TY - JOUR AU - Vergani, Laura AU - Marton, Giulia AU - Pizzoli, Maria Silvia Francesca AU - Monzani, Dario AU - Mazzocco, Ketti AU - Pravettoni, Gabriella PY - DA - 2019/03/19 TI - Training Cognitive Functions Using Mobile Apps in Breast Cancer Patients: Systematic Review JO - JMIR Mhealth Uhealth SP - e10855 VL - 7 IS - 3 KW - cognitive impairment KW - breast cancer KW - cognitive training KW - intervention KW - mobile-based interventions AB - Background: Breast cancer is an invalidating disease and its treatment can bring serious side effects that have a physical and psychological impact. Specifically, cancer treatment generally has a strong impact on cognitive function. In recent years, new technologies and eHealth have had a growing influence on health care and innovative mobile apps can be useful tools to deliver cognitive exercise in the patient?s home. Objective: This systematic review gives an overview of the state-of-the-art mobile apps aimed at training cognitive functions to better understand whether these apps could be useful tools to counteract cognitive impairment in breast cancer patients. Methods: We searched in a systematic way all the full-text articles from the PubMed and Embase databases. Results: We found eleven studies using mobile apps to deliver cognitive training. They included a total of 819 participants. App and study characteristics are presented and discussed, including cognitive domains trained (attention, problem solving, memory, cognitive control, executive function, visuospatial function, and language). None of the apps were specifically developed for breast cancer patients. They were generally developed for a specific clinical population. Only 2 apps deal with more than 1 cognitive domain, and only 3 studies focus on the efficacy of the app training intervention. Conclusions: These results highlight the lack of empirical evidence on the efficacy of currently available apps to train cognitive function. Cognitive domains are not well defined across studies. It is noteworthy that no apps are specifically developed for cancer patients, and their applicability to breast cancer should not be taken for granted. Future studies should test the feasibility, usability, and effectiveness of available cognitive training apps in women with breast cancer. Due to the complexity and multidimensionality of cognitive difficulties in this cancer population, it may be useful to design, develop, and implement an ad hoc app targeting cognitive impairment in breast cancer patients. UR - https://mhealth.jmir.org/2019/3/e10855/ DO - 10.2196/10855 UR - http://www.ncbi.nlm.nih.gov/pubmed/30888326 ID - info:doi/10.2196/10855 ER - TY - JOUR AU - Wright, Kevin AU - Fisher, Carla AU - Rising, Camella AU - Burke-Garcia, Amelia AU - Afanaseva, Dasha AU - Cai, Xiaomei PY - DA - 2019/03/07 TI - Partnering With Mommy Bloggers to Disseminate Breast Cancer Risk Information: Social Media Intervention JO - J Med Internet Res SP - e12441 VL - 21 IS - 3 KW - breast cancer KW - environment and public health KW - risk reduction behavior KW - blogging KW - social networking KW - social media KW - health communication KW - information dissemination AB - Background: Women are concerned about reducing their breast cancer risk, particularly if they have daughters. Social media platforms, such as blogs written by mothers, are increasingly being recognized as a channel that women use to make personal and family health?related decisions. Government initiatives (eg, Interagency Breast Cancer and Environmental Research Coordinating Committee) and researchers have called for scientists and the community to partner and disseminate scientifically and community-informed environmental risk information. Objective: We developed and evaluated a blog intervention to disseminate breast cancer and environmental risk information to mothers. We teamed with mommy bloggers to disseminate a message that we developed and tailored for mothers and daughters based on scientific evidence from the Breast Cancer and the Environment Research Program (BCERP). We posited that the intervention would influence women?s exposure to, acceptance of, and beliefs about environmental risks while promoting their intention to adopt risk-reducing behaviors. Methods: Using a quasi-experimental design, we recruited 75 mommy bloggers to disseminate the breast cancer risk message on their respective blogs and examined the impact of the intervention on (1) readers exposed to the intervention (n=445) and (2) readers not exposed to the intervention (comparison group; n=353). Results: Following the intervention, blog reader scores indicating exposure to the breast cancer risk and prevention information were greater than scores of blog readers who were not exposed (or did not recall seeing the message; mean 3.92, SD 0.85 and mean 3.45, SD 0.92, respectively; P<.001). Readers who recalled the intervention messages also had higher breast cancer risk and prevention information satisfaction scores compared with readers who did not see (or recall) the messages (mean 3.97, SD 0.75 and mean 3.57, SD 0.94, respectively; P<.001). Blog readers who recalled seeing the intervention messages were significantly more likely to share the breast cancer risk and prevention information they read, with their daughters specifically, than readers who did not recall seeing them (?21=8.1; P=.004). Those who recalled seeing the intervention messages reported significantly higher breast cancer risk and prevention information influence scores, indicative of behavioral intentions, than participants who did not recall seeing them (mean 11.22, SD 2.93 and mean 10.14, SD 3.24, respectively; P=.003). Most women ranked Facebook as their first choice for receiving breast cancer risk information. Conclusions: Results indicated that blog readers who were exposed to (and specifically recalled) the BCERP-adapted intervention messages from mommy bloggers had higher breast cancer risk and prevention information exposure scores and higher breast cancer risk and prevention information satisfaction and influence scores than those who did not see (or recall) them. Mommy bloggers may be important opinion leaders for some women and key to enhancing the messaging, delivery, and impact of environmental breast cancer risk information on mothers. UR - https://www.jmir.org/2019/3/e12441/ DO - 10.2196/12441 UR - http://www.ncbi.nlm.nih.gov/pubmed/30843866 ID - info:doi/10.2196/12441 ER - TY - JOUR AU - Wu, San Hoi AU - Gal, Roxanne AU - van Sleeuwen, C. Niek AU - Brombacher, C. Aarnout AU - IJsselsteijn, A. Wijnand AU - May, M. Anne AU - Monninkhof, M. Evelyn PY - DA - 2019/02/21 TI - Breast Cancer Survivors? Experiences With an Activity Tracker Integrated Into a Supervised Exercise Program: Qualitative Study JO - JMIR Mhealth Uhealth SP - e10820 VL - 7 IS - 2 KW - breast cancer KW - activity trackers KW - physical activity KW - sedentary behavior KW - qualitative research AB - Background: There is growing evidence that physical activity is related to a better prognosis after a breast cancer diagnosis, whereas sedentary behavior is associated with worse outcomes. It is therefore important to stimulate physical activity and reduce sedentary time among patients with breast cancer. Activity trackers offer a new opportunity for interventions directed at stimulating physical activity behavior change. Objective: This study aimed to explore the experience of patients with breast cancer who used an activity tracker in addition to a supervised exercise intervention in the randomized UMBRELLA Fit trial. Methods: A total of 10 patients with breast cancer who completed cancer treatment participated in semistructured in-depth interviews about their experience with and suggestions for improvements for the Jawbone UP2 activity tracker. Results: The activity tracker motivated women to be physically active and created more awareness of their (sedentary) lifestyles. The women indicated that the automatically generated advice (received via the Jawbone UP app) lacked individualization and was not applicable to their personal situations (ie, having been treated for cancer). Furthermore, women felt that the daily step goal was one-dimensional, and they preferred to incorporate other physical activity goals. The activity tracker?s inability to measure strength exercises was a noted shortcoming. Finally, women valued personal feedback about the activity tracker from the physiotherapist. Conclusions: Wearing an activity tracker raised lifestyle awareness in patients with breast cancer. The women also reported additional needs not addressed by the system. Potential improvements include a more realistic total daily physical activity representation, personalized advice, and personalized goals. UR - https://mhealth.jmir.org/2019/2/e10820/ DO - 10.2196/10820 UR - http://www.ncbi.nlm.nih.gov/pubmed/30789349 ID - info:doi/10.2196/10820 ER - TY - JOUR AU - Jongerius, Chiara AU - Russo, Selena AU - Mazzocco, Ketti AU - Pravettoni, Gabriella PY - DA - 2019/02/11 TI - Research-Tested Mobile Apps for Breast Cancer Care: Systematic Review JO - JMIR Mhealth Uhealth SP - e10930 VL - 7 IS - 2 KW - breast cancer care KW - breast cancer management KW - breast cancer prevention KW - breast cancer survivorship KW - mobile applications KW - mHealth applications AB - Background: The use of mobile health (mHealth) apps in clinical settings is increasing widely. mHealth has been used to promote prevention, improve early detection, manage care, and support survivors and chronic patients. However, data on the efficacy and utility of mHealth apps are limited. Objective: The main objective of this review was to provide an overview of the available research-tested interventions using mHealth apps and their impact on breast cancer care. Methods: A systematic search of Medline, PsycINFO, Embase, and Scopus was performed to identify relevant studies. From the selected studies, the following information was extracted: authors, publication date, study objectives, study population, study design, interventions? features, outcome measures, and results. Results: We identified 29 empirical studies that described a health care intervention using an mHealth app in breast cancer care. Of these, 7 studies were about the use of an mHealth application in an intervention for breast cancer prevention and early detection, 12 targeted care management, and 10 focused on breast cancer survivors. Conclusions: Our results indicate consistent and promising findings of interventions using mHealth apps that target care management in breast cancer. Among the categories of mHealth apps focusing on survivorship, mHealth-based interventions showed a positive effect by promoting weight loss, improving the quality of life, and decreasing stress. There is conflicting and less conclusive data on the effect of mHealth apps on psychological dimensions. We advocate further investigation to confirm and strengthen these findings. No consistent evidence for the impact of interventions using mHealth apps in breast cancer prevention and early detection was identified due to the limited number of studies identified by our search. Future research should continue to explore the impact of mHealth apps on breast cancer care to build on these initial recommendations. UR - http://mhealth.jmir.org/2019/2/e10930/ DO - 10.2196/10930 UR - http://www.ncbi.nlm.nih.gov/pubmed/30741644 ID - info:doi/10.2196/10930 ER - TY - JOUR AU - Marcu, Afrodita AU - Muller, Cecile AU - Ream, Emma AU - Whitaker, L. Katriina PY - DA - 2019/02/06 TI - Online Information-Seeking About Potential Breast Cancer Symptoms: Capturing Online Behavior With an Internet Browsing Tracking Tool JO - J Med Internet Res SP - e12400 VL - 21 IS - 2 KW - breast cancer KW - health information KW - internet search KW - online information seeking AB - Background: People engage in health information-seeking online when experiencing unusual or unfamiliar bodily changes. It is not well understood how people consult the internet for health information after the onset of unfamiliar symptoms and before receiving a potential diagnosis and how online information-seeking can help people appraise their symptoms. This lack of evidence may be partly due to methodological limitations in capturing in real time the online information-seeking process. Objective: We explored women?s symptom attribution and online health information-seeking in response to a hypothetical and unfamiliar breast change suggestive of cancer (nipple rash). We also aimed to establish the feasibility of capturing in real time the online information-seeking process with a tool designed to track participant online searches and visited websites, the Vizzata browser tracker. Methods: An online survey was completed by 56 cancer-free women (mean age 60.34 [SD 7.73] years) responding to a scenario asking them to imagine noticing a red scaly rash on the nipple. Participants were asked to make symptom attributions when presented with the scenario (T1) and again after seeking information online (T2). The online tracking tool, embedded in the survey, was used to capture in real time participant search terms and accessed websites. Results: The tracking tool captured the search terms and accessed websites of most of the participants (46/56, 82%). For the rest (10/56, 18%), there was evidence of engagement in online information-seeking (eg, medical terminology and cancer attribution at T2) despite their searching activity not being recorded. A total of 25 participants considered cancer as a potential cause for the nipple rash at T1, yet only one of these used cancer as a search term. Most participants (40/46, 87%) used rash-related search terms, particularly nipple rash and rash on nipple. The majority (41/46, 89%) accessed websites containing breast cancer information, with the National Health Service webpage ?Paget disease of the nipple? being the most visited one. At T2, after engaging in the internet search task, more participants attributed the nipple rash to breast cancer than at T1 (37/46, 66% vs 25/46, 45%), although a small number of participants (6/46) changed from making a cancer attribution at T1 to a noncancer one at T2. Conclusions: Making a cancer attribution for an unfamiliar breast change did not necessarily translate into cancer-termed searches. Equally, not all internet searches led to a cancer attribution. The findings suggest that online information-seeking may not necessarily help women who experience unfamiliar breast cancer symptoms understand their condition. Despite some technical issues, this study showed that it is feasible to use an online browser tracking tool to capture in real time information-seeking about unfamiliar symptoms. UR - http://www.jmir.org/2019/2/e12400/ DO - 10.2196/12400 UR - http://www.ncbi.nlm.nih.gov/pubmed/30724741 ID - info:doi/10.2196/12400 ER - TY - JOUR AU - Lee, Tzu-I AU - Sheu, Shuh-Jen AU - Chang, Hsueh-Chin AU - Hung, Yu-Ting AU - Tseng, Ling-Ming AU - Chou, Shin-Shang AU - Liang, Te-Hsin AU - Liu, Hui-Ju AU - Lu, Hui-Ling AU - Chen, Mei-Chun AU - Liu, Ying-Chun AU - Tsai, Chi-Shan AU - Sun, Jui-Chiung PY - DA - 2019/02/04 TI - Developing a Web-Based Comic for Newly Diagnosed Women With Breast Cancer: An Action Research Approach JO - J Med Internet Res SP - e10716 VL - 21 IS - 2 KW - action research KW - breast cancer KW - comic KW - narrative AB - Background: Personal narratives have been seen as a useful way of communicating about cancer treatment options and providing recovery information. Many printed versions of such material are available, including comics that explore the individual memories of patients who have gone through cancer treatment. These studies have been used to orientate patients, patients? relatives, and physicians. However, only a few Web-based comics have been specifically designed for patients with breast cancer and used as aids to decision making. Objective: We aimed to describe the developmental process of creating an animated comic as a Web-based surgery decision-making tool; the comic was aimed at illustrating the feelings, thoughts, and meanings when a patient suffers from breast cancer. This was done by recounting the symptoms, diagnostic process, treatments, and treatment effects of such women from the diagnosis stage onward. Methods: Using cycles of planning, action, evaluation, and reflection, which involved collaborative work, action research was conducted to develop a Web-based animated comic. The stages of action research consisted of (1) semistructured and in-depth interviews to collect experiences of women with breast cancer; (2) construction of an animated comic by editors, graphics designers, dubbers, and information technology engineers; (3) redrawing of pictures of the comic after gathering feedback from a breast surgeon; and (4) evaluation of the Web-based animated comic using 6 patient focus groups. Results: The comic was produced and showcased on the website ?The Network of Making-decision Aids for Breast Cancer Surgery?; the comic was accompanied by soft music and audio explanations. The comic functions as a personal statement that describes experiencing breast cancer. The animated comic consists of 8 chapters, based on the 8 themes deducted from the findings obtained during the analysis of relevant interviews. The 8 chapters include (1) the appearance of a lump; (2) confirmation by medical diagnosis; (3) the uncertainty of waiting (4) fear of life-threatening disease; (5) choosing life over despair; (6) being brave and deciding to undergo treatment; (7) choosing the type of surgery; and (8) being reborn. Conclusions: Using action research, this study illustrated that the comic that sheds light on issues of feelings, emotions, and thoughts that are present when a woman is diagnosed with breast cancer and provides a communication medium to explain the steps in the process. Meanwhile, it implies that hope will be able to overcome the challenges that will be faced. Within the Web-based decision aid for patients with breast cancer, the animated comic acts as an information resource and is aimed at patients? understanding of impacts of emotions arising when suffering from breast cancer. It is potentially applicable as a therapeutic tool that facilitates self-reflection and self-healing among newly diagnosed patients with breast cancer. UR - https://www.jmir.org/2019/2/e10716/ DO - 10.2196/10716 UR - http://www.ncbi.nlm.nih.gov/pubmed/30714947 ID - info:doi/10.2196/10716 ER - TY - JOUR AU - Hung, Yu-Ting AU - Wu, Ching-Fang AU - Liang, Te-Hsin AU - Chou, Shin-Shang AU - Chen, Guan-Liang AU - Wu, Pei-Ni AU - Su, Guan-Rong AU - Jang, Tsuey-Huah AU - Liu, Chang-Yi AU - Wang, Ching-Yen AU - Tseng, Ling-Ming AU - Sheu, Shuh-Jen PY - DA - 2019/02/04 TI - Developing a Decision-Aid Website for Breast Cancer Surgery: An Action Research Approach JO - J Med Internet Res SP - e10404 VL - 21 IS - 2 KW - breast cancer KW - surgery-related decision making KW - website KW - action research AB - Background: Patients with early-stage breast cancer have numerous options when choosing the type of breast surgery method to be applied. Each of these options lead to a similar long-term survival rate, but result in significant differences in appearance, function, cost, recurrence rate, and various other relevant considerations. However, the time available for detailed communication with each patient is often limited in clinics, which puts these women under great psychological stress and can hinder their surgery-related decision making. Objective: The objective of this study was to develop a multipurpose surgery decision-making website providing medical information, psychological support, and decision-related simulation for women during breast cancer surgery-related decision making. Methods: Using the 4 steps of action research, which involve multigroup teamwork via regular team meetings, the following were performed: (1) Planning: searching, analyzing, and evaluating health websites to consensually decide the major infrastructure; (2) Action: work was performed simultaneously in 4 groups, which consisted of medical information collection and editing, patient interviews and data extraction, webpage content design, and programming to create or host the website; (3) Evaluation: the website was tested by clinical experts and focus groups of former breast cancer patients to assess its effectiveness and pinpoint appropriate improvements; and (4) Reflection: constant dialogue was conducted between the various participants at each step, which was used as the foundation and motivation of next plan-action-evaluation-reflection circle. Results: Using the action research approach, we completed the development of our website, which includes the following: (1) ?Woman?s Voice??an animated comic depicting the story of a female breast cancer patient with interspersed questions for the users that will help them better empathize with the experience; (2) ?Cancer Information Treasure House??providing breast cancer surgery-related information through text, tables, pictures and a presentation video; (3) ?Decision-making Simulator??helping patients think through and check the pros and cons of the different surgical options via visual-based interactions including ?Stairs Climbing? and ?Fruit of Hope?; and (4) ?Recommended Links??providing reliable websites for further reference. Additionally, we have further improved the website based on the feedback received from postsurgery breast cancer patients and clinicians. We hope to continue improving to better meet both the patients? and health providers? needs and become a practical decision-making aid for patients undergoing breast cancer surgery. Conclusions: We have created the first breast cancer surgery decision-making assistance tool in Taiwan using a ?Web-based? and multifunctional website design. This site aims to provide health care knowledge, psychological healing, and emotional support functions, as well as decision-making capability enhancement simulations. We look forward to assisting breast cancer patients in their decision-making process and expect our website to increase patient?s autonomy and improve their communication with clinicians. UR - https://www.jmir.org/2019/2/e10404/ DO - 10.2196/10404 UR - http://www.ncbi.nlm.nih.gov/pubmed/30714941 ID - info:doi/10.2196/10404 ER - TY - JOUR AU - Matthies, Maria Lina AU - Taran, Florin-Andrei AU - Keilmann, Lucia AU - Schneeweiss, Andreas AU - Simoes, Elisabeth AU - Hartkopf, D. Andreas AU - Sokolov, N. Alexander AU - Walter, B. Christina AU - Sickenberger, Nina AU - Wallwiener, Stephanie AU - Feisst, Manuel AU - Gass, Paul AU - Lux, P. Michael AU - Schuetz, Florian AU - Fasching, A. Peter AU - Sohn, Christof AU - Brucker, Y. Sara AU - Graf, Joachim AU - Wallwiener, Markus PY - DA - 2019/01/22 TI - An Electronic Patient-Reported Outcome Tool for the FACT-B (Functional Assessment of Cancer Therapy-Breast) Questionnaire for Measuring the Health-Related Quality of Life in Patients With Breast Cancer: Reliability Study JO - J Med Internet Res SP - e10004 VL - 21 IS - 1 KW - breast cancer KW - ePRO measurement KW - FACT-B KW - HRQoL KW - patient-reported outcomes KW - reliability of ePRO AB - Background: The most frequent malignant disease in women is breast cancer. In the metastatic setting, quality of life is the primary therapeutic goal, and systematic treatment has only a limited effect on survival rates; therefore, the concept of the health-related quality of life (HRQoL) and measurement of patient-reported outcomes (PROs) are gaining more and more importance in the therapy setting of diseases such as breast cancer. One of the frequently used questionnaires for measuring the HRQoL in patients with breast cancer is the Functional Assessment of Cancer Therapy-Breast (FACT-B). Currently, paper-based surveys still predominate, as only a few reliable and validated electronic-based questionnaires are available. ePRO tools for the FACT-B questionnaire with proven reliability are missing so far. Objective: The aim of this study was to analyze the reliability of tablet-based measurement of FACT-B in the German language in adjuvant (curative) and metastatic breast cancer patients. Methods: Paper- and tablet-based questionnaires were completed by a total of 106 female adjuvant and metastatic breast cancer patients. All patients were required to complete the electronically based (ePRO) and paper-based version of the FACT-B. A frequency analysis was performed to determine descriptive sociodemographic characteristics. Both dimensions of reliability (parallel forms reliability using Wilcoxon test and test of internal consistency using Spearman ?) and agreement rates for single items, Kendall tau for each subscale, and total score were analyzed. Results: High correlations were shown for both dimensions of reliability (parallel forms reliability and internal consistency) in the patients? response behavior between paper-based and electronically based questionnaires. Regarding the reliability test of parallel forms, no significant differences were found in 35 of 37 single items, while significant correlations in the test for consistency were found in all 37 single items, in all 5 sum individual item subscale scores, as well as in total FACT-B score. Conclusions: The ePRO version of the FACT-B questionnaire is reliable for patients with breast cancer in both adjuvant and metastatic settings, showing highly significant correlations with the paper-based version in almost all questions all subscales and the total score. UR - http://www.jmir.org/2019/1/e10004/ DO - 10.2196/10004 UR - http://www.ncbi.nlm.nih.gov/pubmed/30668517 ID - info:doi/10.2196/10004 ER - TY - JOUR AU - Karsten, M. Maria AU - Speiser, Dorothee AU - Hartmann, Claudia AU - Zeuschner, Nele AU - Lippold, Kai AU - Kiver, Verena AU - Gocke, Peter AU - Kirchberger, Valerie AU - Blohmer, Jens-Uwe PY - DA - 2018/12/20 TI - Web-Based Patient-Reported Outcomes Using the International Consortium for Health Outcome Measurement Dataset in a Major German University Hospital: Observational Study JO - JMIR Cancer SP - e11373 VL - 4 IS - 2 KW - breast cancer KW - International Council Health Outcome Measurement KW - mobile phone KW - patient-reported outcomes AB - Background: Collecting patient-reported outcome (PRO) data systematically enables objective evaluation of treatment and its related outcomes. Using disease-specific questionnaires developed by the International Consortium for Health Outcome Measurement (ICHOM) allows for comparison between physicians, hospitals, and even different countries. Objective: This pilot project aimed to establish a digital system to measure PROs for new patients with breast cancer who attended the Charité Breast Center This approach should serve as a blueprint to further expand the PRO measurement to other disease entities and departments. Methods: In November 2016, we implemented a Web-based system to collect PRO data at Charité Breast Center using the ICHOM dataset. All new patients at the Breast Center were enrolled and answered a predefined set of questions using a tablet computer. Once they started their treatment at Charité, automated emails were sent to the patients at predefined treatment points. Those emails contained a Web-based link through which they could access and answer questionnaires. Results: By now, 541 patients have been enrolled and 2470 questionnaires initiated. Overall, 9.4% (51/541) of the patients were under the age of 40 years, 49.7% (269/541) between 40 and 60 years, 39.6% (214/541) between 60 and 80 years, and 1.3% (7/541) over the age of 80 years. The average return rate of questionnaires was 67.0%. When asked about the preference regarding paper versus Web-based questionnaires, 6.0% (8/134) of the patients between 50 and 60 years, 6.0% (9/150) between 60 and 70 years, and 12.7% (9/71) over the age of 70 years preferred paper versions. Conclusions: Measuring PRO in patients with breast cancer in an automated electronic version is possible across all age ranges while simultaneously achieving a high return rate. UR - http://cancer.jmir.org/2018/2/e11373/ DO - 10.2196/11373 UR - http://www.ncbi.nlm.nih.gov/pubmed/30573450 ID - info:doi/10.2196/11373 ER - TY - JOUR AU - Jones, Josette AU - Pradhan, Meeta AU - Hosseini, Masoud AU - Kulanthaivel, Anand AU - Hosseini, Mahmood PY - DA - 2018/11/29 TI - Novel Approach to Cluster Patient-Generated Data Into Actionable Topics: Case Study of a Web-Based Breast Cancer Forum JO - JMIR Med Inform SP - e45 VL - 6 IS - 4 KW - data interpretation KW - natural language processing KW - patient-generated information KW - social media KW - statistical analysis KW - infodemiology AB - Background: The increasing use of social media and mHealth apps has generated new opportunities for health care consumers to share information about their health and well-being. Information shared through social media contains not only medical information but also valuable information about how the survivors manage disease and recovery in the context of daily life. Objective: The objective of this study was to determine the feasibility of acquiring and modeling the topics of a major online breast cancer support forum. Breast cancer patient support forums were selected to discover the hidden, less obvious aspects of disease management and recovery. Methods: First, manual topic categorization was performed using qualitative content analysis (QCA) of each individual forum board. Second, we requested permission from the Breastcancer.org Community for a more in-depth analysis of the postings. Topic modeling was then performed using open source software Machine Learning Language Toolkit, followed by multiple linear regression (MLR) analysis to detect highly correlated topics among the different website forums. Results: QCA of the forums resulted in 20 categories of user discussion. The final topic model organized >4 million postings into 30 manageable topics. Using qualitative analysis of the topic models and statistical analysis, we grouped these 30 topics into 4 distinct clusters with similarity scores of ?0.80; these clusters were labeled Symptoms & Diagnosis, Treatment, Financial, and Family & Friends. A clinician review confirmed the clinical significance of the topic clusters, allowing for future detection of actionable items within social media postings. To identify the most significant topics across individual forums, MLR demonstrated that 6 topics?based on the Akaike information criterion values ranging from ?642.75 to ?412.32?were statistically significant. Conclusions: The developed method provides an insight into the areas of interest and concern, including those not ascertainable in the clinic. Such topics included support from lay and professional caregivers and late side effects of therapy that consumers discuss in social media and may be of interest to clinicians. The developed methods and results indicate the potential of social media to inform the clinical workflow with regards to the impact of recovery on daily life. UR - http://medinform.jmir.org/2018/4/e45/ DO - 10.2196/medinform.9162 UR - http://www.ncbi.nlm.nih.gov/pubmed/30497991 ID - info:doi/10.2196/medinform.9162 ER - TY - JOUR AU - Lo, L. Louisa AU - Collins, M. Ian AU - Bressel, Mathias AU - Butow, Phyllis AU - Emery, Jon AU - Keogh, Louise AU - Weideman, Prue AU - Steel, Emma AU - Hopper, L. John AU - Trainer, H. Alison AU - Mann, B. Gregory AU - Bickerstaffe, Adrian AU - Antoniou, C. Antonis AU - Cuzick, Jack AU - Phillips, Kelly-Anne PY - DA - 2018/11/07 TI - The iPrevent Online Breast Cancer Risk Assessment and Risk Management Tool: Usability and Acceptability Testing JO - JMIR Formativ Res SP - e24 VL - 2 IS - 2 KW - clinical decision support KW - breast cancer KW - BRCA1 gene KW - BRCA2 gene KW - risk KW - preventive health KW - screening AB - Background: iPrevent estimates breast cancer (BC) risk and provides tailored risk management information. Objective: The objective of this study was to assess the usability and acceptability of the iPrevent prototype. Methods: Clinicians were eligible for participation in the study if they worked in primary care, breast surgery, or genetics clinics. Female patients aged 18-70 years with no personal cancer history were eligible. Clinicians were first familiarized with iPrevent using hypothetical paper-based cases and then actor scenarios; subsequently, they used iPrevent with their patients. Clinicians and patients completed the System Usability Scale (SUS) and an Acceptability questionnaire 2 weeks after using iPrevent; patients also completed measures of BC worry, anxiety, risk perception, and knowledge pre- and 2 weeks post-iPrevent. Data were summarized using descriptive statistics. Results: The SUS and Acceptability questionnaires were completed by 19 of 20 clinicians and 37 of 43 patients. Usability was above average (SUS score >68) for 68% (13/19) clinicians and 76% (28/37) patients. The amount of information provided by iPrevent was reported as ?about right? by 89% (17/19) clinicians and 89% (33/37) patients and 95% (18/19) and 97% (36/37), respectively, would recommend iPrevent to others, although 53% (10/19) clinicians and 27% (10/37) patients found it too long. Exploratory analyses suggested that iPrevent could improve risk perception, decrease frequency of BC worry, and enhance BC prevention knowledge without changing state anxiety. Conclusions: The iPrevent prototype demonstrated good usability and acceptability. Because concerns about length could be an implementation barrier, data entry has been abbreviated in the publicly available version of iPrevent. UR - http://formative.jmir.org/2018/2/e24/ DO - 10.2196/formative.9935 UR - http://www.ncbi.nlm.nih.gov/pubmed/30684421 ID - info:doi/10.2196/formative.9935 ER - TY - JOUR AU - Katapodi, C. Maria AU - Jung, Miyeon AU - Schafenacker, M. Ann AU - Milliron, J. Kara AU - Mendelsohn-Victor, E. Kari AU - Merajver, D. Sofia AU - Northouse, L. Laurel PY - DA - 2018/04/13 TI - Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study JO - JMIR Cancer SP - e7 VL - 4 IS - 1 KW - BRCA families KW - family-based intervention study KW - Web-based intervention study KW - psycho-educational and skills-building intervention study KW - communication and coping KW - patient decision-aid KW - genetic testing AB - Background: Carriers of breast cancer gene (BRCA) mutations are asked to communicate genetic test results to their biological relatives to increase awareness of cancer risk and promote use of genetic services. This process is highly variable from family to family. Interventions that support communication of genetic test results, coping, and offer decision support in families harboring a pathogenic variant may contribute to effective management of hereditary cancer. Objective: The aim of this paper was to describe the development of the Family Gene Toolkit, a Web-based intervention targeting BRCA carriers and untested blood relatives, designed to enhance coping, family communication, and decision making. Methods: We present findings from focus groups regarding intervention acceptability and participant satisfaction and from a pre-post pilot study with random allocation to a wait-listed control group regarding intervention feasibility and usability. Results: The Family Gene Toolkit was developed by a multidisciplinary team as a psycho-educational and skills-building intervention. It includes two live webinar sessions and a follow-up phone call guided by a certified genetic counselor and a master?s prepared oncology nurse. Each live webinar includes two modules (total four modules) presenting information about BRCA mutations, a decision aid for genetic testing, and two skill-building modules for effective coping and family communication. Participants in focus groups (n=11) were highly satisfied with the intervention, reporting it to be useful and describing clearly the important issues. From the 12 dyads recruited in the pre-post pilot study (response rate 12/52, 23%), completion rate was 71% (10/14) for intervention and 40% (4/10) for wait-listed control groups. Conclusions: Acceptability and satisfaction with the Family Gene Toolkit is high. On the basis of the findings from usability and feasibility testing, modifications on timing, delivery mode, and recruitment methods have been implemented. Trial Registration: ClinicalTrials.gov NCT02154633; https://clinicaltrials.gov/ct2/show/NCT02154633 (Archived by WebCite at http://www.webcitation.org/6yYNvLPjv) UR - http://cancer.jmir.org/2018/1/e7/ DO - 10.2196/cancer.9210 UR - http://www.ncbi.nlm.nih.gov/pubmed/29653920 ID - info:doi/10.2196/cancer.9210 ER - TY - JOUR AU - Tokosi, O. Temitope AU - Fortuin, Jill AU - Douglas, S. Tania PY - DA - 2017/12/21 TI - The Impact of mHealth Interventions on Breast Cancer Awareness and Screening: Systematic Review Protocol JO - JMIR Res Protoc SP - e246 VL - 6 IS - 12 KW - mHealth KW - breast cancer KW - women KW - awareness KW - screening AB - Background: Mobile health (mHealth) is the use of mobile communication technologies to promote health by supporting health care practices (eg, health data collection, delivery of health care information). mHealth technologies (such as mobile phones) can be used effectively by health care practitioners in the distribution of health information and have the potential to improve access to and quality of health care, as well as reduce the cost of health services. Current literature shows limited scientific evidence related to the benefits of mHealth interventions for breast cancer, which is the leading cause of cancer deaths in women worldwide and contributes a large proportion of all cancer deaths, especially in developing countries. Women, especially in low- and middle-income countries (LMICs), are faced with low odds of surviving breast cancer. This finding is likely due to multiple factors related to health systems: low priority of women?s health and cancer on national health agendas; lack of awareness that breast cancer can be effectively treated if detected early; and societal, cultural, and religious factors that are prevalent in LMICs. The proposed systematic review will examine the impact of mHealth interventions on breast cancer awareness and screening among women aged 18 years and older. Objective: The objectives of this study are to identify and describe the various mHealth intervention strategies that are used for breast cancer, and assess the impact of mHealth strategies on breast cancer awareness and screening. Methods: Literature from various databases such as MEDLINE, EMBASE, PsycINFO, CINAHL, and Cochrane Central Register of Controlled Trials will be examined. Trial registers, reports, and unpublished theses will also be included. All mobile technologies such as cell phones, personal digital assistants, and tablets that have short message service, multimedia message service, video, and audio capabilities will be included. mHealth is the primary intervention. The search strategy will include keywords such as ?mHealth,? ?breast cancer,? ?awareness,? and ?screening,? among other medical subject heading terms. Articles published from January 1, 1964 to December 31, 2016 will be eligible for inclusion. Two authors will independently screen and select studies, extract data, and assess the risk of bias, with discrepancies resolved by dialogue involving a third author. We will assess statistical heterogeneity by examining the types of participants, interventions, study designs, and outcomes in each study, and pool studies judged to be statistically homogeneous. In the assessment of heterogeneity, a sensitivity analysis will be considered to explore statistical heterogeneity. Statistical heterogeneity will be investigated using the Chi-square test of homogeneity on Cochrane's Q statistic and quantified using the I-squared statistic. Results: The search strategy will be refined with the assistance of an information specialist from November 1, 2017 to January 31, 2018. Literature searches will take place from February 2018 to April 2018. Data extraction and capturing in Review Manager (RevMan, Version 5.3) will take place from May 1, 2018 to July 31, 2018. The final stages will include analyses and writing, which is anticipated occur between August 2018 and October 2018. Conclusions: The knowledge derived from this study will inform health care stakeholders, including researchers, policy makers, investors, health professionals, technologists, and engineers, on the impact of mHealth interventions on breast cancer screening and awareness. Trial Registration: Prospero registration number CRD42016050202 UR - http://www.researchprotocols.org/2017/12/e246/ DO - 10.2196/resprot.8043 UR - http://www.ncbi.nlm.nih.gov/pubmed/29269341 ID - info:doi/10.2196/resprot.8043 ER - TY - JOUR AU - Puigpinos-Riera, Rosa AU - Continente, Xavier AU - Serral, Gemma AU - Bargalló, Xavi AU - Doménech, Montserrat AU - Espinosa-Bravo, Martín AU - Grau, Jaume AU - Maciŕ, Francesc AU - Manzanera, Rafael AU - Pla, Margarida AU - Quintana, Jesus M. AU - Sala, Maria AU - Vidal, Eulalia PY - DA - 2017/12/18 TI - Influence of Social Determinants, Lifestyle, Emotional Well-Being and the Use of Unconventional Therapies in Breast Cancer Progression in a Cohort of Women in Barcelona: Protocol for the DAMA Cohort JO - JMIR Res Protoc SP - e249 VL - 6 IS - 12 KW - breast cancer KW - cohort study AB - Background: Breast cancer continues to be the most commonly diagnosed cancer in women. Breast cancer survivors face numerous problems, especially after completing the first year of intense treatment. We present the protocol for an ongoing study to analyze the impact of a series of factors on breast cancer survival related to lifestyle, emotional well-being, and use of complementary and alternative medicine (CAM). Objective: We aim to analyze the influence of social determinants, lifestyle changes, emotional well-being, and use of CAM in the progression of breast cancer in women diagnosed with breast cancer between 2003 and 2013 in Barcelona, Spain. Methods: We will perform a mixed cohort study (prospective and retrospective) of women diagnosed with breast cancer, created using a convenience sample in which we study the evolution of the disease (relapse, death, or remaining disease-free). Once identified, we sent the women information about the study and an informed consent form that they are required to sign in order to participate; a total of 2235 women were recruited. We obtained the following information from all participants: sociodemographic profile via a phone interview, and a self-administered survey of information about the study?s objectives (lifestyles, emotional well-being, health care services, and the use of CAM). Lastly, we examined clinical records to obtain data on the tumor at the time of diagnosis, the treatment received, the occurrence of relapses (if any), and the tumor typology. We present data on the women?s social profile based on descriptive data obtained from the telephone interview (welcome survey). Results: Based on the welcome survey, which was completed by 2712 women, 14.42% (391/2712) of respondents were <50 years of age, 45.50% (1234/2712) were between 50 and 65 years of age, and 40.08% (1087/2712) were >65 years of age. A total of 43.69% (1185/2712) belonged to the highest social classes (I and II), 31.27% (848/2712) to the middle class (III), and 23.49% (637/2712) to the working classes (IV and V). Approximately 22.71% (616/2712) lived alone, 38.31% (1039/2712) lived with one person, and 38.97% (1057/2712) lived with two or more people. Conclusions: We obtained information from a large cohort of women, but this study has limitations related to the convenience sampling strategy, one of which is reduced representativeness. Conversely, being a self-administered survey, the study introduces biases, especially from respondents that answered on paper. However, the information that the study provides will serve as the basis for designing future interventions aimed at improving the knowledge gaps indicated for women with breast cancer. UR - http://www.researchprotocols.org/2017/12/e249/ DO - 10.2196/resprot.7653 UR - http://www.ncbi.nlm.nih.gov/pubmed/29254913 ID - info:doi/10.2196/resprot.7653 ER - TY - JOUR AU - Paxton, J. Raheem AU - Hajek, Richard AU - Newcomb, Patricia AU - Dobhal, Megha AU - Borra, Sujana AU - Taylor, C. Wendell AU - Parra-Medina, Deborah AU - Chang, Shine AU - Courneya, S. Kerry AU - Block, Gladys AU - Block, Torin AU - Jones, A. Lovell PY - DA - 2017/09/21 TI - A Lifestyle Intervention via Email in Minority Breast Cancer Survivors: Randomized Parallel-Group Feasibility Study JO - JMIR Cancer SP - e13 VL - 3 IS - 2 KW - breast neoplasm KW - African Americans KW - diet KW - feasibility study KW - physical activity KW - posture KW - program evaluation KW - Internet KW - computer tailoring KW - email AB - Background: Our data have indicated that minority breast cancer survivors are receptive to participating in lifestyle interventions delivered via email or the Web, yet few Web-based studies exist in this population. Objective: The aim of this study was to examine the feasibility and preliminary results of an email-delivered diet and activity intervention program, ?A Lifestyle Intervention Via Email (ALIVE),? delivered to a sample of racial and ethnic minority breast cancer survivors. Methods: Survivors (mean age: 52 years, 83% [59/71] African American) were recruited and randomized to receive either the ALIVE program?s 3-month physical activity track or its 3-month dietary track. The fully automated system provided tools for self-monitoring and goal setting, tailored content, and automated phone calls. Descriptive statistics and mixed-effects models were computed to examine the outcomes of the study. Results: Upon completion, 44 of 71 survivors completed the study. Our ?intention-to-treat? analysis revealed that participants in the physical activity track made greater improvements in moderate to vigorous activity than those in the dietary track (+97 vs. +49 min/week, P<.001). Similarly, reductions in total sedentary time among those in the physical activity track (?304 vs. ?59 min/week, P<.001) was nearly 5 times greater than that for participants in the dietary track. Our completers case analysis indicated that participants in the dietary track made improvements in the intake of fiber (+4.4 g/day), fruits and vegetables (+1.0 cup equivalents/day), and reductions in saturated fat (?2.3 g/day) and trans fat (?0.3 g/day) (all P<.05). However, these improvements in dietary intake were not significantly different from the changes observed by participants in the physical activity track (all P>.05). Process evaluation data indicated that most survivors would recommend ALIVE to other cancer survivors (97%), were satisfied with ALIVE (82%), and felt that ALIVE was effective (73%). However, survivors expressed concerns about the functionality of the interactive emails. Conclusions: ALIVE appears to be feasible for racial and ethnic minority cancer survivors and showed promising results for larger implementation. Although survivors favored the educational content, a mobile phone app and interactive emails that work on multiple email domains may help to boost adherence rates and to improve satisfaction with the Web-based platform. Trial Registration: ClinicalTrials.gov NCT02722850; https://clinicaltrials.gov/ct2/show/NCT02722850 (Archived by WebCite at http://www.webcitation.org/6tHN9VsPh) UR - http://cancer.jmir.org/2017/2/e13/ DO - 10.2196/cancer.7495 UR - http://www.ncbi.nlm.nih.gov/pubmed/28935620 ID - info:doi/10.2196/cancer.7495 ER - TY - JOUR AU - Wallwiener, Markus AU - Matthies, Lina AU - Simoes, Elisabeth AU - Keilmann, Lucia AU - Hartkopf, D. Andreas AU - Sokolov, N. Alexander AU - Walter, B. Christina AU - Sickenberger, Nina AU - Wallwiener, Stephanie AU - Feisst, Manuel AU - Gass, Paul AU - Fasching, A. Peter AU - Lux, P. Michael AU - Wallwiener, Diethelm AU - Taran, Florin-Andrei AU - Rom, Joachim AU - Schneeweiss, Andreas AU - Graf, Joachim AU - Brucker, Y. Sara PY - DA - 2017/09/14 TI - Reliability of an e-PRO Tool of EORTC QLQ-C30 for Measurement of Health-Related Quality of Life in Patients With Breast Cancer: Prospective Randomized Trial JO - J Med Internet Res SP - e322 VL - 19 IS - 9 KW - breast cancer KW - patient-reported outcomes KW - HRQoL KW - EORTC QLQ-C30 KW - reliability AB - Background: Breast cancer represents the most common malignant disease in women worldwide. As currently systematic palliative treatment only has a limited effect on survival rates, the concept of health-related quality of life (HRQoL) is gaining more and more importance in the therapy setting of metastatic breast cancer. One of the major patient-reported outcomes (PROs) for measuring HRQoL in patients with breast cancer is provided by the European Organization for Research and Treatment of Cancer (EORTC). Currently, paper-based surveys still predominate, as only a few reliable and validated electronic-based questionnaires are available. Facing the possibilities associated with evolving digitalization in medicine, validation of electronic versions of well-established PRO is essential in order to contribute to comprehensive and holistic oncological care and to ensure high quality in cancer research. Objective: The aim of this study was to analyze the reliability of a tablet-based measuring application for EORTC QLQ-C30 in German language in patients with adjuvant and (curative) metastatic breast cancer. Methods: Paper- and tablet-based questionnaires were completed by a total of 106 female patients with adjuvant and metastatic breast cancer recruited as part of the e-PROCOM study. All patients were required to complete the electronic- (e-PRO) and paper-based versions of the HRQoL EORTC QLQ-C30 questionnaire. A frequency analysis was performed to determine descriptive sociodemographic characteristics. Both dimensions of reliability (parallel forms reliability [Wilcoxon test] and test of internal consistency [Spearman rho and agreement rates for single items, Pearson correlation and Kendall tau for each scale]) were analyzed. Results: High correlations were shown for both dimensions of reliability (parallel forms reliability and internal consistency) in the patient?s response behavior between paper- and electronic-based questionnaires. Regarding the test of parallel forms reliability, no significant differences were found in 27 of 30 single items and in 14 of 15 scales, whereas a statistically significant correlation in the test of consistency was found in all 30 single items and all 15 scales. Conclusions: The evaluated e-PRO version of the EORTC QLQ-C30 is reliable for patients with both adjuvant and metastatic breast cancer, showing a high correlation in almost all questions (and in many scales). Thus, we conclude that the validated paper-based PRO assessment and the e-PRO tool are equally valid. However, the reliability should also be analyzed in other prospective trials to ensure that usability is reliable in all patient groups. Trial Registration: ClinicalTrials.gov NCT03132506; https://clinicaltrials.gov/ct2/show/NCT03132506 (Archived by WebCite at http://www.webcitation.org/6tRcgQuou). UR - http://www.jmir.org/2017/9/e322/ DO - 10.2196/jmir.8210 UR - http://www.ncbi.nlm.nih.gov/pubmed/28912116 ID - info:doi/10.2196/jmir.8210 ER -