Perceptions of Transition from Pediatric to Adult Care for Youth with Chronic and Rare Diseases: A Participatory Health Research Project

• Published in: Pediatrics (Evanston) 2019-08, Vol.144 (2_MeetingAbstract), p.236-236
• Main Authors: Tsang, Vivian WL, El-Sayegh, Lydia, Thompson, Charles
• Format: Article
• Language: English
• Subjects: Adolescents; Children; Children & youth; Guidelines; Hospitals; Medical personnel; Medical research; Patients; Pediatrics; Perceptions; Physicians; Protocol (computers); Rare diseases; Researchers; Trends; Workers
• ISSN: 0031-4005; 1098-4275
• DOI: 10.1542/peds.144.2MA3.236

Background: Children with chronic and rare disease have challenges in transition into adult care. Purpose: This participatory health research project encouraged youth in the International Children's Advisory Network (ICAN) to get involved in research and health advocacy. The goal of this project is to understand physician perceptions of current protocols for the transition of pediatric patients with a history of childhood disease into adult care and expand future research to include the perceptions of youth in healthcare decisions. Methods: 1) A survey to investigate physician perception on existing gaps in the transition of care in children's hospitals around the world, and to identify the barriers and improvements that can be made, was administered by youth to 100 physicians at the 2017 American Academy of Pediatrics National Conference & Exhibition. 2) 15 semi-structured, standardized interviews of medical professionals who work with adolescents were created and administered by youth to investigate adolescent transitions in 8 cities across Canada and the United States. Results: 20 youth aged 15-22 in 8 cities across Canada and the United States participated as youth researchers in this project. 65% of youth were past or current patients. In Phase 1, 65% of respondents were medical providers (MD, DO), 17.17% were students/residents/fellows, and 6.06% were researchers (PhD, MS/MA), (Table 1). 57% rated current processes of transitioning from pediatric to adult care mean 5 out of 10 on a 10 item scale with no participants rating 9 or 10. The top obstacle was a lack of communication between pediatric and adult doctors (68%), The top ranked strategy for improvement was to provide formal transition guidelines (68%). In Phase 2, 66.67% of respondents were pediatricians, with the remaining as clinical social workers or healthcare managers. 60% of interviewees were in public healthcare and 40% were in private healthcare. Trends of unmet needs were noted in the transition process as identified by healthcare personnel. Specifically, system-specific concerns include lack of insurance coverage, lack of physicians, and lack of funding for transition clinics. Concerns regarding communication between youth or parents and physicians as well as in inter-physician relationships were associated with lack of youth maturity and age when transition processes were initiated. Creation of general transition guidelines or formalized transition models (66.67%), tools to navigate i