David Wiljer

Testicular Cancer Survivorship: Research Strategies and Recommendations

Testicular cancer represents the most curable solid tumor, with a 10-year survival rate of more than 95%. Given the young average age at diagnosis, it is estimated that effective treatment approaches, in particular, platinum-based chemotherapy, have resulted in an average gain of several decades of life. This success, however, is offset by the emergence of considerable long-term morbidity, including second malignant neoplasms, cardiovascular disease, neurotoxicity, nephrotoxicity, pulmonary toxicity, hypogonadism, decreased fertility, and psychosocial problems. Data on underlying genetic or molecular factors that might identify those patients at highest risk for late sequelae are sparse. Genome-wide association studies and other translational molecular approaches now provide opportunities to identify testicular cancer survivors at greatest risk for therapy-related complications to develop evidence-based long-term follow-up guidelines and interventional strategies. We review research priorities identified during an international workshop devoted to testicular cancer survivors. Recommendations include 1) institution of lifelong follow-up of testicular cancer survivors within a large cohort setting to ascertain risks of emerging toxicities and the evolution of known late sequelae, 2) development of comprehensive risk prediction models that include treatment factors and genetic modifiers of late sequelae, 3) elucidation of the effect(s) of decades-long exposure to low serum levels of platinum, 4) assessment of the overall burden of medical and psychosocial morbidity, and 5) the eventual formulation of evidence-based long-term follow-up guidelines and interventions. Just as testicular cancer once served as the paradigm of a curable malignancy, comprehensive follow-up studies of testicular cancer survivors can pioneer new methodologies in survivorship research for all adult-onset cancer.

Patient Accessible Electronic Health Records: Exploring Recommendations for Successful Implementation Strategies

Background Providing patients with access to their electronic health records offers great promise to improve patient health and satisfaction with their care, as well to improve professional and organizational approaches to health care. Although many benefits have been identified, there are many questions about best practices for the implementation of patient accessible Electronic Health Records (EHRs). Objectives To develop recommendations to assist health care organizations in providing patients with access to EHRs in a meaningful, responsible, and responsive manner. Methods A Patient Accessible Electronic Health Record (PAEHR) Workshop was held with nationally and internationally renowned experts to explore issues related to providing patient access to the EHR and managing institutional change. Results The PAEHR Workshop was attended by 45 participants who discussed recommendations for the implementation of patient accessible EHRs. Recommendations were discussed under four subject domains: (1) providing patient access to the EHR, (2) maintaining privacy and confidentiality related to the PAEHR, (3) patient education and navigation of the PAEHR, and (4) strategies for managing institutional change. The discussion focused on the need for national infrastructure, clear definitions for privacy, security and confidentiality, flexible, interoperable solutions, and patient and professional education. In addition, there was a strong call for research into all domains of patient accessible EHRs to ensure the adoption of evidence-based practices. Conclusions Patient access to personal health information is a fundamental issue for patient engagement and empowerment. Health care professionals and organizations should consider the potential benefits and risks of patient access when developing EHR strategies. Flexible, standardized, and interoperable solutions must be integrated with outcomes-based research to activate effectively patients as partners in their health care.

Finding a depression app: a review and content analysis of the depression app marketplace.

Background Depression is highly prevalent and causes considerable suffering and disease burden despite the existence of wide-ranging treatment options. Mobile phone apps offer the potential to help close this treatment gap by confronting key barriers to accessing support for depression. Objectives Our goal was to identify and characterize the different types of mobile phone depression apps available in the marketplace. Methods A search for depression apps was conducted on the app stores of the five major mobile phone platforms: Android, iPhone, BlackBerry, Nokia, and Windows. Apps were included if they focused on depression and were available to people who self-identify as having depression. Data were extracted from the app descriptions found in the app stores. Results Of the 1054 apps identified by the search strategy, nearly one-quarter (23.0%, 243/1054) unique depression apps met the inclusion criteria. Over one-quarter (27.7%, 210/758) of the excluded apps failed to mention depression in the title or description. Two-thirds of the apps had as their main purpose providing therapeutic treatment (33.7%, 82/243) or psychoeducation (32.1%, 78/243). The other main purpose categories were medical assessment (16.9%, 41/243), symptom management (8.2%, 20/243), and supportive resources (1.6%, 4/243). A majority of the apps failed to sufficiently describe their organizational affiliation (65.0%, 158/243) and content source (61.7%, 150/243). There was a significant relationship (χ 2 5=50.5, P<.001) between the main purpose of the app and the reporting of content source, with most medical assessment apps reporting their content source (80.5%, 33/41). A fifth of the apps featured an e-book (20.6%, 50/243), audio therapy (16.9%, 41/243), or screening (16.9%, 41/243) function. Most apps had a dynamic user interface (72.4%, 176/243) and used text as the main type of media (51.9%, 126/243), and over a third (14.4%, 35/243) incorporated more than one form of media. Conclusion Without guidance, finding an appropriate depression app may be challenging, as the search results yielded non-depression–specific apps to depression apps at a 3:1 ratio. Inadequate reporting of organization affiliation and content source increases the difficulty of assessing the credibility and reliability of the app. While certification and vetting initiatives are underway, this study demonstrates the need for standardized reporting in app stores to help consumers select appropriate tools, particularly among those classified as medical devices.

Is Canada ready for patient accessible electronic health records? A national scan

BackgroundAccess to personal health information through the electronic health record (EHR) is an innovative means to enable people to be active participants in their own health care. Currently this is not an available option for consumers of health. The absence of a key technology, the EHR, is a significant obstacle to providing patient accessible electronic records. To assess the readiness for the implementation and adoption of EHRs in Canada, a national scan was conducted to determine organizational readiness and willingness for patient accessible electronic records.MethodsA survey was conducted of Chief Executive Officers (CEOs) of Canadian public and acute care hospitals.ResultsTwo hundred thirteen emails were sent to CEOs of Canadian general and acute care hospitals, with a 39% response rate. Over half (54.2%) of hospitals had some sort of EHR, but few had a record that was predominately electronic. Financial resources were identified as the most important barrier to providing patients access to their EHR and there was a divergence in perceptions from healthcare providers and what they thought patients would want in terms of access to the EHR, with providers being less willing to provide access and patients desire for greater access to the full record.ConclusionAs the use of EHRs becomes more commonplace, organizations should explore the possibility of responding to patient needs for clinical information by providing access to their EHR. The best way to achieve this is still being debated.

The evaluation of learner outcomes in interprofessional continuing education: A literature review and an analysis of survey instruments

Background: Interprofessional education (IPE) is thought to be important in fostering interprofessional practice (IPP) and in optimizing patient care, but formal evaluation is lacking. Aim: To identify, through review of IPE evaluation instruments in the context of Barr/Kirkpatricks hierarchy of IPE learner outcomes, the comprehensiveness of current evaluation strategies and gaps needing to be addressed. Methods: MEDLINE and CINAHL were searched for work relating to IPE/IPP evaluation published between 1999 and September 2010 that contained evaluation tools. Tool items were stratified by learner outcome. Trends and gaps in tool use and scope were evaluated. Results: One hundred and sixty three articles were reviewed and 33 relevant tools collected. Twenty-six (78.8%) were used in only one paper each. Five hundred and thirty eight relevant items were identified, with 68.0% assessing changes in perceptions of IPE/IPP. Fewer items were found to assess learner reactions (20.6%), changes in behaviour (9.7%), changes in knowledge (1.3%) and organizational practice (0.004%). No items addressed benefits to patients; most were subjective and could not be used to assess such higher level outcomes. Conclusions: No gold-standard tool has been agreed upon in the literature, and none fully addresses all IPE learner outcomes. Objective measures of higher level outcomes are necessary to ensure comprehensive evaluation of IPE/IPP.

The anxious wait: assessing the impact of patient accessible EHRs for breast cancer patients

BackgroundPersonal health records (PHRs) provide patients with access to personal health information (PHI) and targeted education. The use of PHRs has the potential to improve a wide range of outcomes, including empowering patients to be more active participants in their care. There are a number of widespread barriers to adoption, including privacy and security considerations. In addition, there are clinical concerns that patients could become anxious or distressed when accessing complex medical information. This study assesses the implementation of a PHR, and its impact on anxiety levels and perceptions of self-efficacy in a sample of breast cancer patients.MethodsA quasi-experimental pre-test/post-test design was used to collect data from participants to evaluate the use of the PHR. Study participants completed background and pre-assessment questionnaires and were then registered into the portal. By entering an activation key, participants were then able to review their lab results and diagnostic imaging reports. After six weeks, participants completed post-assessment questionnaires and usability heuristics. All data were collected using an online survey tool. Data were cleaned and analyzed using SAS v9.1.ResultsA total of 311 breast cancer patients completed demographic and pre-assessment questionnaires, 250 registered to use the online intervention, and 125 participants completed all required study elements. Matching the pre- and post-anxiety scores demonstrated a decrease in mean anxiety scores (-2.2, p = 0.03); the chemotherapy sub-group had a statistically insignificant mean increase (1.8, p = .14). There was no mean change in self-efficacy scores.ConclusionsParticipants generally found the portal easy to use; however, the perceived value of improved participation was not detected in the self-efficacy scores. Having access to personal health information did not increase anxiety levels. While these results suggest that the use of this PHR may be of benefit for informing patients, further research is required to investigate the impact on the patients experiences, their participation in their care, their relationships with the health care team, and their health outcomes.

Youth Mental Health Interventions via Mobile Phones: A Scoping Review

Mobile phone technologies have been hailed as a promising means for delivering mental health interventions to youth and adolescents, the age group with high cell phone penetration and with the onset of 75% of all lifetime mental disorders. Despite the growing evidence in physical health and adult mental health, however, little information is available about how mobile phones are implemented to deliver mental health services to the younger population. The purpose of this scoping study was to map the current state of knowledge regarding mobile mental health (mMental Health) for young people (age 13-24 years), identify gaps, and consider implications for future research. Seventeen articles that met the inclusion criteria provided evidence for mobile phones as a way to engage youth in therapeutic activities. The flexibility, interactivity, and spontaneous nature of mobile communications were also considered advantageous in encouraging persistent and continual access to care outside clinical settings. Four gaps in current knowledge were identified: the scarcity of studies conducted in low and middle income countries, the absence of information about the real-life feasibility of mobile tools, the need to address the issue of technical and health literacy of both young users and health professionals, and the need for critical discussion regarding diverse ethical issues associated with mobile phone use. We suggest that mMental Health researchers and clinicians should carefully consider the ethical issues related to patient-practitioner relationship, best practices, and the logic of self-surveillance.

Psychosexual distress in women with gynecologic cancer: a feasibility study of an online support group

The psychosexual concerns of gynecologic cancer patients are often unaddressed and there are limited resources available for women to deal with this highly sensitive topic. This feasibility study examines the participation rates and preliminary outcomes for an online support group designed specifically for women who are sexually distressed subsequent to gynecologic cancer treatment

Testicular cancer survivors' supportive care needs and use of online support: a cross-sectional survey

IntroductionThe 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.MethodsTwo 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.ResultsRespondents 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.ConclusionsAt 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.

A Qualitative Study of an Internet-Based Support Group for Women with Sexual Distress Due to Gynecologic Cancer

Internet-based support groups for cancer patients have been studied extensively; very few have focused on gynecologic cancer. We pilot-tested a web-based support group for gynecologic cancer patients and assessed women’s perceptions of the intervention. Twenty-seven gynecologic cancer patients were randomized to an immediate intervention or a waitlist control group. Women participated in a 12-week, web-based support group focusing on sexuality-related topics. Semi-structured interviews were conducted to investigate the feasibility and efficacy of the intervention. Women reported benefits to participating in the intervention, including receiving support from group members and moderators, increased emotional well-being, improved feelings of body image and sexuality, and comfort in discussing sexuality online. Web-based support groups are both feasible and accepted by gynecologic cancer patients with psychosexual distress. The online format provided women with easy access to the support group and anonymity in discussing psychosexual concerns. Women with gynecologic cancer may benefit from participating in online support groups which provide an environment of relative anonymity to discuss psychosexual concerns.