JMIR Publications

JMIR Cancer

Patient-Centered Innovations, Education and Technology for Cancer Care and Cancer Research


Journal Description

JMIR Cancer (JC) is a new peer-reviewed journal with a focus on education, innovation and technology in cancer care and cancer research, as well as in participatory and patient-centred approaches. A sister journal of the Journal of Medical Internet Research (JMIR), the leading eHealth journal with an impact factor of 4.7, the scope of JC is broader and includes non-Internet approaches to improve cancer care and cancer research.

We invite submission of original research, viewpoints, reviews, tutorials, case studies, and non-conventional articles (e.g. open patient education material and software resources that are not yet evaluated but free for others to use/implement). 

In our "Patients' Corner", we invite patients and survivors to submit short essays and viewpoints on all aspects of cancer, but in particular suggestions on how to improve the health care system, and suggestions for new technologies, applications and approaches (no article processing fees).

Articles published in JC will be submitted to PubMed and Pubmed Central. JC is open access and there are no publication costs for the first issues.


Recent Articles:

  • DCOG LATER (Copyright DCOG LATER study group).

    Effect of Web-Based Versus Paper-Based Questionnaires and Follow-Up Strategies on Participation Rates of Dutch Childhood Cancer Survivors: A Randomized...


    Background: Questionnaires are widely used in survey research, especially in cohort studies. However, participation in questionnaire studies has been declining over the past decades. Because high participation rates are needed to limit the risk of selection bias and produce valid results, it is important to investigate invitation strategies which may improve participation. Objectives: The purpose of this study is to investigate the effect of Web-based versus paper-based questionnaires on participation rates in a questionnaire survey on late effects among childhood cancer survivors (CCSs). Methods: A total of 750 CCSs were randomized across 3 study arms. The initial invitation in study arms 1 and 2 consisted of a Web-based questionnaire only, whereas in study arm 3 this invitation was complemented with a paper-based version of the questionnaire. The first postal reminder, sent to the nonresponding CCSs in all 3 study arms, consisted of either a reminder letter only (study arms 1 and 3) or a reminder letter complemented with a paper-based questionnaire (study arm 2). The second postal reminder was restricted to CCSs in study arms 1 and 2, with only those in study arm 1 also receiving a paper-based questionnaire. CCSs in study arm 3 received a second reminder by telephone instead of by mail. In contrast to CCSs in study arm 3, CCSs in study arms 1 and 2 received a third reminder, this time by telephone. Results: Overall, 58.1% (436/750) of the CCSs participated in the survey. Participation rates were equal in all 3 study arms with 57.4% (143/249) in arm 1, 60.6% (152/251) in arm 2, and 56.4% (141/250) in arm 3 (P=.09). Participation rates of CCSs who received an initial invitation for the Web-based questionnaire only and CCSs who received an invitation to complete either a paper-based or Web-based questionnaire did not differ (P=.55). After the first postal reminder, participation rates of CCSs invited for the Web-based questionnaire only also did not differ compared with CCSs invited for both the Web-based and paper-based questionnaires (P=.48). In general, CCSs preferred the paper-based over the Web-based questionnaire, and those completing the paper-based questionnaire were more often unemployed (P=.004) and lower educated (P<.001). Conclusion: Invitation strategies offering a Web-based questionnaire without a paper-based alternative at first invitation can be used without compromising participation rates of CCS. Offering the choice between paper- and Web-based questionnaires seems to result in the highest accrual participation rate. Future research should look into the quality of the data delivered by both questionnaires filled in by respondents themselves. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN): 84711754; (Archived by WebCite at

  • Collage of screenshots from the Active Nova Scotia PA program (Image created by authors who hold the copyright).
Source URL:

    Feasibility and Preliminary Efficacy of an Online Intervention to Increase Physical Activity in Nova Scotian Cancer Survivors: A Randomized Controlled Trial


    Background: Physical activity (PA) behavior change interventions among cancer survivors have used face-to-face, telephone, email, and print-based methods. However, computer-tailored, Internet-delivered programs may be a more viable option to achieve PA behavior change. Objective: The objective of this study is to test the feasibility and preliminary efficacy of a Web-based PA behavior change program among cancer survivors. Methods: Nova Scotian cancer survivors (N=415) who previously expressed interest in a research study were approached. Interested participants were asked to complete an online assessment of PA and quality of life (QOL) before being randomized to either a theory-based PA behavior change program using the PA tracking website UWALK (UCAN; n=48) or usual care (UC; n=47). After the intervention (9 weeks), participants completed another online assessment of PA and QOL as well as measures to evaluate the program and website. Descriptive analyses from surveys and Web analytic software were used to assess feasibility and mean change scores were used to test efficacy. Results: Of all contacted survivors, 95 (22.3%, 95/415) completed baseline measures and were randomized with 84 (88%, 84/95) completing the 9-week assessment. The behavior change program and website were rated highly on the satisfaction items. Average logins were 10.3 (1.1 per week) and 26.0% (111/432) of the weekly modules were completed. Most participants (71%, 29/41) indicated they were more aware of their daily PA levels and 68% (28/41) found the site easily navigable. Adjusted group differences in total exercise minutes favored the UCAN group by an increase of 42 minutes (95% CI -65 to 150; P=.44, d=0.17). Results were more pronounced, though still nonsignificant, among those not meeting guidelines at baseline where UCAN increased PA by 52 minutes compared to a decrease of 15 minutes in UC (adjusted between group difference=75, 95% CI -95 to 244; P=.38, d=0.27). Conclusions: We found that Internet-delivery may be a feasible alternative to more costly methods to promote PA among Nova Scotian cancer survivors. Moreover, there was a trend toward increased PA among those in the UCAN group, especially among those who were not meeting PA guidelines at baseline. Future research should focus on recruiting inactive cancer survivors and engaging them in the website to determine the optimal potential of Web-based interventions for promoting PA in cancer survivors.

  • (cc) Fissler et al. CC-BY-SA 2.0, please cite as (

    The Impact of Advice Seekers’ Need Salience and Doctors’ Communication Style on Attitude and Decision Making: A Web-Based Mammography Consultation Role Play


    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, η2=.073) and decision making (F1,92=4.43, P=.038, η2=.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.

  • Introduction to the program showed the range of ethnicities and races.

    Response Across the Health-Literacy Spectrum of Kidney Transplant Recipients to a Sun-Protection Education Program Delivered on Tablet Computers: Randomized...


    Background: Sun protection can reduce skin cancer development in kidney transplant recipients, who have a greater risk of developing squamous cell carcinoma than the general population. Objective: A culturally sensitive sun-protection program (SunProtect) was created in English and Spanish with the option of choosing audio narration provided by the tablet computer (Samsung Galaxy Tab 2 10.1). The intervention, which showed skin cancer on patients with various skin tones, explained the following scenarios: skin cancer risk, the ability of sun protection to reduce this risk, as well as offered sun-protection choices. The length of the intervention was limited to the time usually spent waiting during a visit to the nephrologist. Methods: The development of this culturally sensitive, electronic, interactive sun-protection educational program, SunProtect, was guided by the “transtheoretical model,” which focuses on decision making influenced by perceptions of personal risk or vulnerability to a health threat, importance (severity) of the disease, and benefit of sun-protection behavior. Transportation theory, which holds that narratives can have uniquely persuasive effects in overcoming preconceived beliefs and cognitive biases because people transported into a narrative world will alter their beliefs based on information, claims, or events depicted, guided the use of testimonials. Participant tablet use was self-directed. Self-reported responses to surveys were entered into the database through the tablet. Usability was tested through interviews. A randomized controlled pilot trial with 170 kidney transplant recipients was conducted, where the educational program (SunProtect) was delivered through a touch-screen tablet to 84 participants. Results: The study involved 62 non-Hispanic white, 60 non-Hispanic black, and 48 Hispanic/Latino kidney transplant recipients. The demographic survey data showed no significant mean differences between the intervention and control groups in age, sex, income, or time since transplantation. The mean duration of program use varied by the ethnic/racial group, with non-Hispanic whites having the shortest use (23 minutes) and Hispanic/Latinos having the longest use (42 minutes). Knowledge, awareness of skin cancer risk, willingness to change sun protection, and use of sun protection increased from baseline to 2 weeks after the program in participants from all ethnic/racial groups in comparison with controls (P<.05). Kidney transplant recipients with inadequate (47/170, 28%) and marginal functional health literacy (59/170, 35%) listened to either Spanish or English audio narration accompanying the text and graphics. After completion of the program, Hispanic/Latino patients with initially inadequate health literacy increased their knowledge more than non-Hispanic white and black patients with adequate health literacy (P<.05). Sun protection implemented 2 weeks after education varied by the ethnic/racial group. Outdoor activities were reduced by Hispanics/Latinos, non-Hispanic blacks sought shade, Hispanic/Latinos and non-Hispanic blacks wore clothing, and non-Hispanic whites wore sunscreen (P<.05). Conclusion: Educational program with a tablet computer during the kidney transplant recipients’ 6- or 12-month follow-up visits to the transplant nephrologist improved sun protection in all racial/ethnic groups. Tablets may be used to provide patient education and reduce the physician’s burden of educating and training patients. Trial Registration: NCT01646099;

  • Survivors Involving Supporter to Take Action in Advancing Health (SISTAAH) Talk. The image was developed by Georgia Regents University for a mobile app for an intervention under development and based on the needs assessment being published by JMIR.

    Lifestyle Modification Experiences of African American Breast Cancer Survivors: A Needs Assessment


    Background: Little is known about the rates of obesity among African American (AA) breast cancer survivors (BCSs), the availability and use of lifestyle modification methods suitable for this population, and the impact of changes in dietary intake and physical activity on health-related quality of life (HR-QoL). Objective: The objectives of the study were to describe obesity rates, dietary intake, and physical activity as lifestyle modification strategies; examine predictors of engagement in these strategies post diagnosis; and learn more about salient features of lifestyle interventions from AA BCSs participating in a breast cancer support group. Methods: The needs assessment included four components: (1) a literature review to determine existing lifestyle modification strategies of AA BCSs; (2) secondary data analysis of the 2010 National Health Interview Survey, Cancer Control Supplement to examine HR-QoL; (3) administration, to 200 AA BCSs, of an assessment tool relating to weight and breast cancer history, dietary intake, and physical activity through a variety of approaches (eg, Internet, mail, in-person, and telephone); and (4) focus group discussions to frame lifestyle interventions. Results: Preliminary findings indicate that AA BCSs are underrepresented in lifestyle intervention research, have disparities in HR-QoL outcomes, do not meet current cancer prevention guidelines, and have recommendations for effective strategies for lifestyle modification. Conclusions: As analyses of the needs assessment are completed, the research team is partnering with community coalitions and breast cancer support groups in Miami, Chicago, Houston, Los Angeles, and Philadelphia to develop community-engaged intervention approaches for promoting adherence to cancer prevention guidelines.

  • Screenshot of iCanFit.

    Efficacy of a Mobile-Enabled Web App (iCanFit) in Promoting Physical Activity Among Older Cancer Survivors: A Pilot Study


    Background: The benefits of physical activity for cancer survivors are well documented. However, few older cancer survivors are engaged in regular physical activity. Mobile technologies may be an effective method to deliver physical activity promotion programs for older cancer survivors. iCanFit, a mobile-enabled Web-based app, was developed based on formative research and usability testing. This app includes interactive features of physical activity, goal setting and tracking, and receiving personalized visual feedback. Objective: The aim of this study is to pilot test the initial efficacy of iCanFit. Methods: Older cancer survivors (N=30) were recruited online through our collaborative partnership with a cancer survivor's organization. After the participants completed an online baseline survey, they were asked to use the iCanFit website. Instructional videos on how to use the web app were available on the website. Participants were asked to complete a follow-up survey 2-3 months later. Participants’ physical activity, quality of life, and their experience with iCanFit were measured. Results: A total of 30 participants completed the baseline survey, and 26 of them (87%, 26/30) also completed a follow-up survey 2-3 months later. The median age of participants was 69 years (range 60-78). Participants’ quality of life and engagement in regular physical activity improved significantly after the use of iCanFit. Participants indicated a general affinity towards the key function “Goals” in iCanFit, which motivated continued activity. They also provided suggestions to further improve the app (eg, adding a reminder functionality, easier or alternative ways of entering activities). Conclusion: The interactive Web-based app iCanFit has demonstrated initial efficacy. Even though our study was limited by a small sample size, convenience sampling, and a short follow-up period, results suggest that using mobile tools to promote physical activity and healthy living among older cancer survivors holds promise. Next steps include refining iCanFit based on users’ feedback and developing versatile functionality to allow easier physical activity goal setting and tracking. We also call for more studies on developing and evaluating mobile and web apps for older cancer survivors.

  • Office work on a PC and tablet - combo
© astrosystem / Fotolia.

    Age-Related Use and Perceptions of eHealth in Men With Prostate Cancer: A Web-Based Survey


    Background: Men with prostate cancer require ample information and support along the continuum of care, and eHealth is one way to meet such critical information and support needs. Currently, evidence about how age influences use and perceptions about prostate cancer eHealth information and support is lacking. Objective: The aim of this paper is to explore use and perceptions about eHealth among men living with prostate cancer. Specifically, we aimed to analyze men with prostate cancer by age-specific cohorts to identify potential age-related differences in use and perceptions about prostate cancer eHealth information. Methods: We used survey methodology to examine how men under 65 years old with prostate cancer differ from those aged 65 years old or older in use and perceptions about prostate cancer eHealth information and support (n=289). Results: We found that men in the younger cohort used the Internet more often to be informed about treatment options (P=.04) and to learn more about staging/grading (P=.01) than men in the older cohort. Results also showed comparatively greater use of online prostate cancer information for emotional support and encouragement by the younger as compared to the older cohort (P=.001). Furthermore, the older cohort reported more negative psychosocial effects of eHealth (eg, more anxious, depressed) than younger men (P=.002). We also found that as a result of more frequent Internet use, younger men experienced more positive psychosocial effects (eg, more informed, in control) from accessing information about prostate cancer through eHealth channels (b=-0.10, 95% CI -0.28 to 0). Conclusions: Men with prostate cancer have different information and support needs; our findings suggest that these needs might vary by age. Future research is needed to unravel age-related factors underlying these differences to be better able to tailor prostate cancer eHealth information to men’s information and support needs.

  • Lung cancer xray. Image Source: James Heilman MD, licensed under the Creative Commons Attribution-Share Alike 3.0 Unported

    Blog Posting After Lung Cancer Notification: Content Analysis of Blogs Written by Patients or Their Families


    Background: The advent and spread of the Internet has changed the way societies communicate. A portion of information on the Internet may constitute an important source of information concerning the experiences and thoughts of patients and their families. Patients and their families use blogs to obtain updated information, search for alternative treatments, facilitate communication with other patients, and receive emotional support. However, much of this information has yet to be actively utilized by health care professionals. Objective: We analyzed health-related information in blogs from Japan, focusing on the feelings and satisfaction levels of lung cancer patients or their family members after being notified of their disease. Methods: We collected 100 blogs written in Japanese by patients (or their families) who had been diagnosed with lung cancer by a physician. These 100 blogs posts were searchable between June 1 and June 30, 2013. We focused on blog posts that addressed the lung cancer notification event. We analyzed the data using two different approaches (Analysis A and Analysis B). Analysis A was blog content analysis in which we analyzed the content addressing the disease notification event in each blog. Analysis B was patient's dissatisfaction and anxiety analysis. Detailed blog content regarding patient's dissatisfaction and anxiety at the individual sentence level was coded and analyzed. Results: The 100 blog posts were written by 48 men, 46 women, and 6 persons whose sex was undisclosed. The average age of the blog authors was 52.4 years. With regard to cancer staging, there were 5 patients at Stage I, 3 patients at Stage II, 14 patients at Stage III, 21 patients at Stage IV, and 57 patients without a disclosed cancer stage. The results of Analysis A showed that the proportion of patients who were dissatisfied with the level of health care exceeded that of satisfied patients (22% vs 8%). From the 2499 sentences in the 100 blog posts analyzed, we identified expressions of dissatisfaction and anxiety in 495 sentences. Our results showed that there were substantially more posts concerning “Way of living, reasons for living, set of values” and “Relationships with medical staff (own hospital)” than in previous studies (Analysis B). Conclusions: This study provides insight into the feelings of dissatisfaction and anxieties held by lung cancer patients and their families, including those regarding the “Way of living, reasons for living, set of values” and “Relationship with medical staff (own hospital),” which were inaccessible in previous survey analyses. When comparing information obtained from patients’ voluntary records and those from previous surveys conducted by health care institutions, it is likely that the former would be more indicative of patients’ actual opinions and feelings. Therefore, it is important to utilize such records as an information resource.

  • Couplelinks Home Page.

    Defining the Role of the Online Therapeutic Facilitator: Principles and Guidelines Developed for Couplelinks, an Online Support Program for Couples Affected...


    Development of psychological interventions delivered via the Internet is a rapidly growing field with the potential to make vital services more accessible. However, there is a corresponding need for careful examination of factors that contribute to effectiveness of Internet-delivered interventions, especially given the observed high dropout rates relative to traditional in-person (IP) interventions. Research has found that the involvement of an online therapist in a Web-based intervention reduces treatment dropout. However, the role of such online therapists is seldom well articulated and varies considerably across programs making it difficult to discern processes that are important for online therapist involvement.In this paper, we introduce the concept of “therapeutic facilitation” to describe the role of the online therapist that was developed and further refined in the context of a Web-based, asynchronous psychosocial intervention for couples affected by breast cancer called Couplelinks. Couplelinks is structured into 6 dyadic learning modules designed to be completed on a weekly basis in consultation with a facilitator through regular, asynchronous, online text-based communication.Principles of therapeutic facilitation derived from a combination of theory underlying the intervention and pilot-testing of the first iteration of the program are described. Case examples to illustrate these principles as well as commonly encountered challenges to online facilitation are presented. Guidelines and principles for therapeutic facilitation hold relevance for professionally delivered online programs more broadly, beyond interventions for couples and cancer.

  • Diagram of cervical lymph node chains - SmartDraw image.

    Evaluation of a Web-Based App Demonstrating an Exclusionary Algorithmic Approach to TNM Cancer Staging

    Authors List:


    Background: TNM staging plays a critical role in the evaluation and management of a range of different types of cancers. The conventional combinatorial approach to the determination of an anatomic stage relies on the identification of distinct tumor (T), node (N), and metastasis (M) classifications to generate a TNM grouping. This process is inherently inefficient due to the need for scrupulous review of the criteria specified for each classification to ensure accurate assignment. An exclusionary approach to TNM staging based on sequential constraint of options may serve to minimize the number of classifications that need to be reviewed to accurately determine an anatomic stage. Objective: Our aim was to evaluate the usability and utility of a Web-based app configured to demonstrate an exclusionary approach to TNM staging. Methods: Internal medicine residents, surgery residents, and oncology fellows engaged in clinical training were asked to evaluate a Web-based app developed as an instructional aid incorporating (1) an exclusionary algorithm that polls tabulated classifications and sorts them into ranked order based on frequency counts, (2) reconfiguration of classification criteria to generate disambiguated yes/no questions that function as selection and exclusion prompts, and (3) a selectable grid of TNM groupings that provides dynamic graphic demonstration of the effects of sequentially selecting or excluding specific classifications. Subjects were asked to evaluate the performance of this app after completing exercises simulating the staging of different types of cancers encountered during training. Results: Survey responses indicated high levels of agreement with statements supporting the usability and utility of this app. Subjects reported that its user interface provided a clear display with intuitive controls and that the exclusionary approach to TNM staging it demonstrated represented an efficient process of assignment that helped to clarify distinctions between tumor, node, and metastasis classifications. High overall usefulness ratings were bolstered by supplementary comments suggesting that this app might be readily adopted for use in clinical practice. Conclusions: A Web-based app that utilizes an exclusionary algorithm to prompt the assignment of tumor, node, and metastasis classifications may serve as an effective instructional aid demonstrating an efficient and informative approach to TNM staging.

  • NHS screenshot.

    Availability of Information About Lifestyle for Cancer Survivors in England: A Review of Statutory and Charitable Sector Organizations and Cancer Centers


    Background: Health behavior change following a cancer diagnosis has the potential to improve long-term outcomes. However, many patients do not receive professional advice about lifestyle and are therefore increasingly using the Internet to seek further information. The statutory and charitable sectors and cancer centers all play an important role in the provision of information and have been found to be favored by cancer survivors searching for information. However, to date there has been no systematic evaluation of the lifestyle information available online for cancer survivors. Objective: The purpose of this review was to identify the lifestyle information provided for cancer survivors by statutory and charitable sector organizations and cancer centers in the United Kingdom. We aimed to identify information on tobacco, physical activity, diet, weight, and alcohol designed for people who have been diagnosed with breast, prostate, or colorectal cancer. Methods: The National Health Service (NHS) website was the focus of the search for information provided by the statutory sector. Cancer centers were identified from the Organization of European Cancer Institutes and an Internet search, and charitable sector organizations were identified by searching the Charity Commission database. The three largest generic, breast, prostate, and colorectal cancer charitable organizations were included. A systematic search of the organizations was conducted to identify lifestyle information for cancer survivors. Results: Ten organizations had some lifestyle information for cancer survivors on their websites. The Christie NHS Foundation Trust, Macmillan Cancer Support, and Prostate Cancer UK had the most comprehensive guides, covering physical activity, diet, weight management, smoking, and alcohol. The NHS website did not provide any information but had a link to Cancer Research UK’s information about diet. Eight organizations suggested talking to a health professional before making any changes. Conclusions: The majority of organizations included in this review would benefit from updating their websites to include adequate information and advice about lifestyle for cancer survivors, or they risk cancer survivors turning to less reliable sources of information. Health professionals should be appropriately trained to deal with questions about lifestyle and to advise cancer survivors about lifestyle changes following their diagnosis.

  • Screenshot of info for the black salve.

    YouTube Videos Related to Skin Cancer: A Missed Opportunity for Cancer Prevention and Control


    Background: Early detection and treatment influence the mortality risk of skin cancer. Objective: The objective of this study was to analyze the content of the most viewed professional and consumer videos uploaded to YouTube related to skin cancer. Methods: A total of 140 professional and consumer videos uploaded between 2007 and 2014 were identified and coded. Coding involved identifying and sorting followed by gathering descriptive information, including length of the video, number of views, and year uploaded. A dichotomous coding scheme (ie, yes or no) was used in coding specific aspects of video content, including provision of information, type of skin cancer, age group, family history, risk reduction, risk factors, fear, and home remedies for skin cancer treatment. Results: The majority of videos provided information related to screening. Many consumer videos conveyed information related to the use of a black salve as a home remedy for skin cancer, despite the fact that there is no evidence that it is an effective treatment. Conclusions: Research is needed to identify characteristics of videos that are most likely to be viewed to inform the development of credible communications.

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  • Like or Dislike? Impact of Facebook on Ewing sarcoma treatment.

    Date Submitted: Nov 23, 2015

    Open Peer Review Period: Nov 24, 2015 - Jan 19, 2016

    Background: An increasing number of patients are raising their voice in online forums via social media platforms to exchange health related information. With more than 1 billion international users da...

    Background: An increasing number of patients are raising their voice in online forums via social media platforms to exchange health related information. With more than 1 billion international users daily in summer 2015, Facebook is the leading social media platform including medical related issues. Ewing sarcoma mainly affects teenagers and young adults. A large part of this age group uses Facebook. However, little is known about the impact of this modern way of communication via online platforms on Ewing sarcoma patients and their socioenviroment. Objective: The aim of this study was to analyze Ewing sarcoma patients’ and relatives’ behavior on Facebook to draw conclusions regarding the impact of Facebook on Ewing sarcoma treatment. Methods: We examined a Facebook group named “Ewing Sarcoma Awareness” that is used to exchange information for both, patients and relatives regarding Ewing sarcoma. A self-designed questionnaire was used to compare patients’ and relatives’ answers. Additionally we analyzed all processes (posts, likes, threads, links) in the group during 6 consecutive months. Sixty-five members of the Facebook group (26 patients, 39 relatives) out of 2227 international group members participated in our study. Results: More than 70% of all participants reported that they use the group “Ewing Sarcoma Awareness” as a source of information about Ewing sarcoma. Eighty-nine percent agreed a little or a lot, that being in contact with other people affected via the group makes it easier to handle the diagnosis. Twenty percent of all participants reported that the group affected their choice of treatment and in 15% participants were influenced in the selection of their specialist. Only regarding the recommendation of the Facebook-group towards other people affected a significant difference was found comparing patients’ and relatives’ results. During the last 6 months most activities in the group concerned sharing destiny and handling the diagnosis. Fundraising played a minor role. Conclusions: The Facebook group “Ewing Sarcoma Awareness” has a relevant impact for group members regarding their choice of treatment. Moreover, participants turn towards the group to receive mental support in everyday life. Statements made in the group are in part questionable from a medical point of view and its impact on patients’ care needs further evaluation. Clinical Trial: none