The perceived benefit of return of individual research results (IRRs) in accordance to participants' preferences in genomic biobank research is unclear. We developed an online preference-setting tool for return of IRRs based on the preventability and severity of a condition, which included an opt-out option for IRRs for mental illness, developmental disorders, childhood-onset degenerative conditions, and adult-onset conditions. Parents of patients <18 years of age at Boston Children's Hospital were randomized to the hypothetical scenario that their child was enrolled in one of four biobanks with different policies for IRRs to receive (a) "None," (b) "All," (c) "Binary"-choice to receive all or none, and (d) "Granular"-use the preference-setting tool to choose categories of IRRs. Parents were given a hypothetical IRRs report for their child. The survey was sent to 11,391 parents and completed by 2,718. The Granular group was the most satisfied with the process, biobank, and hypothetical IRRs received. The None group was least satisfied and least likely to agree that the biobank was beneficial (p < .001). The response to the statement that the biobank was harmful was not different between groups. Our data suggest that the ability to designate preferences leads to greater satisfaction and may increase biobank participation.

Health care transition (HCT) from pediatric to adult-focused systems is a key milestone for youth. Developing self-care skills and HCT planning are key elements. In a survey at 4 pediatric specialty clinics to 79 youth aged 16 to 25 years and 52 parents, skill-based HCT readiness was assessed using the Transition Readiness Assessment Questionnaire (TRAQ). Multivariable logistic regression evaluated the association between TRAQ scores and self-care beliefs. In all, 70% of youth and 67% of parents believed that they/their child could manage their care. Only 38% of youth and 53% of parents reported thinking about HCT; only 18% of youth and 27% of parents reported having a HCT plan. Youth with higher TRAQ scores were more likely to believe they could manage their care, controlling for age and gender (adjusted odds ratio = 4.0, 95% confidence interval = 1.7-9.5). Transition readiness skills are associated with self-care beliefs. However, a mismatch exists between high reported self-care beliefs and low levels of transition planning.

BACKGROUND AND OBJECTIVE: Twenty percent of US youth have a chronic medical condition and many attend college. Guidelines for transition from pediatric to adult care do not address college health services, and little is known about their capacity to identify, support, and provide care for these youth. The objective of this study was to describe college health center policies, practices, and resources for youth with chronic medical conditions (YCMC). METHODS: Survey of medical directors from health centers of a representative sample of 200 4-year US colleges with ≥ 400 enrolled undergraduate students. Patterns of identification, management, and support for youth with a general chronic medical condition and with asthma, diabetes, and depression, were investigated; χ(2) and Fisher exact tests were used to ascertain differences by institutional demographics. RESULTS: Directors at 153 institutions completed the survey (76.5% response rate). Overall, 42% of schools had no system to identify YCMC. However, almost a third (31%) did identify and add to a registry of incoming YCMC on review of medical history, more likely in private (P < .001) and small (<5000 students, P = .002) colleges; 24% of health centers contacted YCMC to check-in/make initial appointments. Most institutions could manage asthma and depression (83% and 69%, respectively); 51% could manage diabetes on campus. CONCLUSIONS: Relatively few US colleges have health systems to identify and contact YCMC, although many centers have capacity to provide primary care and management of some conditions. Guidelines for transition should address policy and practices for pediatricians and colleges to enhance comanagement of affected youth.

BACKGROUND: Studies have shown that young adults with chronic diseases, including inflammatory bowel disease (IBD), experience greater difficulty during the transition to college, reaching lower levels of educational attainment and reporting greater levels of perceived stress than their otherwise-healthy peers. We performed a qualitative study to better understand how underlying illness shapes the college experience for patients with IBD and how the college experience, in turn, impacts disease management. METHODS: Fifteen college students with IBD were recruited from the Boston Children's Hospital Center for IBD. We conducted an approximately 1 hour semistructured qualitative interview with each participant, and the interviews were thematically analyzed after an iterative and inductive process. RESULTS: Four primary themes were identified: (1) The transition experience of college students with IBD is shaped by their health status, perceived readiness, and preparedness, (2) Elements of the college environment pose specific challenges to young adults with IBD that require adaptive strategies, (3) College students with IBD integrate their underlying illness with their individual and social identity, and (4) College students navigate health management by conceptualizing themselves, their families, and providers as serving particular roles. CONCLUSIONS: For young adults with IBD, college is a proving ground for demonstrating self-care and disease management practices. Future initiatives aimed at this population should recognize the evolving roles of patients, parents, and providers in disease management. Increased attention should also be paid to the promotion of patient's self-management and the unique challenges of the structural and psychosocial college environment.

BACKGROUND AND OBJECTIVE: Malfunctions or poor usability of devices measuring glucose or delivering insulin are reportable to the FDA. Manufacturers submit 99.9% of these reports. We test online social networks as a complementary source to traditional FDA reporting of device-related adverse events. METHODS: Participatory surveillance of members of a non-profit online social network, TuDiabetes.org, from October 2011 to September 2012. Subjects were volunteers from a group within TuDiabetes, actively engaged online in participatory surveillance. They used the free TuAnalyze app, a privacy-preserving method to report detailed clinical information, available through the network. Network members were polled about finger-stick blood glucose monitors, continuous glucose monitors, and insulin delivery devices, including insulin pumps and insulin pens. RESULTS: Of 549 participants, 75 reported device-related adverse events, nearly half (48.0%) requiring intervention from another person to manage the event. Only three (4.0%) of these were reported by participants to the FDA. All TuAnalyze reports contained outcome information compared with 22% of reports to the FDA. Hypoglycemia and hyperglycemia were experienced by 48.0% and 49.3% of participants, respectively. DISCUSSION: Members of an online community readily engaged in participatory surveillance. While polling distributed online populations does not yield generalizable, denominator-based rates, this approach can characterize risk within online communities using a bidirectional communication channel that enables reach-back and intervention. CONCLUSIONS: Engagement of distributed communities in social networks is a viable complementary approach to traditional public health surveillance for adverse events related to medical devices.

Electronic health records (EHRs) and social media have the potential to enrich public health surveillance of diabetes. Clinical and patient-facing data sources for diabetes surveillance are needed given its profound public health impact, opportunity for primary and secondary prevention, persistent disparities, and requirement for self-management. Initiatives to employ data from EHRs and social media for diabetes surveillance are in their infancy. With their transformative potential come practical limitations and ethical considerations. We explore applications of EHR and social media for diabetes surveillance, limitations to approaches, and steps for moving forward in this partnership between patients, health systems, and public health.

BACKGROUND: The aim of this study was to ascertain parental preferences for the return of genetic research results on themselves and their children and their choices for genetic research results to receive. METHODS: A mail survey was sent to 6,874 families seen at Boston Children's Hospital. The survey included questions assessing the respondents' preferences regarding the types of result they wanted to receive on themselves and their children. RESULTS: Most of the 1,060 respondents 'probably' or 'definitely' wanted to receive genetic research results about themselves (84.6%) and their children (88.0%). Among those who wanted to receive results, 83.4% wanted to receive all research results for themselves and 87.8% for their children. When questions about specific types of research results were combined into a composite measure, fewer respondents chose to receive all results for themselves (53.5%) and for their children (56.9%). CONCLUSION: Although most parents report a desire to receive all research results on a general question, almost half chose to receive only a subset of research results when presented with specific types of research results. Our findings suggest that participants might not understand the implications of their choice of individual research results to receive unless faced with specific types of results.

Adolescents are developmentally sensitive to pathways that influence alcohol and other drug (AOD) use. In the absence of guidance, their routine engagement with social media may add a further layer of risk. There are several potential mechanisms for social media use to influence AOD risk, including exposure to peer portrayals of AOD use, socially amplified advertising, misinformation, and predatory marketing against a backdrop of lax regulatory systems and privacy controls. Here the authors summarize the influences of the social media world and suggest how pediatricians in everyday practice can alert youth and their parents to these risks to foster conversation, awareness, and harm reduction.

PURPOSE OF REVIEW: The purpose of the present article is to review recent national guidelines regarding healthcare transition (HCT) planning for adolescents with special healthcare needs (SHCN) and to describe practical tools for use by the primary care pediatrician to implement these guidelines. RECENT FINDINGS: Approximately one in five adolescents in the United States has SHCN. Achieving successful transitions from child-oriented to adult-oriented healthcare for these patients can be difficult. Despite numerous barriers to HCT, innovations in healthcare delivery, including the patient-centered medical home and accountable care payment structures, may help overcome challenges. The American Academy of Pediatrics, American Academy of Family Physicians, and the American College of Physicians have provided explicit practice-level guidance for supporting HCT. The National Healthcare Transition Center developed the Six Core Elements of Healthcare Transition, recommending six detailed action steps for transitions from pediatric settings. Steps reflect guidelines and, along with novel patient-centered information technologies, may help support individuals and families navigating complex transitions. SUMMARY: It is time to integrate transition planning into the medical home. Further evidence is needed to identify transition strategies that improve outcomes. Although innovations in care delivery, payment structures, and information technologies may support HCT, pediatricians can and should implement already available and recommended transition steps.

IMPORTANCE: Surveillance systems for elucidating the burden of hypoglycemia are limited. OBJECTIVE: To quantify experiences of hypoglycemia and related harms, members of an international online diabetes social network with insulin-dependent diabetes mellitus were polled through a software application ("app"). Aggregate results were returned to participants through network channels. DESIGN: The study period was from March 2011 through April 2012, during which time retrospective reports about experiences with hypoglycemia and related harms were collected from participants using the app. SETTING: The study was undertaken within the TuDiabetes.org international online diabetes social network. PARTICIPANTS: Eligibility criteria included TuDiabetes membership, age 13 years or older, a self-reported diagnosis of diabetes mellitus, ability to read and write English, and Internet access. Of 2827 app users, 687 (response rate, 24.3%) opted in to the volunteer sample. MAIN OUTCOME MEASURES: Primary outcomes included the following: frequency of "going low" (having a low glucose value in the past 2 weeks) and episodes of severe hypoglycemia (in the past 12 months), and, for respondents reporting recent and/or severe hypoglycemia, lifetime experience of vehicle crashes or severe medical injury, daily debilitating worry, and withdrawal from driving, exercise, sex, and going outside of the home to avoid hypoglycemia and consequences. Secondary outcomes included measures of research engagement. RESULTS: Of 613 respondents (24.3% of app users), 49.1% reported more than 4 episodes of "going low" in the past 2 weeks and 29.2% reported 1 or more severe low in the past year; 16.6% reported both more than 4 recent low episodes and 1 or more severe event in the past year. Harms were common, including daily debilitating worry (45.8%), vehicle crash or injury (15.0%), and withdrawal from exercise, driving, leaving home, and having sex (54.0%, 37.4%, 24.8%, and 22.7%, respectively). Of all respondents, 54.2% reported multiple harms, the risks for which were highest (73.7%) among respondents with a past-year severe event (odds ratio, 2.39; 95% CI, 1.60-3.58; P < .001 controlling for frequent recent low episodes and demographic and disease factors). Engagement was high, with 96.6% of the sample permitting recontact for research and 31.7% posting personal study data on their app profile page; 40.5% of 2825 unique page views of research-related materials published on the community site involved views of returned research results. CONCLUSIONS AND RELEVANCE: Participatory surveillance of hypoglycemia in an online diabetes social network enables characterization of patient-centered harms in a community sample and bidirectional communication with affected persons, augmenting traditional surveillance.