Improving Childhood Cancer Survivor Care Through Web-Based Platforms.

Survivors of childhood cancer are at increased risk for late effects of cancer therapy, but evidence suggests that adherence to follow-up care is suboptimal. Here, we review the barriers to adherence, including those unique to childhood cancer survivors, and the rationale for distribution of a survivorship care plan. We also discuss advantages and potential limitations of delivering survivorship care plans via web-based platforms, and describe the unique features of one of these platforms, Passport for Care. A baseline survey directed toward survivors and conducted through Passport for Care found that a significant proportion of survivors are unaware of their specific health risks resulting from cancer and its treatment, and compared with their parents, are less afraid of the risks of recurrence and of cancer therapy-associated late effects (n = 528). Web-based platforms such as Passport for Care have enormous potential for improving access to health information, as well as for enhancing patient, family caregiver, and healthcare provider awareness of both risks of late effects and recommended surveillance. Results from this survey also suggest the potential utility of leveraging these tools to conduct additional research on consenting survivors.

Dissemination of Evidence From Systematic Reviews Through Academic CME Providers: A Feasibility Study.

INTRODUCTION: Although systematic reviews represent a source of best evidence to support clinical decision-making, reviews are underutilized by clinicians. Barriers include lack of awareness, familiarity, and access. Efforts to promote utilization have focused on reaching practicing clinicians, leaving unexplored the roles of continuing medical education (CME) directors and faculty in promoting systematic review use. This study explored the feasibility of working with CME directors and faculty for that purpose. METHODS: A convenience sample of five academic CME directors and faculty agreed to participate in a feasibility study exploring use in CME courses of systematic reviews from the Agency for Healthcare Research and Quality (AHRQ-SRs). AHRQ-SR topics addressed the comparative effectiveness of health care options. Participants received access to AHRQ-SR reports, associated summary products, and instructional resources. The feasibility study used mixed methods to assess 1) implementation of courses incorporating SR evidence, 2) identification of facilitators and barriers to integration, and 3) acceptability to CME directors, faculty, and learners. RESULTS: Faculty implemented 14 CME courses of varying formats serving 1700 learners in urban, suburban, and rural settings. Facilitators included credibility, conciseness of messages, and availability of supporting materials; potential barriers included faculty unfamiliarity with SRs, challenges in maintaining review currency, and review scope. SR evidence and summary products proved acceptable to CME directors, course faculty, and learners by multiple measures. DISCUSSION: This study demonstrates the feasibility of approaches to use AHRQ-SRs in CME courses/programming. Further research is needed to demonstrate generalizability to other types of CME providers and other systemic reviews.

Understanding Age-based Transition Needs: Perspectives from Adolescents and Adults with Congenital Heart Disease.

OBJECTIVE: The purpose of this study was to explore the transition process in congenital heart disease (CHD) care through the perceived needs and concerns of adolescents (pretransition) and the experiential insight from adults (post-transition), in order to inform future transition initiatives and information delivery methods. DESIGN: In this cross-sectional study, adolescents and adults with moderate or complex CHD participated in semistructured telephone interviews. Interview transcripts were coded using NVivo qualitative data software. SETTING: Single large urban tertiary care CHD center PATIENTS: Adolescents (between 16 and 20 years of age) and adults (21-40 years of age) with moderate or complex CHD. Patients with global developmental delay or known chromosomal abnormalities were excluded. Twenty adolescents and 20 adults participated in the study; each interview allowed for participants to discuss issues relevant to them. RESULTS: Among adolescents, half wanted more CHD information and half were concerned about becoming adults with CHD. All adolescents had access to the Internet via a mobile phone, but only 55% had searched online for CHD information. Adolescents were interested in mentorship with other adolescents (90%) and adults (60%) with CHD either in person or via protected social media. Among adults, 55% were satisfied with the amount of information they had received as adolescents. Areas in which adults would have preferred additional information include longer-term implications of CHD, employment, insurance, family planning, and mental health. CONCLUSIONS: There are similarities and differences in the perceived transition needs of a diverse group of adolescents and adults with CHD. Both cohorts desire additional information during the transition process, including interest in use of a transition checklist to learn about managing their CHD. Adolescents are interested in interactions with other teens and adult mentors with CHD and are open to Internet-based interventions. Web-based initiatives could deliver CHD information and provide a platform for social media mentorship.