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Adolescents with cancer (AWC) in pediatrics may not have adequate opportunities for peer support. This mixed methods study aimed to characterize peer support needs of AWC during or shortly after treatment. Ten AWC with median age 16.5 (range 14-18) years completed a survey and semistructured interview. Three themes were apparent: cancer journey difficulties, current support system, and peer support perspectives. Participants felt incompletely understood by existing supports, lacked connection with other AWC, and craved experiential information. Peer support interventions should be flexible, facilitate various interactions, and include social media. The next step is to implement and evaluate an intervention.

Cancer patients may turn to social media (SM) to cope with distress. We investigated associations between distress and internet/SM use for cancer information/support. Adult patients at a Canadian cancer centre completed a cross-sectional survey on sociodemographics, health status, use of cancer online resources and distress (EQ5D-5L). Statistical models adjusted for relevant variables. Of 376 participants, median age was 52 years, time since diagnosis was 1.63 years, 272 (74%) had post-secondary education and 192 (51%) were female. For cancer information/support, 276 (73%) used internet and 147 (39%) SM. Dose response relationships were observed between distress and cancer-related internet (p = 0.02), and SM use (p 30 min daily (OR = 3.4; 95% CI: 2.1–5.7), and were distressed (OR = 1.67, 95% CI: 1.0–2.7). SM benefits were to learn about cancer (93; 25%), distract from cancer (85; 23%) and connect with survivors (81; 22%). SM limitations were privacy (161; 43%), quality (90; 24%) and personal applicability (85; 23%). Females used SM more to connect with survivors than males (p = 0.001). Greater internet confidence, higher education and being female were associated with cancer-related internet/SM use. Distressed cancer patients were also more likely to turn to SM. Privacy concerns may limit SM use for coping. Future research should determine how to optimize SM in caring for and connecting with patients and reduce cancer-related distress.

Cancer navigation improves access to support and reduces barriers to care; however, appropriate training of navigators is essential. We developed the TrueNTH Peer Navigation Training Program (PNTP), a competency-based, blended online/in-person course. In this study, we evaluate the feasibility, acceptability, and effectiveness of the PNTP among prostate cancer (PC) survivors (patients, caregivers). We employed an explanatory mixed method study design consisting of course usage data, pre-/post-questionnaires, and focus groups informed by the Kirkpatrick framework and self-efficacy theory. Three cohorts in two Canadian cities (n = 26) received the PNTP. Participants were motivated to support others like themselves (n = 20), fill a gap (n = 7), pay it forward (n = 6), and offer expertise (n = 4). Recruitment, retention, and questionnaire completion were 96.7%, 89.6%, and 92%. Participants contributed a total of 426 posts to the online forums (2 to 3 posts per participant/module). Satisfaction was 9.4/10 (SD = 0.7) and usability was 84.5/100 (SD = 10.1). All learning outcomes increased: understanding of learning objectives t(23) = − 6.12, p

IntroductionConsiderable observational evidence suggests that cancer online support groups reduce feelings of isolation, depression and anxiety, enhance coping and self-management, and lead to better informed patients. Other studies indicate that cancer online support groups can increase distress. Yet no studies theorise the complex, context-dependent mechanisms by which cancer online support groups generate their—sometimes contrasting—outcomes.Methods and analysisGuided by an integrated knowledge translation approach and the strategy for patient-oriented research, we will conduct a realist review of cancer online support groups in partnership with stakeholders. We will follow Pawson’s five steps and existing quality standards to develop a program theory that explains how cancer online support groups work, for whom and in what circumstances. The specific research questions will be: what positive and negative outcomes have been reported on cancer online support groups? What are the mechanisms that are associated with these outcomes, in which contexts and for whom? Through a rigorous review of relevant scientific and grey literature, as well as ongoing dialogue with stakeholders, a program theory will be developed to explain who benefits from cancer online support groups and who does not, what benefits they derive (or do not), and the factors that affect these outcomes.Ethics and disseminationThe use of secondary data for this review precludes the need for ethical approval. Dissemination will be informed by the knowledge-to-action framework and will consist of tailored knowledge products that are conceived of collaboratively with stakeholders. These will include peer-reviewed publications on how cancer online support groups can be optimised and best practice recommendations to maximise the benefits experienced by people with cancer. These traditional scientific outputs, along with their respective evidence summaries, will be amplified through strategic social media events hosted and promoted by knowledge users.PROSPERO registration numberCRD42021250046.

Trained peer navigators can offer valuable peer support and mentorship to cancer patients and caregivers due to their highly relevant and unique perspective about the disease experience. In order to define the role of prostate cancer (PC) peer navigators within the cancer care system, it is important to establish the essential competencies of a PC peer navigator. We systematically identified and verified a set of core competencies for PC peer navigators and present a competency framework for PC peer navigators. In phase 1, we conducted formative research consisting of a literature review and environmental scan as well as a secondary analysis of qualitative interviews. In phase 2, we drafted and mapped competencies. Finally in phase 3, expert stakeholders completed an anonymous survey to indicate whether they endorsed the competencies and to rank the importance of each competency to the peer navigator role. Open-ended feedback was also provided for each competency. Six core competency domains emerged: (1) self as navigator, (2) communication, (3) knowledge/information, (4) facilitate patient-centred care, (5) eHealth/technology, and (6) caregiver needs. Forty-seven core competency statements were mapped to these domains. Expert stakeholders (n = 27) included cancer survivors, caregivers, and healthcare providers. Most (89%) of core competency statements were endorsed by stakeholders and received high priority ratings, whereas only five of the competencies were less uniformly endorsed. This is the first attempt to list core competencies for PC peer navigators and may offer guidance for standardizing the PC peer navigator role and training.

IntroductionProstate cancer (PCa) is the most common cancer in Canadian men. Current models of survivorship care are no longer adequate to address the chronic and complex survivorship needs of patients today. Virtual care models for cancer survivorship have recently been associated with comparable clinical outcomes and lower costs to traditional follow-up care, with patients favouring off-site and on-demand visits. Building on their viability, our research group conceived the Ned Clinic—a virtual PCa survivorship model that provides patients with access to lab results, collects patient-reported outcomes, alerts clinicians to emerging issues, and promotes patient self-care. Despite the promise of the Ned Clinic, the model remains limited by its dependence on oncology specialists, lack of an autonomous triage algorithm, and has only been implemented among PCa survivors living in Ontario.Methods and analysisOur programme of research comprises two main research objectives: (1) to evaluate the process and cost of implementing and sustaining five nurse-led virtual PCa survivorship clinics in three provinces across Canada and identify barriers and facilitators to implementation success and (2) to assess the impact of these virtual clinics on implementation and effectiveness outcomes of enrolled PCa survivors. The design phase will involve developing an autonomous triage algorithm and redesigning the Ned Clinic towards a nurse-led service model. Site-specific implementation plans will be developed to deploy a localised nurse-led virtual clinic at each centre. Effectiveness will be evaluated using a historical control study comparing the survivorship outcomes of 300 PCa survivors enrolled in the Ned Clinic with 300 PCa survivors receiving traditional follow-up care.Ethics and disseminationAppropriate site-specific ethics approval will be secured prior to each research phase. Knowledge translation efforts will include diffusion, dissemination, and application approaches to ensure that knowledge is translated to both academic and lay audiences.

BackgroundCancer and its treatment can significantly impact the short- and long-term psychological well-being of patients and families. Emotional distress and depressive symptomatology are often associated with poor treatment adherence, reduced quality of life, and higher mortality. Cancer support groups, especially those led by health care professionals, provide a safe place for participants to discuss fear, normalize stress reactions, share solidarity, and learn about effective strategies to build resilience and enhance coping. However, in-person support groups may not always be accessible to individuals; geographic distance is one of the barriers for access, and compromised physical condition (eg, fatigue, pain) is another. Emerging evidence supports the effectiveness of online support groups in reducing access barriers. Text-based and professional-led online support groups have been offered by Cancer Chat Canada. Participants join the group discussion using text in real time. However, therapist leaders report some challenges leading text-based online support groups in the absence of visual cues, particularly in tracking participant distress. With multiple participants typing at the same time, the nuances of the text messages or red flags for distress can sometimes be missed. Recent advances in artificial intelligence such as deep learning–based natural language processing offer potential solutions. This technology can be used to analyze online support group text data to track participants’ expressed emotional distress, including fear, sadness, and hopelessness. Artificial intelligence allows session activities to be monitored in real time and alerts the therapist to participant disengagement.ObjectiveWe aim to develop and evaluate an artificial intelligence–based cofacilitator prototype to track and monitor online support group participants’ distress through real-time analysis of text-based messages posted during synchronous sessions.MethodsAn artificial intelligence–based cofacilitator will be developed to identify participants who are at-risk for increased emotional distress and track participant engagement and in-session group cohesion levels, providing real-time alerts for therapist to follow-up; generate postsession participant profiles that contain discussion content keywords and emotion profiles for each session; and automatically suggest tailored resources to participants according to their needs. The study is designed to be conducted in 4 phases consisting of (1) development based on a subset of data and an existing natural language processing framework, (2) performance evaluation using human scoring, (3) beta testing, and (4) user experience evaluation.ResultsThis study received ethics approval in August 2019. Phase 1, development of an artificial intelligence–based cofacilitator, was completed in January 2020. As of December 2020, phase 2 is underway. The study is expected to be completed by September 2021.ConclusionsAn artificial intelligence–based cofacilitator offers a promising new mode of delivery of person-centered online support groups tailored to individual needs.International Registered Report Identifier (IRRID)DERR1-10.2196/21453

Survivorship concerns are common after prostate cancer with many survivors experiencing long-term and late effects of treatment. Patient navigation has been promoted to improve continuity of care. While many studies have examined the potential benefits of patient navigation by health-care professionals for the screening and diagnostic phase, few are focused on peer navigation for prostate cancer patients in the treatment and posttreatment survivorship phase. The purpose of this qualitative descriptive study was to explore the perceptions of men with prostate cancer and the partners of such men regarding their support needs and experiences. In depth, semistructured interviews were conducted with 20 men who were prostate cancer survivors and 4 partners. Qualitative thematic analysis was used to identify themes and patterns across the interviews. According to the results, participants had experienced uncertainty regarding their test results and treatment options. Many participants had dealt with these challenges by researching information and seeking support from health-care professionals, family members, and fellow prostate cancer patients. Four themes are highlighted: (a) dealing with the unknown, (b) everyone is different, (c) keep looking forward, and (d) getting on with it. Overall participants held favorable views of peer support. Sharing one’s experiences with an empathic peer who has completed treatment can reassure the patient that he is not alone. Knowing what to expect empowers men and their partners to manage the illness and effects of treatment. This research provides insights into the scope of patients’ and partners’ informational and psychosocial needs and preferred coping strategies.

Background After a prostate cancer diagnosis, men want information about their disease and treatment options. The internet offers a convenient means to deliver health information to patients with prostate cancer. However, there are concerns about the use of the internet among this largely senior population. Objective This study aimed to determine the patterns and factors associated with the use of the internet as a source of health information among Canadian men with prostate cancer and the features and information required in a website. Methods Population surveys were conducted in four Canadian provinces (British Columbia, Alberta, Saskatchewan, and Ontario) in 2014-2015. Data analyses included descriptive, bivariable, and multivariable analyses. The Pearson Chi-square and univariable regression were used to examine associations between independent variables and health-related internet use. Correlates of health-related internet use were analyzed using multivariable logistic regression. Results A total of 1362 patients responded across the four provinces. The mean age of respondents was 69 years (SD 8.2). In addition, 82% (n=1071) were internet users and 71% (n=910) used the internet daily. Further, 65% (n=784) used the internet as a source of prostate cancer information, and 40% (n=521) were confident about using information obtained from the internet to make health decisions. Men who used the internet to obtain prostate cancer information were more likely to be active information seekers (odds ratio [OR]: 4.5, 95% CI 2.6-7.8), be confident using information from the internet to make health decisions (OR: 3.6, 95% CI 2.3-5.7), have broadband internet access (OR: 1.8, 95% CI 1.2-2.7), and have more unmet supportive care needs (OR: 1.05, 95% CI 1.0-1.1). Top features wanted in a website, reported by more than 50% of respondents, were a library of resources (n=893, 65.6%), tools to support treatment decision making (n=815, 59.8%), and tools to help navigate the prostate cancer journey (n=698, 51.2%). Top three topics of information wanted in such a website were treatment options (n=916, 67.3%), disease progression (n=904, 66.4%), and management of side effects (n=858, 63%). Conclusions Over two-thirds of Canadian patients with prostate cancer surveyed use the internet as a source of health information about prostate cancer, but over half did not feel confident using information from the internet to make health decisions. Being an active information seeker, having confidence in using information from the internet to make health decisions, having broadband internet, and having more unmet supportive care needs were significantly associated with health-related internet use. Future work should examine electronic health literacy interventions as a means to boost men’s confidence in using information from the internet and design websites that include information and features that help men navigate the prostate cancer journey and support treatment decision making and management of side effects.

Improved treatments resulting in a rising number of survivors of breast cancer (bca) calls for optimization of current specialist-based follow-up care. In the present study, we evaluated well survivors of bca with respect to their supportive care needs and attitudes toward follow-up with various care providers, in varying settings, or mediated by technology (for example, videoconference or e-mail). A cross-sectional paper survey of well survivors of early-stage pT1&ndash, 2N0 bca undergoing posttreatment follow-up was completed. Descriptive and univariable logistic regression analyses were performed to examine associations between survivor characteristics, supportive care needs, and perceived satisfaction with follow-up options. Qualitative responses were analyzed using conventional content analysis. The 190 well survivors of bca who participated (79% response rate) had an average age of 63 &plusmn, 10 years. Median time since first follow-up was 21 months. Most had high perceived satisfaction with in-person specialist care (96%, 177 of 185). The second most accepted model was shared care involving specialist and primary care provider follow-up (54%, 102 of 190). Other models received less than 50% perceived satisfaction. Factors associated with higher perceived satisfaction with non-specialist care or virtual follow-up by a specialist included less formal education (p < 0.01) and more met supportive care needs (p < 0.05). Concerns with virtual follow-up included the perceived impersonal nature of virtual care, potential for inadequate care, and confidentiality. Well survivors of bca want specialists involved in their follow-up care. Compared with virtual follow-up, in-person follow-up is perceived as more reassuring. Certain survivor characteristics (for example, met supportive care needs) might signal survivor readiness for virtual or non-specialist follow-up. Future work should examine multi-stakeholder perspectives about barriers to and facilitators of shared multimodal follow-up care.

ObjectivesMoving innovations into healthcare organisations to increase positive health outcomes remains a significant challenge. Even when knowledge and tools are adopted, they often fail to become integrated into the long-term routines of organisations. The objective of this study was to identify factors and processes influencing the sustainability of innovations in cancer survivorship care.DesignQualitative study using semistructured, in-depth interviews, informed by grounded theory. Data were collected and analysed concurrently using constant comparative analysis.Setting25 cancer survivorship innovations based in six Canadian provinces.ParticipantsTwenty-seven implementation leaders and relevant staff from across Canada involved in the implementation of innovations in cancer survivorship.ResultsThe findings were categorised according to determinants, processes and implementation outcomes, and whether a factor was necessary to sustainability, or important but not necessary. Seven determinants, six processes and three implementation outcomes were perceived to influence sustainability. The necessary determinants were (1) management support; (2) organisational and system-level priorities; and (3) key people and expertise. Necessary processes were (4) innovation adaptation; (5) stakeholder engagement; and (6) ongoing education and training. The only necessary implementation outcome was (7) widespread staff and organisational buy-in for the innovation.ConclusionsFactors influencing the sustainability of cancer survivorship innovations exist across multiple levels of the health system and are often interdependent. Study findings may be used by implementation teams to plan for sustainability from the beginning of innovation adoption initiatives.

The authors wish to make the following corrections to this paper [...]

Background: Although facility-based cancer rehabilitation and exercise programs exist, patients are often unable to attend due to distance, cost, and other competing obligations. There is a need for scalable remote interventions that can reach and serve a larger population. Methods: We conducted a mixed methods pilot study to assess the feasibility, acceptability and impact of CaRE@Home: an 8-week online multidimensional cancer rehabilitation and exercise program. Feasibility and acceptability data were captured by attendance and adherence metrics and through qualitative interviews. Preliminary estimates of the effects of CaRE@Home on patient-reported and physically measured outcomes were calculated. Results: A total of n = 35 participated in the study. Recruitment (64%), retention (83%), and adherence (80%) rates, along with qualitative findings, support the feasibility of the CaRE@Home intervention. Acceptability was also high, and participants provided useful feedback for program improvements. Disability (WHODAS 2.0) scores significantly decreased from baseline (T1) to immediately post-intervention (T2) and three months post-intervention (T3) (p = 0.03 and p = 0.008). Physical activity (GSLTPAQ) levels significantly increased for both Total LSI (p = 0.007 and p = 0.0002) and moderate to strenuous LSI (p = 0.003 and p = 0.002) from baseline to T2 and T3. Work productivity (iPCQ) increased from T1 to T3 (p = 0.026). There was a significant increase in six minute walk distance from baseline to T2 and T3 (p &lt, 0.001 and p = 0.010) and in grip strength from baseline to T2 and T3 (p = 0.003 and p &lt, 0.001). Conclusions: Results indicate that the CaRE@Home program is a feasible and acceptable cancer rehabilitation program that may help cancer survivors regain functional ability and decrease disability. In order to confirm these findings, a controlled trial is required.

Purpose This study investigated thyroid cancer (TC) survivors’ perceived satisfaction with and perceptions of survivorship care follow-up options.

Cancer is the most common chronic disease worldwide. Cancer patients report significant unmet supportive care needs. Peer support groups show great promise in meeting cancer patients' supportive care needs, and are considered an important complement to the formal health care system. Virtual communities offer a convenient way for cancer patients to collaborative meet many of their supportive care needs in a timely way. This chapter will present current evidence on: the scope and characteristics of virtual communities for cancer patients; prevalence and predictors of use and reasons for non-use; the nature and function of supportive exchanges in cancer virtual communities, including their limitations; and the potential effects, both positive and negative, of participating in cancer virtual communities on health outcomes. Grounded in social support, technology adoption and health behavior theory, this chapter will offer a multi-theory framework for better understanding for how cancer virtual communities work and under what conditions.

Background Breast cancer is the most common cancer in women. The use of mobile software applications for health and wellbeing promotion has grown exponentially in recent years. We systematically reviewed the breast cancer apps available in today’s leading smartphone application stores and characterized them based on their features, evidence base and target audiences. Methods A cross-sectional study was performed to characterize breast cancer apps from the two major smartphone app stores (iOS and Android). Apps that matched the keywords “breast cancer” were identified and data was extracted using a structured form. Reviewers independently evaluated the eligibility and independently classified the apps. Results A total of 1473 apps were a match. After removing duplicates and applying the selection criteria only 599 apps remained. Inter-rater reliability was determined using Fleiss-Cohen’s Kappa. The majority of apps were free 471 (78.63%). The most common type of application was Disease and Treatment information apps (29.22%), Disease Management (19.03%) and Awareness Raising apps (15.03%). Close to 1 out of 10 apps dealt with alternative or homeopathic medicine. The majority of the apps were intended for patients (75.79%). Only one quarter of all apps (24.54%) had a disclaimer about usage and less than one fifth (19.70%) mentioned references or source material. Gamification specialists determined that 19.36% contained gamification elements. Conclusions This study analyzed a large number of breast cancer-focused apps available to consumers. There has been a steady increase of breast cancer apps over the years. The breast cancer app ecosystem largely consists of start-ups and entrepreneurs. Evidence base seems to be lacking in these apps and it would seem essential that expert medical personnel be involved in the creation of medical apps

Objective To explore the role of online communities from the perspective of breast cancer survivors who are facilitators of face-to-face support groups. Methods Seventy-three attendees (73% response rate) of a Canadian support group-training program completed a questionnaire examining when and why they used online communities. A purposive sample of 12 respondents was interviewed on how they used them in comparison to traditional supportive care. Survey responses were analyzed using descriptive statistics, and interview transcripts using a descriptive interpretive approach. Results Online communities were used by 31.5%, mostly during treatment (73.9%), daily or weekly (91.3%), primarily for information (91.3%) and symptom management (69.6%) and less for emotional support (47.8%). Reasons for non-use were lack of need (48.0%), self-efficacy (30.0%), trust (24.0%), and awareness (20.0%). Respondents used online communities to address unmet needs during periods of stress and uncertainty. A multi-theory framework helps to explain the conditions influencing their use. Conclusion Online communities have the potential to fill gaps in supportive care by addressing the unmet needs of a subgroup of breast cancer survivors. Further research is required among typical cancer survivors. Practice implications Online communities could play an important role as a supplemental resource for a sub-group of breast cancer survivors.

Background: The Internet and social media offer promising ways to improve the reach, efficiency, and effectiveness of recruitment efforts at a reasonable cost, but raise unique ethical dilemmas. We describe how we used social media to recruit cancer patients and family caregivers for a research study, the ethical issues we encountered, and the strategies we developed to address them. Objective: Drawing on the principles of Privacy by Design (PbD), a globally recognized standard for privacy protection, we aimed to develop a PbD framework for online health research recruitment. Methods: We proposed a focus group study on the dietary behaviors of cancer patients and their families, and the role of Web-based dietary self-management tools. Using an established blog on our hospital website, we proposed publishing a recruitment post and sharing the link on our Twitter and Facebook pages. The Research Ethics Board (REB) raised concern about the privacy risks associated with our recruitment strategy; by clicking on a recruitment post, an individual could inadvertently disclose personal health information to third-party companies engaged in tracking online behavior. The REB asked us to revise our social media recruitment strategy with the following questions in mind: (1) How will you inform users about the potential for privacy breaches and their implications? and (2) How will you protect users from privacy breaches or inadvertently sharing potentially identifying information about themselves? Results: Ethical guidelines recommend a proportionate approach to ethics assessment, which advocates for risk mitigation strategies that are proportional to the magnitude and probability of risks. We revised our social media recruitment strategy to inform users about privacy risks and to protect their privacy, while at the same time meeting our recruitment objectives. We provide a critical reflection of the perceived privacy risks associated with our social media recruitment strategy and the appropriateness of the risk mitigation strategies that we employed by assessing their alignment with PbD and by discussing the following: (1) What are the potential risks and who is at risk? (2) Is cancer considered “sensitive” personal information? (3) What is the probability of online disclosure of a cancer diagnosis in everyday life? and (4) What are the public’s expectations for privacy online and their views about online tracking, profiling, and targeting? We conclude with a PbD framework for online health research recruitment. Conclusions: Researchers, REBs, ethicists, students, and potential study participants are often unaware of the privacy risks of social media research recruitment and there is no official guidance. Our PbD framework for online health research recruitment is a resource for these wide audiences. [J Med Internet Res 2017;19(4):e104]

Given the increasing penetration and health care related use of the Internet, we examined the evidence on the impact of Internet-based interventions on pain. A search of Medline, CINAHL, PsycINFO, and the Cochrane Library was conducted for literature published from 1990 to 2010 describing randomized controlled trials that assessed the effects of Internet-based interventions on patients with pain of any kind. Of 6724 citations, 17 articles were included. The studies evaluated the effects of interventions that provided cognitive and behavioral therapy, moderated peer support programs, or clinical visit preparation or follow-up support on 2503 people in pain. Six studies (35.3%) received scores associated with high quality. Most cognitive and behavioral therapy studies showed an improvement in pain (n=7, 77.8%), activity limitation (n=4, 57.1%) and costs associated with treatment (n=3, 100%), whereas effects on depression (n=2, 28.6%) and anxiety (n=2, 50%) were less consistent. There was limited (n=2 from same research group) but promising evidence that Internet-based peer support programs can lead to improvements in pain intensity, activity limitation, health distress and self-efficacy; limited (n=4 from same research group) but promising evidence that social networking programs can reduce pain in children and adolescents; and insufficient evidence on Internet-based clinical support interventions. Internet-based interventions seem promising for people in pain, but it is still unknown what types of patients benefit most. More well-designed studies with diverse patient groups, active control conditions, and a better description of withdrawals are needed to strengthen the evidence concerning the impact of Internet-based interventions on people in pain.

Objective To combine insights from multiple disciplines into a set of questions that can be used to investigate contextual factors affecting health decision making. Background Decision-making processes and outcomes may be shaped by a range of non-medical or contextual factors particular to an individual including social, economic, political, geographical and institutional conditions. Research concerning contextual factors occurs across many disciplines and theoretical domains, but few conceptual tools have attempted to integrate and translate this wideranging research for health decision-making purposes.

To explore the questions that community-dwelling individuals with a traumatic spinal cord injury (SCI) have regarding their chronic pain and to identify their preferred methods of acquiring this information.Semi-structured interviews were conducted with 12 individuals experiencing SCI-related chronic pain. Qualitative content analysis was used to identify participants' questions about their pain and to organise them according to emergent themes.Six themes pertaining to chronic pain were identified. These included: (1) cause, (2) communication, (3) expectation, (4) getting information, (5) management and (6) other's experience with chronic pain. Participants described using a variety of sources to obtain information about chronic pain including health care providers, other SCI-consumers and the Internet. Participants preferred to have chronic pain information available to them on an as needed basis.Individuals with SCI have numerous questions about their chronic pain and use a variety of information sources to answer them. Many are dissatisfied with the level of knowledge that family physicians have about SCI-related chronic pain. This study provides valuable information from the consumer's perspective, which can be used to develop interventions to help health care professionals and consumers manage SCI-related chronic pain.

Background: Patients with chronic conditions require ongoing care which not only necessitates support from health care providers outside appointments but also self-management. Web-based tools for text-based patient-provider communication, such as secure messaging, allow for sharing of contextual information and personal narrative in a simple accessible medium, empowering patients and enabling their providers to address emerging care needs. Objective: The objectives of this study were to (1) conduct a systematic search of the published literature and the Internet for Web-based tools for text-based communication between patients and providers; (2) map tool characteristics, their intended use, contexts in which they were used, and by whom; (3) describe the nature of their evaluation; and (4) understand the terminology used to describe the tools. Methods: We conducted a scoping review using the MEDLINE (Medical Literature Analysis and Retrieval System Online) and EMBASE (Excerpta Medica Database) databases. We summarized information on the characteristics of the tools (structure, functions, and communication paradigm), intended use, context and users, evaluation (study design and outcomes), and terminology. We performed a parallel search of the Internet to compare with tools identified in the published literature. Results: We identified 54 papers describing 47 unique tools from 13 countries studied in the context of 68 chronic health conditions. The majority of tools (77%, 36/47) had functions in addition to communication (eg, viewable care plan, symptom diary, or tracker). Eight tools (17%, 8/47) were described as allowing patients to communicate with the team or multiple health care providers. Most of the tools were intended to support communication regarding symptom reporting (49%, 23/47), and lifestyle or behavior modification (36%, 17/47). The type of health care providers who used tools to communicate with patients were predominantly allied health professionals of various disciplines (30%, 14/47), nurses (23%, 11/47), and physicians (19%, 9/47), among others. Over half (52%, 25/48) of the tools were evaluated in randomized controlled trials, and 23 tools (48%, 23/48) were evaluated in nonrandomized studies. Terminology of tools varied by intervention type and functionality and did not consistently reflect a theme of communication. The majority of tools found in the Internet search were patient portals from 6 developers; none were found among published articles. Conclusions: Web-based tools for text-based patient-provider communication were identified from a wide variety of clinical contexts and with varied functionality. Tools were most prevalent in contexts where intended use was self-management. Few tools for team-based communication were found, but this may become increasingly important as chronic disease care becomes more interdisciplinary. [J Med Internet Res 2017;19(10):e366]

Background: Mobile phones have become nearly ubiquitous, offering a promising means to deliver health interventions. However, little is known about smartphone applications (apps) for cancer. Objective: The purpose of this study was to characterize the purpose and content of cancer-focused smartphone apps available for use by the general public and the evidence on their utility or effectiveness. Methods: We conducted a systematic review of the official application stores for the four major smartphone platforms: iPhone, Android, Nokia, and BlackBerry. Apps were included in the review if they were focused on cancer and available for use by the general public. This was complemented by a systematic review of literature from MEDLINE, Embase, and the Cochrane Library to identify evaluations of cancer-related smartphone apps. Results: A total of 295 apps from the smartphone app stores met the inclusion criteria. The majority of apps targeted breast cancer (46.8%, 138/295) or cancer in general (28.5%, 84/295). The reported app purpose was predominantly to raise awareness about cancer (32.2%, 95/295) or to provide educational information about cancer (26.4%, 78/295), followed by apps to support fundraising efforts (12.9%, 38/295), assist in early detection (11.5%, 34/295), promote a charitable organization (10.2%, 30/295), support disease management (3.7%, 11/295), cancer prevention (2.0%, 6/295), or social support (1.0%, 3/295). The majority of the apps did not describe their organizational affiliation (64.1%, 189/295). Apps affiliated with non-profit organizations were more likely to be free of cost (χ 2 1 =16.3, P

Online communities have been heralded as one of the most promising health resources on the Internet. The purpose of this study was to identify the characteristics and levels of use of online communities for breast cancer survivors.Using Google, we identified websites with a string of computer-mediated communication terms and individual queries of three to five words of online community terms. This was complemented by a review of website resource lists and personal libraries. Two reviewers independently extracted information on their general characteristics and number of members and message board posts. A coding scheme guided content analysis.We found 111 websites. Most sites (n = 64, 65.8 %) had a broad focus (e.g., health, cancer, or general). One third (n = 38, 34.2 %) were exclusive to breast cancer and 11 catered to specific disease characteristics. The majority were American (n = 79, 75.2 %), nonprofit (55.0 %), and moderated (69.5 %). Most moderators (85.7 %) were staff or community members; eight sites were moderated by health professionals. Greater than one-third of sites (n = 40, 36 %) were initiated by breast cancer survivors or loved ones. Breast cancer-specific sites contained a total of 4,186,275 posts. One-third (n = 10) contained 93.4 % of posts, displaying over 100,000 posts each. As of April 3, 2012, eight sites were discontinued.There is a wide range of online communities available for breast cancer survivors with extensive archives of personal illness experiences. Future efforts should focus on identifying the factors that determine their success and effectiveness.

New models of survivorship care are required to address the needs of genitourinary (GU) cancer survivors. Current approaches do not effectively engage cancer survivors or advocacy groups. A group of clinicians in collaboration with the Canadian Urologic Association held a forum for GU cancer survivors, advocacy groups, and health professionals to explore ways to collaboratively enhance survivorship care. Participants attended a 2-day conference that included presentations, breakout groups, and a postconference survey. Discussions by breakout groups were recorded and analyzed alongside open-ended survey responses for common themes. Basic statistics were calculated. Conference participants (n = 42) included 18 cancer survivors/caregivers, 21 health professionals, and 3 researchers representing bladder, kidney, prostate, and testis cancer groups. Breakout group discussions and responses to the postconference survey (83.3 % response rate) showed strong support for greater collaboration among all parties. Strategies to facilitate collaboration reflected a need to: (1) raise awareness of the shared and unique needs of GU cancer survivors and the expertise of cancer advocacy groups, (2) facilitate communication and collaborative opportunities among clinicians/researchers and cancer survivors/advocacy groups, (3) facilitate collaborative programming and fund-raising among GU advocacy groups, and (4) synthesize and facilitate access to GU cancer survivorship resources and services. There is strong support for formal collaboration to enhance survivorship care among a critical mass of GU cancer survivors, advocacy groups, clinicians, and researchers. Responsibility for collaboration lies with all stakeholder groups. Strategies to foster such partnerships should employ integrated knowledge translation approaches that actively engage all parties throughout the entire research to practice process. Successful partnerships between cancer survivors, advocacy groups, clinicians, and researchers require familiarity with each other’s expertise, along with sufficient resources and organizational structures. GU survivorship advocacy groups need to work more closely together to ensure a strong, unified voice when interacting with clinicians and researchers.

The supportive care needs of testicular cancer survivors have not been comprehensively studied. Likewise, there is limited research on their use of the Internet or social media applications—tools that are popular among young adults and which could be used to address their needs. Two hundred and four testicular cancer patients receiving care at an urban cancer center completed a questionnaire assessing supportive care needs and the use and preferences for online support. We examined the associations between patient characteristics and met or unmet supportive care needs and the use of testicular cancer online communities. Respondents had more met (median 8.0, interquartile range (IQR) 10.0) than unmet (median 2.0, IQR 7.0) needs. The majority (62.5%) reported at least one unmet need, most commonly (25%) concerning financial support, body image, stress, being a cancer survivor, and fear of recurrence. Patients who were younger, had nonseminoma testicular cancer, or received treatment beyond surgery had more needs, and those who were unemployed had more unmet needs. The majority of respondents (71.5%) were social media users (e.g., Facebook), and 26% had used a testicular cancer online support community. Reasons for nonuse were lack of awareness (34.3%), interest (30.9%), trust (4.9%), and comfort using computers (2.5%). Users were more likely to speak English as a first language and have more needs. At least one in four testicular cancer survivors has unmet needs related to financial support, body image, stress, being a cancer survivor, and fear of recurrence. A web-based resource may be a useful strategy to consider given the high prevalence of social media use in this sample and their desire for online support. Efforts are needed to raise awareness about online peer support resources and to overcome barriers to their use.

BackgroundSocial network sites have been growing in popularity across broad segments of Internet users, and are a convenient means to exchange information and support. Research on their use for health-related purposes is limited. ObjectiveThis study aimed to characterize the purpose, use, and creators of Facebook groups related to breast cancer. MethodsWe searched Facebook (www.Facebook.com) using the term breast cancer. We restricted our analysis to groups that were related to breast cancer, operated in English, and were publicly available. Two of us independently extracted information on the administrator and purpose of the group, as well as the number of user-generated contributions. We developed a coding scheme to guide content analysis. ResultsWe found 620 breast cancer groups on Facebook containing a total of 1,090,397 members. The groups were created for fundraising (277/620, 44.7%), awareness (236, 38.1%), product or service promotion related to fundraising or awareness (61, 9%), or patient/caregiver support (46, 7%). The awareness groups as a whole contained by far the most members (n = 957,289). The majority of groups (532, 85.8%) had 25 wall posts or fewer. The support oriented groups, 47% (27/57) of which were established by high school or college students, were associated with the greatest number of user-generated contributions. ConclusionsFacebook groups have become a popular tool for awareness-raising, fundraising, and support-seeking related to breast cancer attracting over one million users. Given their popularity and reach, further research is warranted to explore the implications of social network sites as a health resource across various health conditions, cultures, ages, and socioeconomic groups.

Background Website evaluation is a key issue for researchers, organizations, and others responsible for designing, maintaining, endorsing, approving, and/or assessing the use and impact of interventions designed to influence health and health services. Traditionally, these evaluations have included elements such as content credibility, interface usability, and overall design aesthetics. With the emergence of collaborative, adaptive, and interactive ("Web 2.0") technologies such as wikis and other forms of social networking applications, these metrics may no longer be sufficient to adequately assess the quality, use or impact of a health website. Collaborative, adaptive, interactive applications support different ways for people to interact with health information on the Web, including the potential for increased user participation in the design, creation, and maintenance of such sites. Objective We propose a framework that addresses how to evaluate collaborative, adaptive, and interactive applications. Methods In this paper, we conducted a comprehensive review of a variety of databases using terminology related to this area. Results We present a review of evaluation frameworks and also propose a framework that incorporates collaborative, adaptive, and interactive technologies, grounded in evaluation theory. Conclusion This framework can be applied by researchers who wish to compare Web-based interventions, non-profit organizations, and clinical groups who aim to provide health information and support about a particular health concern via the Web, and decisions about funding grants by agencies interested in the role of social networks and collaborative, adaptive, and interactive technologies technologies to improve health and the health system.

Research indicates that patients feel more satisfied and obtain better health outcomes when they are able to discuss their questions with their health professionals. A better understanding of cancer patients' questions may help guide interventions to address their information needs and improve pain management. This study sought to explore and describe the questions that women with breast cancer have about pain related to cancer. Semistructured interviews were conducted with women with pain related to breast cancer or its treatment, recruited from a large teaching hospital in Toronto, Canada. Interviews were audio recorded and fully transcribed. Data saturation was reached after 18 participants were interviewed. Analysis involved the identification of themes and the development of a taxonomy of questions about pain. In total, over 200 questions concerning seven main themes were identified: (1) understanding cancer pain, (2) knowing what to expect, (3) options for pain control, (4) coping with cancer pain, (5) talking with others with cancer pain, (6) finding help managing cancer pain, and (7) describing pain. The information collected suggests that formulating and articulating questions about pain is a context-dependent, time-intensive process that requires reflection, knowledge, and a good use of language. Patients have numerous and diverse questions about pain and its treatment, which may be difficult to address within the context of a typical consultation. To manage pain adequately, innovative efforts are needed to enable patients and health professionals to recognize, articulate, and answer such questions. Internet-based tools could provide some of these solutions.

Fostering the Partnership was a unique and innovative forum for genitourinary (GU) cancer survivors, advocacy groups and health care professionals (HCPs) to explore ways to collaboratively enhance GU cancer survivorship. The idea evolved from the growing recognition that new models of care are required to: (a) meet the diverse needs of an increasingly active and informed patient population; (b) respond to the desire of cancer survivors to give back; and (c) leverage their growing skill set as expert patients and potential research collaborators. The event, endorsed by the Canadian Urological Association, the Canadian Uro-Oncology Group and the Urology Nurses of Canada, and supported by industry partners, was held on January 19–20, 2011 in King City, Ontario. Forty-three individuals attended: 18 cancer survivors/caregivers, 22 HCPs and 3 researchers representing bladder, kidney, prostate and testicular cancers, clinical subspecialties and GU patient advocacy groups, including Bladder Cancer Canada, Kidney Cancer Canada, Prostate Cancer Canada and the Canadian Testicular Cancer Association. The event was an overwhelming success. Evaluations showed that 99% of attendees were extremely pleased with the event and would like to hold another. The following were identified as priorities. Meeting participants would like the Canadian GU community to recognize them as important future initiatives. Review current strategies and best practices that foster partnerships between cancer survivors and HCPs. Assess the knowledge of HCPs regarding the needs of GU cancer survivors, existing advocacy groups/community support organizations and their services, as well as barriers and facilitators for promoting active partnerships with cancer survivors. Establish priorities for GU cancer survivorship research with collaborative input from and participation by GU cancer survivors and HCPs. Facilitate direct communication, knowledge exchange and collaboration between GU cancer survivor advocacy groups and the HCPs. Facilitate networking, collaborative programming and fundraising among GU cancer survivor advocacy groups. Define the ideal patient journey for each GU cancer type, identify gaps in current services, and disseminate tools (e.g., Survivorship Care Plan/ Passport to Health) to facilitate improvement in these areas. Synthesize up-to-date information about GU cancer survivor advocacy groups/community support organizations and their services in an easy-to-access, web-based format for HCPs and cancer survivors. Facilitate ongoing opportunities for peer-to-peer support, community building and networking among GU cancer survivors throughout the cancer journey. Hold a follow-up conference led collaboratively by GU cancer survivors and HCPs based on the recommendations of this report. This is our “Call to Arms” to you, our colleagues. It is time to embrace survivorship in our practices and address these priorities. A complete description of the event, its recommendations and strategies to accomplish them is forthcoming.