JMIR Publications

JMIR Cancer

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

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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), a leading eHealth journal (Impact Factor 2014: 3.4), 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 all articles are published under a Creative Commons Attribution license.

 

Recent Articles:

  • Image Source: cancer-390322_1920.jpg, courtesy of Pixabay, [Public Domain, https://creativecommons.org/publicdomain/zero/1.0/deed.en
 ], via https://pixabay.com/en/cancer-newspaper-word-magnifier-390322/.

    Predictors of Online Cancer Prevention Information Seeking Among Patients and Caregivers Across the Digital Divide: A Cross-Sectional, Correlational Study

    Authors List:

    Abstract:

    Background: The digital divide is a recognized public health problem caused by social determinants that exacerbate health disparities. Despite the “tectonic shift” in how most of the public obtains cancer information, underserved communities are at increased risk of being digitally marginalized. However, research that examines factors underlying eHealth information seeking in diverse health contexts is lacking. Objective: The aim of this paper is to explore preferences and use of eHealth cancer prevention information (CPI) among patients and caregivers attending a minority-serving oncology clinic using the comprehensive model of information seeking as a theoretical framework. Specifically, the study examined the role of social determinants and prevention orientation in differences in preference and use of the Internet for CPI seeking among this diverse sample. Methods: Survey methodology was used to identify social determinants and behavioral factors, including prevention orientation as correlates and predictors of respondents’ (n=252) preferences and use of eHealth for CPI seeking. Results: Less than half (112/252, 44.4%) of respondents said that if faced with the need to seek CPI, they would seek this information online. In the final logistic regression model, education, ethnicity, age, and prevention orientation made significant contributions to the model (P<.05). Specifically, for each year increase in age, participants were 3% less likely to use the Internet for CPI seeking (P=.011). Compared to college graduates, respondents who did not complete high school were 11.75 times less likely to cite the Internet as a CPI carrier (P<.001) and those with a high school education were 3 times (2.99, P=.015) less likely. In addition, the odds that a Spanish speaker would cite the Internet as a CPI carrier were one-fifth (22%) of non-Hispanic whites (P=.032) and about one-quarter (26%) of English-speaking Latinos (P=.036). Finally, with each one point increase on the prevention orientation scale, respondents were 1.83 times less likely to cite online CPI seeking (P=.05). Conclusions: Social determinants to health have profound influence on eHealth CPI seeking. Providers and policy makers should focus on meeting patients and family members’ CPI needs following diagnosis and increase eHealth accessibility and availability of evidence-based CPI to diverse populations. Future research is needed to unravel further differences in eHealth CPI seeking, including those among Native Americans that emerged as an additional digitally underserved racial/ethnic group. Finally, additional factors underlying these differences should be explored to better tailor CPI eHealth information to diverse communities’ information needs.

  • Image courtesy of Witthaya Phonsawat at FreeDigitalPhotos.net. Published on 11 April 2015 Stock photo - Image ID: 100320775;  http://www.freedigitalphotos.net/images/happy-asian-senior-man-using-the-mobile-phone-in-home-photo-p320775.

    Interest in Health Behavior Intervention Delivery Modalities Among Cancer Survivors: A Cross-Sectional Study

    Abstract:

    Background: Effective, broad-reaching channels are important for the delivery of health behavior interventions in order to meet the needs of the growing population of cancer survivors in the United States. New technology presents opportunities to increase the reach of health behavior change interventions and therefore their overall impact. However, evidence suggests that older adults may be slower in their adoption of these technologies than the general population. Survivors’ interest for more traditional channels of delivery (eg, clinic) versus new technology-based channels (eg, smartphones) may depend on a variety of factors, including demographics, current health status, and the behavior requiring intervention. Objective: The aim of this study was to determine the factors that predict cancer survivors’ interest in new technology-based health behavior intervention modalities versus traditional modalities. Methods: Surveys were mailed to 1871 survivors of breast, prostate, and colorectal cancer. Participants’ demographics, diet and physical activity behaviors, interest in health behavior interventions, and interest in intervention delivery modalities were collected. Using path analysis, we explored the relationship between four intervention modality variables (ie, clinic, telephone, computer, and smartphone) and potential predictors of modality interest. Results: In total, 1053 respondents to the survey (56.3% response rate); 847 provided complete data for this analysis. Delivery channel interest was highest for computer-based interventions (236/847, 27.9% very/extremely interested) and lowest for smartphone–based interventions (73/847, 8.6%), with interest in clinic-based (147/847, 17.3%) and telephone-delivered (143/847, 16.9%) falling in between. Use of other technology platforms, such as Web cameras and social networking sites, was positively predictive of interest in technology-based delivery channels. Older survivors were less likely to report interest in smartphone–based diet interventions. Physical activity, fruit and vegetable consumption, weight status, and age moderated relationships between interest in targeted intervention behavior and modality. Conclusions: This study identified several predictors of survivor interest in various health behavior intervention delivery modalities. Overall, computer-based interventions were found to be most acceptable, while smartphones were the least. Factors related to survivors’ current technology use and health status play a role in their interest for technology-based intervention versus more traditional delivery channels. Future health behavior change research in this population should consider participants’ demographic, clinical, and lifestyle characteristics when selecting a delivery channel. Furthermore, current health behavior interventions for older cancer survivors may be best delivered over the Internet. Smartphone interventions may be feasible in the future following further adoption and familiarization by this particular population.

  • Mock-up of a personal home page (after participants have logged in).

    Needs and Preferences of Partners of Cancer Patients Regarding a Web-Based Psychological Intervention: A Qualitative Study

    Abstract:

    Background: Evidence-based, easily accessible, supportive interventions for partners of cancer patients are limited, despite the fact that they often suffer from diminished emotional, social, physical, and relational functioning. To develop a new intervention that will fit their demands, it is important to consult potential users. Objective: To examine partners’ interest in a Web-based psychological intervention and to identify their needs and wishes regarding such an intervention. Methods: Semistructured interviews were conducted with 16 partners of cancer patients, who varied in terms of age, gender, education, employment, type, and stage of disease. Partners were asked (1) whether they would use a psychological Web-based intervention and which preconditions (maximum time, structure, participate alone or with their partner) it should meet; (2) which functionalities (information, peer support, online psychological counseling) the intervention should contain; and (3) which topics (eg, taking care of oneself) should be addressed. Data were coded by 2 coders independently. Results: The need for a Web-based intervention varied. Arguments for being interested in a Web-based intervention included the need for acknowledgement; the need for someone they could talk to; and the need for information, tips, and support. Based on their experiences as a partner of a cancer patient, participants would prefer an intervention that is not too time-consuming (about 1-2 hours a week) and which is based on a “step-by-step” approach, meaning that the content of the intervention should match the stage of their partner’s disease. Also, they would prefer a positive approach, which means that the intervention should be a source of hope and energy. Most participants stated that they would prefer to participate without their ill spouse, because they do not want to burden their partners with their own problems. An intervention should contain information and optional peer support. Participants’ opinions about online psychological counseling in the intervention were divided. Arguments for online psychological counseling were that a professional could check on them and they were able to ask questions. Arguments against online counseling were that partners were not in need for guidance or they had enough support from usual care. Topics with the highest priority were “coping with feelings and emotions,” “should I or shouldn’t I spare my partner?,” “communicating with each other,” “asking for help and refusing help,” and “moving on with life after cancer treatment.” Furthermore, participants suggested additional topics of “dare to enjoy” and “acceptance of the patient’s disease.” Conclusions: A Web-based intervention can be a valuable addition to existing support initiatives for partners of cancer patients. This study provides important information about the content and form of such an intervention. Flexibility and a positive approach seem to be the most important features.

  • 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...

    Abstract:

    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; http://www.controlled-trials.com/ISRCTN84711754 (Archived by WebCite at http://www.webcitation.org/6c9ZB8paX)

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

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

    Abstract:

    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 (http://cancer.jmir.org/article/viewFile/4279/1/65915).

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

    Abstract:

    Background: Patients and advice seekers come to a medical consultation with typical needs, and physicians require adequate communication skills in order to address those needs effectively. It is largely unclear, however, to what extent advice seekers’ attitudes toward a medical procedure or their resulting decisions are influenced by a physician’s communication that ignores or explicitly takes these needs into account. Objective: This experimental study tested how advice seekers’ salient needs and doctor’s communication styles influenced advice seekers’ attitudes toward mammography screening and their decision whether or not to participate in this procedure. Methods: One hundred women (age range 20-47 years, mean 25.22, SD 4.71) participated in an interactive role play of an online consultation. During the consultation, a fictitious, program-controlled physician provided information about advantages and disadvantages of mammography screening. The physician either merely communicated factual medical information or made additional comments using a communication style oriented toward advice seekers’ typical needs for clarity and well-being. Orthogonal to this experimental treatment, participants’ personal needs for clarity and for well-being were either made salient before or after the consultation with a needs questionnaire. We also measured all participants’ attitudes toward mammography screening and their hypothetical decisions whether or not to participate before and after the experiment. Results: As assumed, the participants expressed strong needs for clarity (mean 4.57, SD 0.42) and for well-being (mean 4.21, SD 0.54) on 5-point Likert scales. Making these needs salient or not revealed significant interaction effects with the physician’s communication style regarding participants’ attitude change (F1,92=7.23, P=.009, 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...

    Abstract:

    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: ClinicalTrials.gov NCT01646099; https://clinicaltrials.gov/ct2/show/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

    Abstract:

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

  • Screenshot of iCanFit.

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

    Abstract:

    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

    Abstract:

    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 http://commons.wikimedia.org/wiki/File:LungCACXR.PNG.

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

    Abstract:

    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...

    Abstract:

    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.

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  • Mixed Method Evaluation of Adolescent and Young Adult Cancer Survivorship Educational Programming

    Date Submitted: Mar 30, 2016

    Open Peer Review Period: Apr 1, 2016 - May 27, 2016

    Background: This mixed method evaluation considers the need for increased professional and patient education for Adolescent and Young Adult (AYA) cancer survivorship. Due to the high incidence of late...

    Background: This mixed method evaluation considers the need for increased professional and patient education for Adolescent and Young Adult (AYA) cancer survivorship. Due to the high incidence of late effects of cancer treatment among AYA cancer survivors, knowledge sharing and communications are needed throughout the transition from cancer care into community care. AYA survivors are likely to need developmentally appropriate psychosocial care as well as extensive follow-on surveillance by physicians who are educated and aware of the likely chronic conditions and late effects that may occur in these patients. Digital technology including mobile apps, videos, and podcasts are important tools to support both AYA survivor and provider education. Objective: The objective of this mixed methods research was to evaluate the outcomes of the After Cancer Care Ends, Survivorship Starts for Adolescent and Young Adults (ACCESS AYA) programming. The intent of the ACCESS AYA program was to build health literacy around AYA survivorship issues and to stimulate improved communications between survivors and healthcare providers. The paper addresses the central research question of “How did the ACCESS AYA program increase health literacy, communications, and understanding among AYA survivors and providers?” Included in the evaluation were use of an iPhone app “AYA Healthy Survivorship” and a companion website with digital media developed for the project. Methods: This mixed methods evaluation included a brief quantitative survey of participants’ awareness and effectiveness of the ACCESS AYA project combined with in-depth qualitative interviews based on a general interview guide tailored to the different types of evaluation participants. The evaluation used the Atlas Ti™ qualitative database and software for coding and key word analyses. Inter-rater reliability analyses were assessed using Cohen’s Kappa analysis using Stata 12.1 software Results: Using a scale of 1 to 5, with 5 as high, there were 22 respondents who rated their level of awareness of the project with a mean 3.2 (CI 3.02:3.45). Participants rated effectiveness with a mean of 4 (CI 3.72:4.27). In the qualitative evaluation, key coding themes included survivor wellbeing, healthcare professional education, cancer advocates role and education, Seton hospital and community-based resources and the role of societal support. The inter-rater reliability scores (ranging from 1 to minus 1) for the First Cycle coding was .893, and .784 for the Second Cycle. The Cohen kappa scores were derived using Stata 12.1 statistical analysis software. Conclusions: This case study offers a substantive contribution to understanding the AYA survivor community and to the healthcare professionals and advocates who aid them in their efforts to a new “normal” life and wellbeing in their survivorship. The results of the evaluation highlight the need to continue to build both survivor and professional resources to address the unique impact of cancer on AYA cancer survivors.

  • Online social engagement by cancer patients: results of a clinic-based patient survey

    Date Submitted: Mar 22, 2016

    Open Peer Review Period: Mar 23, 2016 - May 18, 2016

    Background: The Internet is commonly used as a source of health information, but little is know about the Internet practices specific to cancer patients. Objective: Our aim was to understand cancer pa...

    Background: The Internet is commonly used as a source of health information, but little is know about the Internet practices specific to cancer patients. Objective: Our aim was to understand cancer patients’ use of the Internet as an informational resource and for social support. Methods: We conducted a survey of 1282 patients at a comprehensive cancer center to assess sociodemographic characteristics, disease status, and Internet access and online behaviors. Results: Of the cancer patients we surveyed, 83% had Internet access; of those with Internet access, 90% reported going online at least weekly, and 70% reported daily online activity. We grouped Internet users (n = 1061) by their level of online social engagement and found that about 30% had not sought out social connections online, 21% had read about experiences from other cancer patients, 38% had also written about their personal experiences, and 12% had participated in a formal online group for cancer patients. Increased online social engagement was associated with an increased perception that the Internet was useful for social support. Conclusions: Internet use among cancer patients is common, and most patients report that they find useful information about their cancer diagnosis online. Cancer patients who actively post or share content perceive more social support from the Internet than those who use the Internet solely as an informational resource or to read about other cancer patients’ experiences.

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