranging from 0 to 100 were calculated for provider self-efficacy (confidence in ability to recommend HPV vaccine), provider outcome expectations (expectations that recommendation will influence parents? decisions), and perceived parental HPV vaccine hesitancy. Provider confidence in HPV vaccine safety and effectiveness were categorized as high versus low. Clinic-level exposures examined were clinic size and rural-urban location. Descriptive analyses were used to characterize perceived parental barriers by provider type. Mixed-effects linear regression models were fit taking one exposure variable at a time, whereas controlling for provider type, age, gender, and race to identify provider- and clinic-level factors associated with perceived parental barriers to HPV vaccination. Results: Of the 187 providers located in the 23 clinics, 137 completed the survey. The majority of physician providers were white and female, with a higher percentage of females among nurse practitioners (NPs) and physician assistants (PAs). The most common parental barriers to HPV vaccination perceived by providers were concerns about HPV vaccine safety (88%), child being too young (78%), low risk of HPV infection for child through sexual activity (70%), and mistrust in vaccines (59%). In adjusted mixed models, perceived parental HPV vaccine hesitancy was significantly associated with several provider-level factors: self-efficacy (P=.001), outcome expectations (P<.001), and confidence in HPV vaccine safety (P=.009). No significant associations were observed between perceived parental HPV vaccine hesitancy and clinic-level factors clinic size nor location. Conclusions: Researchers developing provider-focused interventions to reduce parental HPV vaccine hesitancy should consider addressing providers? self-efficacy, outcome expectations, and confidence in HPV vaccine safety to help providers communicate more effectively with HPV vaccine hesitant parents. UR - https://cancer.jmir.org/2019/2/e13832/ UR - http://dx.doi.org/10.2196/13832 UR - http://www.ncbi.nlm.nih.gov/pubmed/31267976 ID - info:doi/10.2196/13832 ER - TY - JOUR AU - Dodd, H. Rachael AU - Obermair, M. Helena AU - McCaffery, J. Kirsten PY - 2019/04/11 TI - A Thematic Analysis of Attitudes Toward Changes to Cervical Screening in Australia JO - JMIR Cancer SP - e12307 VL - 5 IS - 1 KW - screening KW - attitudes KW - cervical cancer KW - knowledge N2 - Background: In December 2017, the Australian National Cervical Screening Program (NCSP) was changed to encompass a 5-yearly human papillomavirus (HPV) primary test for women aged 25 to 74 years. Public concerns about changes to screening programs has been demonstrated in other countries previously. Objective: The aim of the study was to explore in depth women?s understanding of and concerns about the specific changes to the Australian NCSP implemented in December 2017. Methods: A Web-based petition (Change.org) opposing the changes received over 70,000 signatures and nearly 20,000 comments from February to March 2017. Of 19,633 comments, a random sample of 10% (2000/19,633) were analyzed using content analysis (reported elsewhere). Comments relating directly to the specific changes to the program were further analyzed using qualitative thematic analysis. Results: Around one-third (34.55%; 691/2000) of the total comments were related to concerns about specific changes to the program. The greatest concern was that screening intervals would be too long and that cancer may not be detected in time for successful treatment. Missing cancer in younger women (aged <25 years) was also an important concern, perceiving younger women to remain at significant risk. Notably, concern was rarely expressed about the new test (the HPV test). Conclusions: Gaps in knowledge and understanding about changes to the program and the rationale behind these have caused health concerns among women. Worry about the extended screening interval indicates little understanding of the slow progression of the HPV infection to cervical cancer or the high rates of regression. Identification of these knowledge gaps can inform both deintensification of other cancer screening programs and practitioners, so that they are able to address these concerns with their patients. UR - http://cancer.jmir.org/2019/1/e12307/ UR - http://dx.doi.org/10.2196/12307 UR - http://www.ncbi.nlm.nih.gov/pubmed/30973340 ID - info:doi/10.2196/12307 ER - TY - JOUR AU - Lipson-Smith, Ruby AU - White, Fiona AU - White, Alan AU - Serong, Lesley AU - Cooper, Guy AU - Price-Bell, Georgia AU - Hyatt, Amelia PY - 2019/03/12 TI - Co-Design of a Consultation Audio-Recording Mobile App for People With Cancer: The SecondEars App JO - JMIR Form Res SP - e11111 VL - 3 IS - 1 KW - referral and consultation KW - adult KW - humans KW - cancer KW - audiovisual aids KW - mobile apps KW - community-based participatory research KW - health behavior KW - psychological theory N2 - Background: Many patients choose to audio-record their medical consultations so that they can relisten to them at home and share them with family. Consultation audio-recordings can improve patients? recall and understanding of medical information and increase their involvement in decision making. A hospital-endorsed consultation audio-recording mobile app would provide patients with the permission and means to audio-record their consultations. The Theory of Planned Behavior provides a framework for understanding how patients can be encouraged to appropriately audio-record consultations. Objective: The aim of this study was to use a co-design process to develop a consultation audio-recording mobile app called SecondEars. Methods: App development began with stakeholder engagement, followed by a series of 6 co-design workshops and then user acceptance testing. Stakeholder engagement included advice from legal, information technology (IT), clinical and allied health leads; digital strategy; and medical records. he co-design workshops were attended by: patient consumers, members of the research team, IT staff, the app designers, clinicians, and staff from medical records. During workshops 1 to 4, the purpose and scope of the app were refined, possible pitfalls were addressed, and design features were discussed. The app designers then incorporated the results from these workshops to produce a wireframe mock-up of the proposed SecondEars app, which was presented for feedback at workshops 5 and 6. Results: The stakeholders identified 6 requirements for the app, including that it be patient driven, secure, clear in terms of legal responsibilities, linked to the patient?s medical record, and that it should require minimal upfront and ongoing resources. These requirements informed the scope of the co-design workshops. The workshops were attended by between 4 and 13 people. The workshop attendees developed a list of required features and suggestions for user interface design. The app developers used these requirements and recommendations to develop a prototype of the SecondEars app in iOS, which was then refined through user acceptance testing. Conclusions: The SecondEars app allows patients to have control and autonomy over audio-recording and sharing their consultations while maintaining privacy and safety for medical information and legal protection for clinicians. The app has been designed to have low upkeep and minimal impact on clinical processes. The SecondEars prototype is currently being tested with patients in a clinical setting. UR - http://formative.jmir.org/2019/1/e11111/ UR - http://dx.doi.org/10.2196/11111 UR - http://www.ncbi.nlm.nih.gov/pubmed/30860487 ID - info:doi/10.2196/11111 ER - TY - JOUR AU - Noordman, Janneke AU - Driesenaar, A. Jeanine AU - van Bruinessen, R. Inge AU - Portielje, EA Johanneke AU - van Dulmen, Sandra PY - 2019/01/30 TI - Evaluation and Implementation of ListeningTime: A Web-Based Preparatory Communication Tool for Elderly Patients With Cancer and Their Health Care Providers JO - JMIR Cancer SP - e11556 VL - 5 IS - 1 KW - audio-facility KW - cancer patients KW - communication KW - internet KW - health care providers KW - videos KW - Web-based tool N2 - Background: Effective patient-provider communication is an important condition to deliver optimal care and it supports patients in coping with their disease. The complex and emotionally loaded setting of oncology care challenges both health care providers (HCPs) and patients in reaching effective communication. ListeningTime is developed for elderly patients with cancer and their oncological HCPs to help them (better) prepare the clinical encounter and overcome communication barriers. ListeningTime is a Web-based preparatory communication tool including modeling videos and has an audio-facility to listen back to recorded encounters. Objective: This study aims to evaluate the usability, perceived usefulness, and actual use of ListeningTime, through the eyes of elderly patients with cancer and their oncological HCPs. If highly rated, the ultimate goal is to make ListeningTime publicly available. Methods: First, members of a panel of elderly cancer survivors and patients (age ?65 years) were approached to evaluate ListeningTime through a Web-based questionnaire. The usability and perceived usefulness were assessed. Second, ListeningTime was evaluated in real-life practice through a pilot study in 3 Dutch hospitals. In these hospitals, elderly patients with cancer and their oncological HCPs were approached to evaluate ListeningTime through a similar Web-based questionnaire, measuring the perceived usefulness. In addition, we examined log files and user statistics to get insight into how the program was used. Results: A total of 30 cancer survivors or patients from the patient panel, and 17 patients and 8 HCPs from the hospitals, evaluated ListeningTime. Overall, both panel members and hospital patients were positive about the ListeningTime website, audio-facility, and video fragments. Some patients suggested improvements with respect to the actors? performances in the video fragments and believed that ListeningTime is mainly suitable for non experienced patients. HCPs were also positive about ListeningTime; they valued the video fragments for patients and the audio-facility for patients and themselves. However, providers did not relisten their own recorded encounters. Patients did use the audio-facility to relisten their encounters. Conclusions: ListeningTime was highly rated, both by patients and their oncological HCPs. As a result, the video fragments of ListeningTime are now made publicly available for elderly patients with cancer through the Dutch website ?kanker.nl.? UR - http://cancer.jmir.org/2019/1/e11556/ UR - http://dx.doi.org/10.2196/11556 UR - http://www.ncbi.nlm.nih.gov/pubmed/30698525 ID - info:doi/10.2196/11556 ER - TY - JOUR AU - Lofters, K. Aisha AU - Telner, Deanna AU - Kalia, Sumeet AU - Slater, Morgan PY - 2018/11/01 TI - Association Between Adherence to Cancer Screening and Knowledge of Screening Guidelines: Feasibility Study Linking Self-Reported Survey Data With Medical Records JO - JMIR Cancer SP - e10529 VL - 4 IS - 2 KW - cancer screening KW - electronic medical records KW - electronic survey KW - health literacy KW - self-reported data N2 - Background: It is possible that patients who are more aware of cancer screening guidelines may be more likely to adhere to them. Objective: The aim of this study was to determine whether screening knowledge was associated with the documented screening participation. We also assessed the feasibility and acceptability of linking electronic survey data with clinical data in the primary care setting. Methods: We conducted an electronic survey at 2 sites in Toronto, Canada. At one site, eligible patients were approached in the waiting room to complete the survey; at the second site, eligible patients were sent an email inviting them to participate. All participants were asked to consent to the linkage of their survey results with their electronic medical record. Results: Overall, 1683 participants responded to the survey?247 responded in the waiting room (response rate, 247/366, 67.5%), whereas 1436 responded through email (response rate, 1436/5779, 24.8%). More than 80% (199/247 and 1245/1436) of participants consented to linking their survey data to their medical record. Knowledge of cancer screening guidelines was generally low. Although the majority of participants were able to identify the recommended tests for breast and cervical screening, very few participants correctly identified the recommended age and frequency of screening, with a maximum of 22% (21/95) of screen-eligible women correctly answering all 3 questions for breast cancer screening. However, this low level of knowledge among patients was not significantly associated with screening uptake, particularly after adjustment for sociodemographic characteristics. Conclusions: Although knowledge of screening guidelines was low among patients in our study, this was not associated with screening participation. Participants were willing to link self-reported data with their medical record data, which has substantial implications for future research. UR - http://cancer.jmir.org/2018/2/e10529/ UR - http://dx.doi.org/10.2196/10529 UR - http://www.ncbi.nlm.nih.gov/pubmed/30389655 ID - info:doi/10.2196/10529 ER - TY - JOUR AU - Subramanian, Sujha AU - Kaganova, Yevgeniya AU - Zhang, Yuying AU - Hoover, Sonja AU - Nyambe, Namakau AU - Pinder, Leeya AU - Chibwesha, Carla AU - Kapambwe, Sharon AU - Parham, Groesbeck PY - 2018/07/25 TI - Patient Preferences and Willingness to Pay for Cervical Cancer Prevention in Zambia: Protocol for a Multi-Cohort Discrete Choice Experiment JO - JMIR Res Protoc SP - e10429 VL - 7 IS - 7 KW - discrete choice experiment KW - cervical cancer prevention KW - economic evaluation N2 - Background: Although most countries in southern Africa have cervical cancer screening programs, these programs generally fail to reach a significant majority of women because they are often implemented as pilot or research projects, and this limits their scope and ability to scale up screening. Some countries have planned larger-scale programs, but these have either never been implemented or have not been successfully scaled up. Most of the global burden of cervical cancer is experienced in countries with limited resources, and mortality from cervical cancer is the most common cause of cancer-related deaths among women in Sub-Saharan Africa. Objective: The purpose of this study is to learn about preferences for cervical cancer screening in Zambia, to identify barriers and facilitators for screening uptake, and to evaluate willingness to pay for screening services to support the scaling up of cervical cancer screening programs. Methods: We will conduct a discrete choice experiment by interviewing women and men and asking them to choose among constructed scenarios with varying combinations of attributes relevant to cervical cancer screening. To inform the discrete choice experiment, we will conduct focus groups and interviews about general knowledge and attitudes about cervical screening, perception about the availability of screening, stigma associated with cancer and HIV, and payment for health care services. For the discrete choice experiment, we will have a maximum design of 120 choice sets divided into 15 sets of 8 tasks each with a sample size of 320-400 respondents. We will use a hierarchical Bayesian estimation procedure to assess attributes at the following two levels: group and individual levels. Results: The model will generate preferences for attributes to assess the most important features and allow for the assessment of differences among cohorts. We will conduct policy simulations reflecting potential changes in the attributes of the screening facilities and calculate the projected changes in preference for choosing to undergo cervical cancer screening. The findings from the discrete choice experiment will be supplemented with interviews, focus groups, and patient surveys to ensure a comprehensive and context-based interpretation of the results. Conclusions: Because willingness to pay for cervical cancer screening has not been previously assessed, this will be a unique and important contribution to the literature. This study will take into account the high HIV prevalence in Sub-Saharan Africa and prevailing gender attitudes to identify an optimal package of interventions to reduce cervical cancer incidence. This simulation of women?s decisions (and men?s support) to undergo screening will lay the foundation for understanding the stated preferences and willingness to pay to help design future screening programs. Registered Report Identifier: RR1-10.2196/10429 UR - http://www.researchprotocols.org/2018/7/e10429/ UR - http://dx.doi.org/10.2196/10429 UR - http://www.ncbi.nlm.nih.gov/pubmed/30045833 ID - info:doi/10.2196/10429 ER - TY - JOUR AU - Rat, Anne-Christine AU - Ricci, Laetitia AU - Guillemin, Francis AU - Ricatte, Camille AU - Pongy, Manon AU - Vieux, Rachel AU - Spitz, Elisabeth AU - Muller, Laurent PY - 2018/07/19 TI - Development of a Web-Based Formative Self-Assessment Tool for Physicians to Practice Breaking Bad News (BRADNET) JO - JMIR Med Educ SP - e17 VL - 4 IS - 2 KW - bad news disclosure KW - health communication KW - physician-patient relationship KW - distance e-learning N2 - Background: Although most physicians in medical settings have to deliver bad news, the skills of delivering bad news to patients have been given insufficient attention. Delivering bad news is a complex communication task that includes verbal and nonverbal skills, the ability to recognize and respond to patients? emotions and the importance of considering the patient?s environment such as culture and social status. How bad news is delivered can have consequences that may affect patients, sometimes over the long term. Objective: This project aimed to develop a Web-based formative self-assessment tool for physicians to practice delivering bad news to minimize the deleterious effects of poor way of breaking bad news about a disease, whatever the disease. Methods: BReaking bAD NEws Tool (BRADNET) items were developed by reviewing existing protocols and recommendations for delivering bad news. We also examined instruments for assessing patient-physician communications and conducted semistructured interviews with patients and physicians. From this step, we selected specific themes and then pooled these themes before consensus was achieved on a good practices communication framework list. Items were then created from this list. To ensure that physicians found BRADNET acceptable, understandable, and relevant to their patients? condition, the tool was refined by a working group of clinicians familiar with delivering bad news. The think-aloud approach was used to explore the impact of the items and messages and why and how these messages could change physicians? relations with patients or how to deliver bad news. Finally, formative self-assessment sessions were constructed according to a double perspective of progression: a chronological progression of the disclosure of the bad news and the growing difficulty of items (difficulty concerning the expected level of self-reflection). Results: The good practices communication framework list comprised 70 specific issues related to breaking bad news pooled into 8 main domains: opening, preparing for the delivery of bad news, communication techniques, consultation content, attention, physician emotional management, shared decision making, and the relationship between the physician and the medical team. After constructing the items from this list, the items were extensively refined to make them more useful to the target audience, and one item was added. BRADNET contains 71 items, each including a question, response options, and a corresponding message, which were divided into 8 domains and assessed with 12 self-assessment sessions. The BRADNET Web-based platform was developed according to the cognitive load theory and the cognitive theory of multimedia learning. Conclusions: The objective of this Web-based assessment tool was to create a ?space? for reflection. It contained items leading to self-reflection and messages that introduced recommended communication behaviors. Our approach was innovative as it provided an inexpensive distance-learning self-assessment tool that was manageable and less time-consuming for physicians with often overwhelming schedules. UR - http://mededu.jmir.org/2018/2/e17/ UR - http://dx.doi.org/10.2196/mededu.9551 UR - http://www.ncbi.nlm.nih.gov/pubmed/30026180 ID - info:doi/10.2196/mededu.9551 ER - TY - JOUR AU - Cherrez Ojeda, Ivan AU - Vanegas, Emanuel AU - Torres, Michell AU - Calderón, Carlos Juan AU - Calero, Erick AU - Cherrez, Annia AU - Felix, Miguel AU - Mata, Valeria AU - Cherrez, Sofia AU - Simancas, Daniel PY - 2018/02/20 TI - Ecuadorian Cancer Patients? Preference for Information and Communication Technologies: Cross-Sectional Study JO - J Med Internet Res SP - e50 VL - 20 IS - 2 KW - social media KW - telemedicine KW - cancer KW - Web 2.0 KW - mHealth N2 - Background: The instantaneous spread of information, low costs, and broad availability of information and communication technologies (ICTs) make them an attractive platform for managing care, patient communication, and medical interventions in cancer treatment. There is little information available in Latin America about the level of usage of ICTs for and by cancer patients. Our study attempts to fill this gap. Objective: The aim of this study was to assess the level of ICT use and patterns of preferences among cancer patients. Methods: We conducted an anonymous cross-sectional survey study in 500 Ecuadorian cancer patients. This questionnaire consisted of 22 items about demographic and clinical data, together with the preferences of people who use ICTs. Chi-square, crude, and adjusted logistic regressions were performed. Results: Of the total, 43.2% (216/500) of participants reported that they had access to the Internet, and 25.4% (127/500) reported that they neither owned a cell phone nor did they have access to the Internet. The Internet constituted the highest usage rate as a source of information about malignant diseases (74.3%, 162/218) regardless of age (P<.001). With regard to the preferences on how patients would like to use ICTs to receive information about diseases, WhatsApp (66.5%, 145/218) and short message service (SMS) text messaging (61.0%, 133/218) were widely reported as interesting communication channels. Similarly, WhatsApp (72.0%, 157/218) followed by SMS (63.8%, 139/218) were reported as the preferred ICTs through which patients would like to ask physicians about diseases. Adjusted regression analysis showed that patients aged between 40 and 64 years were more likely to be interested in receiving information through SMS (odds ratio, OR 5.09, 95% CI 1.92-13.32), as well as for asking questions to physicians through this same media (OR 9.78, CI 3.45-27.67) than the oldest group. Conclusions: WhatsApp, SMS, and email are effective and widely used ICTs that can promote communication between cancer patients and physicians. According to age range, new ICTs such as Facebook are still emerging. Future studies should investigate how to develop and promote ICT-based resources more effectively to engage the outcomes of cancer patients. The widespread use of ICTs narrows the gap between cancer patients with restricted socioeconomic conditions and those with wealth and easily available technological means, thereby opening up new possibilities in low-income countries. UR - http://www.jmir.org/2018/2/e50/ UR - http://dx.doi.org/10.2196/jmir.8485 UR - http://www.ncbi.nlm.nih.gov/pubmed/29463492 ID - info:doi/10.2196/jmir.8485 ER - TY - JOUR AU - Rosen, L. Brittany AU - Bishop, M. James AU - McDonald, L. Skye AU - Kahn, A. Jessica AU - Kreps, L. Gary PY - 2018/02/16 TI - Quality of Web-Based Educational Interventions for Clinicians on Human Papillomavirus Vaccine: Content and Usability Assessment JO - JMIR Cancer SP - e3 VL - 4 IS - 1 KW - papillomavirus vaccines KW - internet KW - program evaluation KW - health personnel N2 - Background: Human papillomavirus (HPV) vaccination rates fall far short of Healthy People 2020 objectives. A leading reason is that clinicians do not recommend the vaccine consistently and strongly to girls and boys in the age group recommended for vaccination. Although Web-based HPV vaccine educational interventions for clinicians have been created to promote vaccination recommendations, rigorous evaluations of these interventions have not been conducted. Such evaluations are important to maximize the efficacy of educational interventions in promoting clinician recommendations for HPV vaccination. Objective: The objectives of our study were (1) to expand previous research by systematically identifying HPV vaccine Web-based educational interventions developed for clinicians and (2) to evaluate the quality of these Web-based educational interventions as defined by access, content, design, user evaluation, interactivity, and use of theory or models to create the interventions. Methods: Current HPV vaccine Web-based educational interventions were identified from general search engines (ie, Google), continuing medical education search engines, health department websites, and professional organization websites. Web-based educational interventions were included if they were created for clinicians (defined as individuals qualified to deliver health care services, such as physicians, clinical nurses, and school nurses, to patients aged 9 to 26 years), delivered information about the HPV vaccine and how to increase vaccination rates, and provided continuing education credits. The interventions? content and usability were analyzed using 6 key indicators: access, content, design, evaluation, interactivity, and use of theory or models. Results: A total of 21 interventions were identified, out of which 7 (33%) were webinars, 7 (33%) were videos or lectures, and 7 (33%) were other (eg, text articles, website modules). Of the 21 interventions, 17 (81%) identified the purpose of the intervention, 12 (57%) provided the date that the information had been updated (7 of these were updated within the last 6 months), 14 (67%) provided the participants with the opportunity to provide feedback on the intervention, and 5 (24%) provided an interactive component. None of the educational interventions explicitly stated that a theory or model was used to develop the intervention. Conclusions: This analysis demonstrates that a substantial proportion of Web-based HPV vaccine educational interventions has not been developed using established health education and design principles. Interventions designed using these principles may increase strong and consistent HPV vaccination recommendations by clinicians. UR - http://cancer.jmir.org/2018/1/e3/ UR - http://dx.doi.org/10.2196/cancer.9114 UR - http://www.ncbi.nlm.nih.gov/pubmed/29453187 ID - info:doi/10.2196/cancer.9114 ER - TY - JOUR AU - Kurahashi, M. Allison AU - Stinson, N. Jennifer AU - van Wyk, Margaret AU - Luca, Stephanie AU - Jamieson, Trevor AU - Weinstein, Peter AU - Cafazzo, A. Joseph AU - Lokuge, Bhadra AU - Cohen, Eyal AU - Rapoport, Adam AU - Husain, Amna PY - 2018/01/09 TI - The Perceived Ease of Use and Usefulness of Loop: Evaluation and Content Analysis of a Web-Based Clinical Collaboration System JO - JMIR Hum Factors SP - e2 VL - 5 IS - 1 KW - patient-centered care KW - patient participation KW - chronic disease KW - communication KW - internet communication tools KW - usability testing KW - interdisciplinary communication KW - health communication KW - continuity of patient care KW - patient care team KW - inventions N2 - Background: Patients with complex health care needs require the expertise of many health care providers. Communication, collaboration, and patient-centered care positively impact care quality and patient outcomes. Few technologies exist that facilitate collaboration between providers across settings of care and also engage the patient. We developed a Web-based clinical collaboration system, Loop, to address this gap. The likelihood of a technological system?s uptake is associated with its perceived ease of use and perceived usefulness. We engaged stakeholders in the conceptualization and development of Loop in an effort to maximize its intuitiveness and utility. Objective: This study aimed to report end users? perceptions about the ease of use and usefulness of Loop captured during usability tests of Loop. Methods: Participants represented three user types (patients, caregivers, and health care providers) recruited from three populations (adults with cancer, adolescents and young adults with cancer, and children with medical complexity). We conducted usability testing over three iterative cycles of testing and development in both laboratory-based and off-site environments. We performed a content analysis of usability testing transcripts to summarize and describe participant perceptions about the ease of use and usefulness of Loop. Results: Participants enjoyed testing Loop and were able to use the core functions?composing, posting, and reading messages?with little difficulty. They had difficulty interpreting certain visual cues and design elements or the purpose of some features. This difficulty negatively impacted perceived ease of use but was primarily limited to auxiliary features. Participants predicted that Loop could improve the efficiency and effectiveness of communication between care team members; however, this perceived usefulness could be compromised by disruptions to personal workflow such as additional time or task requirements. Conclusions: Loop was perceived to have value as a collaboration system; however, usability testing findings indicate that some design and functional elements need to be addressed to improve ease of use. Additionally, participant concerns highlight the need to consider how a system can be implemented so as to minimize impact on workflow and optimize usefulness. UR - http://humanfactors.jmir.org/2018/1/e2/ UR - http://dx.doi.org/10.2196/humanfactors.7882 UR - http://www.ncbi.nlm.nih.gov/pubmed/29317386 ID - info:doi/10.2196/humanfactors.7882 ER - TY - JOUR AU - Belkora, K. Jeffrey AU - Naguit, Marijoyce AU - Stupar, Lauren AU - Wiley, James AU - Volz, Shelley AU - O'Donnell, Sara PY - 2017/8/22 TI - The Effects of Coaching Patients to List Questions Before Visiting Cancer Specialists: Retrospective Evaluation of Visit Preparation in a Rural, Underserved Setting JO - J Participat Med SP - e15 VL - 9 IS - 1 KW - Visit preparation KW - self-efficacy KW - anxiety KW - question list KW - patient support KW - community-based participatory research KW - psycho-oncology. N2 - Background: A community-based organization implemented an evidence-based intervention to help rural cancer patients list questions before oncology visits. Objective: Was the question-listing intervention effective in reducing anxiety and increasing decision self-efficacy? Methods: The organization surveyed patients on decision self-efficacy (273 respondents, 99% response rate) and anxiety (190, 68%) before and after question-listing interventions delivered from 2006 ? 2011. We analyzed responses using two-sided paired t-tests at 5% significance and conducted linear regression to identify significant predictors of change. We examined predictors related to the patient (location, demographics, disease status and baseline decision self-efficacy and anxiety); the intervention (including interventionist case volume); and the visit (including type of doctor seen). Results: Question-listing was associated with higher mean decision self-efficacy (2.70/3.43 pre/post, 1-4 min-max, P<.001) and lower mean anxiety (7.26/5.87, 1-10 min-max, P<.001). Significant predictors of change in decision self-efficacy included: patient location; interventionist case volume; baseline decision self-efficacy and anxiety. Higher baseline anxiety was also associated with reductions in anxiety. Conclusions: In a sustained community-based implementation, the intervention helped patients prepare for oncology visits. Patients reported higher self-efficacy and lower anxiety. UR - http://jopm.jmir.org/2017/1/e15/ UR - http://dx.doi.org/10.2196/jopm.8949 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/jopm.8949 ER - TY - JOUR AU - Warner, L. Echo AU - Ding, Qian AU - Pappas, Lisa AU - Bodson, Julia AU - Fowler, Brynn AU - Mooney, Ryan AU - Kirchhoff, C. Anne AU - Kepka, Deanna PY - 2017/08/11 TI - Health Care Providers? Knowledge of HPV Vaccination, Barriers, and Strategies in a State With Low HPV Vaccine Receipt: Mixed-Methods Study JO - JMIR Cancer SP - e12 VL - 3 IS - 2 KW - health care provider KW - human papillomavirus KW - human papillomavirus vaccine KW - mixed methods KW - knowledge N2 - Background: Human papillomavirus (HPV) vaccination is below national goals in the United States. Health care providers are at the forefront of improving vaccination in the United States, given their close interactions with patients and parents. Objective: The objective of this study was to assess the associations between demographic and practice characteristics of the health care providers with the knowledge of HPV vaccination and HPV vaccine guidelines. Furthermore, our aim was to contextualize the providers? perceptions of barriers to HPV vaccination and strategies for improving vaccination in a state with low HPV vaccine receipt. Methods: In this mixed-methods study, participating providers (N=254) were recruited from statewide pediatric, family medicine, and nursing organizations in Utah. Participants completed a Web-based survey of demographics, practice characteristics, HPV vaccine knowledge (?10 correct vs 11-12 correct answers), and knowledge of HPV vaccine guidelines (correct vs incorrect). Demographic and practice characteristics were compared using chi-square and Fisher exact tests for HPV knowledge outcomes. Four open-ended questions pertaining to the barriers and strategies for improving HPV vaccination were content analyzed. Results: Family practice providers (52.2%, 71/136; P=.001), institutional or university clinics (54.0%, 20/37; P=.001), and busier clinics seeing 20 to 29 patients per day (50.0%, 28/56; P=.04) had the highest proportion of respondents with high HPV vaccination knowledge. Older providers aged 40 to 49 years (85.1%, 57/67; P=.04) and those who were a Vaccines for Children provider (78.7%, 133/169; P=.03) had the highest proportion of respondents with high knowledge of HPV vaccine recommendations. Providers perceived the lack of parental education to be the main barrier to HPV vaccination. They endorsed stronger, consistent, and more direct provider recommendations for HPV vaccination delivered to parents through printed materials available in clinical settings and public health campaigns. Hesitancy to recommend the HPV vaccine to patients persisted among some providers. Conclusions: Providers require support to eliminate barriers to recommending HPV vaccination in clinical settings. Additionally, providers endorsed the need for parental educational materials and instructions on framing HPV vaccination as a priority cancer prevention mechanism for all adolescents. UR - http://cancer.jmir.org/2017/2/e12/ UR - http://dx.doi.org/10.2196/cancer.7345 UR - http://www.ncbi.nlm.nih.gov/pubmed/28801303 ID - info:doi/10.2196/cancer.7345 ER - TY - JOUR AU - Dodd, Natalie AU - Carey, Leanne Mariko AU - Mansfield, Elise AU - Oldmeadow, Christopher PY - 2017/05/10 TI - Testing the Effectiveness of a Primary Care Intervention to Improve Uptake of Colorectal Cancer Screening: A Randomized Controlled Trial Protocol JO - JMIR Res Protoc SP - e86 VL - 6 IS - 5 KW - clinical trial KW - colorectal cancer KW - early detection of cancer KW - general practice KW - primary care KW - primary care provider N2 - Background: Screening for colorectal cancer (CRC) significantly reduces mortality associated with this disease. In Australia, the National Bowel Cancer Screening Program provides regular fecal occult blood tests (FOBT) for those aged 50 to 74 years, however, participation rates in the program have plateaued at 36%. Given low uptake in the National Bowel Cancer Screening Program, it is necessary to explore alternate methods to increase CRC screening rates. Primary care is a promising adjunct setting to test methods to increase CRC screening participation. Primary care guidelines support the recommendation and provision of CRC screening to primary care patients. Those in the National Bowel Cancer Screening Program target age range frequently present to their primary care provider. Objective: This study tests the effect that a multicomponent primary care?based intervention has on CRC screening uptake when compared to usual care. Methods: Primary care patients presenting for an appointment with their primary care provider complete a touchscreen survey to determine eligibility for the trial. Those aged 50 to 74 years, at average risk of CRC, with no history of CRC or inflammatory bowel disease, who have not had an FOBT in the past 2 years or a colonoscopy in the past 5 years are eligible to participate in the trial. Trial participants are randomized to the intervention or usual care group by day of attendance at the practice. The intervention consists of provision of an FOBT, printed information sheet, and primary care provider endorsement to complete the FOBT. The usual care group receives no additional care. Results: The primary outcome is completion of CRC screening 6 weeks after recruitment. The proportion of patients completing CRC screening will be compared between trial groups using a logistic regression model. Conclusions: CRC screening rates in Australia are suboptimal and interventions to increase screening participation are urgently required. This protocol describes the process of implementing a multicomponent intervention designed to increase CRC screening uptake in a primary care setting. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12616001299493; https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371136&isReview=true (Archived by WebCite at http://www.webcitation.org/6pL0VYIj6). Universal Trial Number U1111-1185-6120. UR - http://www.researchprotocols.org/2017/5/e86/ UR - http://dx.doi.org/10.2196/resprot.7432 UR - http://www.ncbi.nlm.nih.gov/pubmed/28490420 ID - info:doi/10.2196/resprot.7432 ER - TY - JOUR AU - Fissler, Tim AU - Bientzle, Martina AU - Cress, Ulrike AU - Kimmerle, Joachim PY - 2015/09/08 TI - The Impact of Advice Seekers? Need Salience and Doctors? Communication Style on Attitude and Decision Making: A Web-Based Mammography Consultation Role Play JO - JMIR Cancer SP - e10 VL - 1 IS - 2 KW - communication style KW - needs KW - need salience KW - attitude KW - decision-making KW - mammography screening KW - online consultation N2 - 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, ?2=.073) and decision making (F1,92=4.43, P=.038, ?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. UR - http://cancer.jmir.org/2015/2/e10/ UR - http://dx.doi.org/10.2196/cancer.4279 UR - http://www.ncbi.nlm.nih.gov/pubmed/28410160 ID - info:doi/10.2196/cancer.4279 ER -