ArticleJournal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners
Implementation of a Pilot Study in Adolescent Health Care Transition Program for Chronic Granulomatous Disease: A Single Institution Experience.
Article in Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Authors and funding
6 authors.
Funding
Abstract
backgroundThe transition to adult health care is challenging for adolescents and young adults (AYA) with Chronic Granulomatous Disease (CGD). This pilot study aimed to facilitate the learning of AYA with CGD about their health care and to aid in the development of life skills to enhance self-care.
methodsAYA and caregivers (for participants <18 years of age) completed an adapted Transition Readiness Assessment. Educational sessions were held both in person and via telehealth and included virtual meetings with subject matter experts or a designated program mentor. Twenty-five participants were invited, 13 entered the pilot and 8 completed the transition readiness assessment.
resultsThe pilot study was well-received by CGD participants and caregivers. In the future, a larger cohort may provide more data to comment on efficacy and outcome in the AYA population.
conclusionExpansion of an educational transition program for AYA with primary immunodeficiencies (PIDs) might be useful.
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