Improving Transitions of Care for Young Adults With Congenital Heart Disease: Mobile App Development Using Formative Research.

Background: Congenital heart diseases (CHDs) are the most common type of birth defects. Improvements in CHD care have led to approximately 1.4 million survivors reaching adulthood. Successful transition and transfer from pediatric to adult care is crucial. Unfortunately, less than 30% of adolescents with CHD successfully transition to adult care; this number is lower for minority and lower socioeconomic status populations. Few CHD programs exist to facilitate successful transition. Objective: The goal of our study was to describe the formative research used to develop a prototype mobile app to facilitate transition to adult care for adolescents with CHD. Methods: A literature search about best practices in transition medicine for CHD was conducted to inform app development. Formative research with a diverse group of CHD adolescents and their parents was conducted to determine gaps and needs for CHD transition to adult care. As part of the interview, surveys assessing transition readiness and CHD knowledge were completed. Two adolescent CHD expert panels were convened to inform educational content and app design. Results: The literature review revealed 113 articles, of which 38 were studies on transition programs and attitudes and 3 identified best practices in transition specific to CHD. A total of 402 adolescents aged 15 to 22 years (median 16 years) participated in semistructured interviews. The group was racially and ethnically diverse (12.6% [51/402] African American and 37.8% [152/402] Latino) and 42.0% (169/402) female; 36.3% (146/402) received public insurance. Most adolescents (313/402, 76.7%) had moderate or severe CHD complexity and reported minimal CHD understanding (79.0% [275/348] of those aged 15 to 17 years and 61.1% [33/54] of those aged 18 to 22 years). Average initial transition readiness score was 50.9/100, meaning that transition readiness training was recommended. When participants with moderate to severe CHD (313/402, 77.9%) were asked about technology use, 94.2% (295/313) reported having access to a mobile phone. Interviews with parents revealed limited interactions with the pediatric cardiologist about transition-related topics: 79.4% (331/417) reported no discussions regarding future family planning, and 55.2% (230/417) reported the adolescent had not been screened for mental health concerns (depression, anxiety). Further, 66.4% (277/417) reported not understanding how health care changes as adolescents become adults. Adolescents in the expert panels (2 groups of 3 adolescents each) expressed interest in a CHD-specific tailored app consisting of quick access to specific educational questions (eg, "Can I exercise?"), a CHD story-blog forum, a mentorship platform, a question and answer space, and a checklist to facilitate transition. They expressed interest in using the app to schedule CHD clinic appointments and receive medication reminders. Based on this data, a prototype mobile app was created to assist in adolescent CHD transition. Conclusions: Formative research revealed that most adolescents with CHD had access to mobile phones, were not prepared for transition to adult care, and were interested in an app to facilitate transition to adult CHD care. Understanding adolescent and parent needs, interests, and concerns helped in the development of a mobile app with a broader, tailored approach for adolescents with CHD.

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.

Academic Peer Detailing-The Preparation and Experience of Detailers Involved in a Project to Disseminate a Comparative Effectiveness Module.

INTRODUCTION: Academic detailing uses communication skills, relationship building, and feedback to facilitate behavior change. This report, part of a larger initiative to disseminate evidence summaries of systematic reviews, demonstrates the feasibility of disseminating a comparative effectiveness module to physicians using peer detailers and examines the development of faculty for this process. We describe planning and implementation of a train-the-detailer session, detailer reactions to the process, and results of the dissemination project. METHODS: We recruited 10 experienced primary care clinical faculties in Family and Social Medicine at the Albert Einstein College of Medicine. Detailers attended a 90-minute train-the-detailer session and detailed 150 practitioners at community practices. We evaluated the experiences of the learners and detailers with questionnaires, a focus group, and individual interviews of the detailers. RESULTS: The experiences of detailing in different contexts were uniformly positive. Learners felt the materials were valuable, and that they would implement them or already had implemented them. In the postsurvey completed by 65 of the 150 detailed learners, 97% percent stated that they changed their practice or had already incorporated the practice change before the detailing. All detailers reported a change in their own practice. Detailers found the teaching materials and detailers' guide helpful. Some initially expressed a concern about not knowing enough, which lessened with detailing experience. DISCUSSION: Peer detailing seems doable and well received, especially with the availability of high quality, previously prepared, and tested evidence-based content and materials. Detailers were easily recruited and trained to apply their teaching skills in this new format. The amount of time spent in training sessions on detailing training as opposed to content mastery can be adjusted depending on faculty needs.

onlineDeCISion.org: a web-based decision aid for DCIS treatment.

Women diagnosed with DCIS face complex treatment decisions and often do so with inaccurate and incomplete understanding of the risks and benefits involved. Our objective was to create a tool to guide these decisions for both providers and patients. We developed a web-based decision aid designed to provide clinicians with tailored information about a patient's recurrence risks and survival outcomes following different treatment strategies for DCIS. A theoretical framework, microsimulation model (Soeteman et al., J Natl Cancer 105:774­781, 2013) and best practices for web-based decision tools guided the development of the decision aid. The development process used semi-structured interviews and usability testing with key stakeholders, including a diverse group of multidisciplinary clinicians and a patient advocate. We developed onlineDeCISion.​org to include the following features that were rated as important by the stakeholders: (1) descriptions of each of the standard treatment options available; (2) visual projections of the likelihood of time-specific (10-year and lifetime) breast-preservation, recurrence, and survival outcomes; and (3) side-by-side comparisons of down-stream effects of each treatment choice. All clinicians reviewing the decision aid in usability testing were interested in using it in their clinical practice. The decision aid is available in a web-based format and is planned to be publicly available. To improve treatment decision making in patients with DCIS, we have developed a web-based decision aid onlineDeCISion.​org that conforms to best practices and that clinicians are interested in using in their clinics with patients to better inform treatment decisions.

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.

Patient-centered priorities for improving medication management and adherence.

OBJECTIVE: The Centers for Education and Research on Therapeutics convened a workshop to examine the scientific evidence on medication adherence interventions from the patient-centered perspective and to explore the potential of patient-centered medication management to improve chronic disease treatment. METHODS: Patients, providers, researchers, and other stakeholders (N = 28) identified and prioritized ideas for future research and practice. We analyzed stakeholder voting on priorities and reviewed themes in workshop discussions. RESULTS: Ten priority areas emerged. Three areas were highly rated by all stakeholder groups: creating tools and systems to facilitate and evaluate patient-centered medication management plans; developing training on patient-centered prescribing for providers; and increasing patients' knowledge about medication management. However, priorities differed across stakeholder groups. Notably, patients prioritized using peer support to improve medication management while researchers did not. CONCLUSION: Engaging multiple stakeholders in setting a patient-centered research agenda and broadening the scope of adherence interventions to include other aspects of medication management resulted in priorities outside the traditional scope of adherence research. PRACTICE IMPLICATIONS: Workshop participants recognized the potential benefits of patient-centered medication management but also identified many challenges to implementation that require additional research and innovation.

Childhood cancer survivor care: development of the Passport for Care.

Survivors of childhood cancer are at risk of long-term adverse effects and late effects of the disease and/or its treatment. In response to national recommendations to improve evidence-based follow-up care, a web-based support system for clinical decision making, the Passport for Care (PFC), was developed for use at the point of care to produce screening recommendations individualized to the survivor. To date, the PFC has been implemented in over half of the nearly 200 clinics affiliated with the Children's Oncology Group across the USA. Most clinician users report that the PFC has been integrated into clinic workflows, and that it fosters improved conversations with survivors about the potential late effects a survivor might experience and about the screening and/or behavioural interventions recommended to improve health status. Furthermore, clinicians using the PFC have indicated that they adhered more closely to follow-up care guidelines. Perspectives on the challenges encountered and lessons learned during the development and deployment of the PFC are reviewed and contrasted with other nationwide approaches to the provision of guidance on survivor follow-up care; furthermore, the implications for the care of childhood cancer survivors are discussed.

Differing levels of clinical evidence: exploring communication challenges in shared decision making. Introduction.

The near ubiquitous access to information is transforming the roles and relationships among clinical professionals, patients, and their care givers in nearly all aspects of healthcare. Informed patients engage their physicians in conversations about their conditions, options and the tradeoffs among diagnostic and therapeutic benefits and harms. The processes of care today increasingly and explicitly integrate exploration of patient values and preferences as patients and clinicians jointly engage in reaching decisions about care. The informed patient of today who can understand and use scientific information can participate as an equal partner with her clinician. Others with beliefs or educational, cultural, or literacy backgrounds that pose challenges to comprehending and applying evidence may face disenfranchisement. These barriers are significant enough, even in the face of certainty of evidence, that clinicians and investigators have given much thought to how best to engage all patients in decision making. However, barriers remain, as most decision making must occur in settings where uncertainty, if not considerable uncertainty, accompanies any statement of what we know. In September 2011, health care and health communication experts came together in Rockville, Maryland under the auspices of the Agency for Healthcare Research and Quality (AHRQ) John M. Eisenberg Center for Clinical Decisions and Communications Science Annual Meeting to explore the challenges of differing levels of evidence in promoting shared decisions and to propose strategies for going forward in addressing these challenges. Eight scholarly papers emerged, and with this introductory article, comprise this special issue of Medical Care Research and Review.

Passport for care: implementing the survivorship care plan.

Approximately 12,000 children in the United States are diagnosed with cancer each year, and roughly 75% of these patients become long-term survivors. The Passport for Care was developed to support these survivors and their health care providers.

The MERG Suite: Tools for discovering competencies and associated learning resources.

BACKGROUND: As the demands for competency-based education grow, the need for standards-based tools to allow for publishing and discovery of competency-based learning content is more pressing. This project focused on developing federated discovery services for competency-based medical e-learning content. METHODS: We built a tool suite for authoring and discovery of medical e-learning metadata. The end-user usability of the tool suite was evaluated through a web-based survey. RESULTS: The suite, implemented as an open-source system, was evaluated to identify areas for improvement. CONCLUSION: The MERG suite is a starting point for organizations implementing competency-based e-learning resources.

Role of a database-driven web site in the immediate disaster response and recovery of Academic Health Center: the Katrina experience.

In the wake of Hurricane Katrina's landfall on August 29, 2005, and the subsequent levee failures, operations of Tulane University School of Medicine became unsustainable. As New Orleans collapsed, faculty, students, residents, and staff were scattered nationwide. In response, four Texas medical schools created an alliance to assist Tulane in temporarily relocating operations to south Texas. Resuming operations in a three- to four-week time span required developing and implementing a coordinated communication plan in the face of widespread communication infrastructure disruptions. A keystone of the strategy involved rapidly creating a "recovery Web site" to provide essential information on immediate recovery plans, mechanisms for reestablishing communications with displaced persons, housing relocation options (over 200 students, faculty, and staff were relocated using Web site resources), classes and residency training, and other issues (e.g., financial services, counseling support) vitally important to affected individuals. The database-driven Web site was launched in four days on September 11, 2005, by modifying an existing system and completing new programming. Additional functions were added during the next week, and the site operated continuously until March 2006, providing about 890,000 pages of information in over 100,000 visitor sessions. The site proved essential in disseminating announcements, reestablishing communications among the Tulane family, and supporting relocation and recovery. This experience shows the importance of information technology in collaborative efforts of academic health centers in early disaster response and recovery, reinforcing recommendations published recently by the Association of Academic Health Centers and the National Academy of Sciences.

Accuracy of physician self-assessment compared with observed measures of competence: a systematic review.

CONTEXT: Core physician activities of lifelong learning, continuing medical education credit, relicensure, specialty recertification, and clinical competence are linked to the abilities of physicians to assess their own learning needs and choose educational activities that meet these needs. OBJECTIVE: To determine how accurately physicians self-assess compared with external observations of their competence. DATA SOURCES: The electronic databases MEDLINE (1966-July 2006), EMBASE (1980-July 2006), CINAHL (1982-July 2006), PsycINFO (1967-July 2006), the Research and Development Resource Base in CME (1978-July 2006), and proprietary search engines were searched using terms related to self-directed learning, self-assessment, and self-reflection. STUDY SELECTION: Studies were included if they compared physicians' self-rated assessments with external observations, used quantifiable and replicable measures, included a study population of at least 50% practicing physicians, residents, or similar health professionals, and were conducted in the United Kingdom, Canada, United States, Australia, or New Zealand. Studies were excluded if they were comparisons of self-reports, studies of medical students, assessed physician beliefs about patient status, described the development of self-assessment measures, or were self-assessment programs of specialty societies. Studies conducted in the context of an educational or quality improvement intervention were included only if comparative data were obtained before the intervention. DATA EXTRACTION: Study population, content area and self-assessment domain of the study, methods used to measure the self-assessment of study participants and those used to measure their competence or performance, existence and use of statistical tests, study outcomes, and explanatory comparative data were extracted. DATA SYNTHESIS: The search yielded 725 articles, of which 17 met all inclusion criteria. The studies included a wide range of domains, comparisons, measures, and methodological rigor. Of the 20 comparisons between self- and external assessment, 13 demonstrated little, no, or an inverse relationship and 7 demonstrated positive associations. A number of studies found the worst accuracy in self-assessment among physicians who were the least skilled and those who were the most confident. These results are consistent with those found in other professions. CONCLUSIONS: While suboptimal in quality, the preponderance of evidence suggests that physicians have a limited ability to accurately self-assess. The processes currently used to undertake professional development and evaluate competence may need to focus more on external assessment.

Comparison of the instructional efficacy of Internet-based CME with live interactive CME workshops: a randomized controlled trial.

CONTEXT: Despite evidence that a variety of continuing medical education (CME) techniques can foster physician behavioral change, there have been no randomized trials comparing performance outcomes for physicians participating in Internet-based CME with physicians participating in a live CME intervention using approaches documented to be effective. OBJECTIVE: To determine if Internet-based CME can produce changes comparable to those produced via live, small-group, interactive CME with respect to physician knowledge and behaviors that have an impact on patient care. DESIGN, SETTING, AND PARTICIPANTS: Randomized controlled trial conducted from August 2001 to July 2002. Participants were 97 primary care physicians drawn from 21 practice sites in Houston, Tex, including 7 community health centers and 14 private group practices. A control group of 18 physicians from these same sites received no intervention. INTERVENTIONS: Physicians were randomly assigned to an Internet-based CME intervention that could be completed in multiple sessions over 2 weeks, or to a single live, small-group, interactive CME workshop. Both incorporated similar multifaceted instructional approaches demonstrated to be effective in live settings. Content was based on the National Institutes of Health National Cholesterol Education Program--Adult Treatment Panel III guidelines. MAIN OUTCOME MEASURES: Knowledge was assessed immediately before the intervention, immediately after the intervention, and 12 weeks later. The percentage of high-risk patients who had appropriate lipid panel screening and pharmacotherapeutic treatment according to guidelines was documented with chart audits conducted over a 5-month period before intervention and a 5-month period after intervention. RESULTS: Both interventions produced similar and significant immediate and 12-week knowledge gains, representing large increases in percentage of items correct (pretest to posttest: 31.0% [95% confidence interval {CI}, 27.0%-35.0%]; pretest to 12 weeks: 36.4% [95% CI, 32.2%-40.6%]; P<.001 for all comparisons). Chart audits revealed high baseline screening rates in all study groups (> or =93%) with no significant postintervention change. However, the Internet-based intervention was associated with a significant increase in the percentage of high-risk patients treated with pharmacotherapeutics according to guidelines (preintervention, 85.3%; postintervention, 90.3%; P = .04). CONCLUSIONS: Appropriately designed, evidence-based online CME can produce objectively measured changes in behavior as well as sustained gains in knowledge that are comparable or superior to those realized from effective live activities.