Implementation of a Pilot Study in Adolescent Health Care Transition Program for Chronic Granulomatous Disease: A Single Institution Experience

IF 2.5 4区医学 Q2 HEALTH POLICY & SERVICES

Journal of Pediatric Health Care Pub Date : 2025-05-01 DOI:10.1016/j.pedhc.2024.11.006

Patricia Driscoll RN, MSN, Beatriz E. Marciano MD, Alison Han MD, MS, Steven M. Holland MD, Maryland Pao MD, Christa S. Zerbe MD, MS

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引用次数: 0

Abstract

Background

The 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.

Methods

AYA 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.

Results

The 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.

Conclusion

Expansion of an educational transition program for AYA with primary immunodeficiencies (PIDs) might be useful.

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慢性肉芽肿性疾病青少年卫生保健过渡项目试点研究的实施：单一机构经验。

背景：对于患有慢性肉芽肿病（CGD）的青少年来说，过渡到成人医疗保健服务具有挑战性。这项试点研究旨在帮助患有慢性肉芽肿病的青少年学习医疗保健知识，并帮助他们发展生活技能，增强自我保健能力：方法：青少年和护理人员（供参与者使用）：该试点研究深受 CGD 参与者和护理人员的欢迎。未来，更大规模的群体可能会提供更多数据，对青少年群体的疗效和结果进行评论：结论：为患有原发性免疫缺陷症（PIDs）的青少年扩大教育过渡计划可能会有所帮助。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Pediatric Health Care NURSING-PEDIATRICS

CiteScore

3.40

自引率

10.70%

发文量

140

审稿时长

24 days

期刊介绍： The Journal of Pediatric Health Care, the official journal of the National Association of Pediatric Nurse Practitioners, provides scholarly clinical information and research regarding primary, acute and specialty health care for children of newborn age through young adulthood within a family-centered context. The Journal disseminates multidisciplinary perspectives on evidence-based practice and emerging policy, advocacy and educational issues that are of importance to all healthcare professionals caring for children and their families.