Transition and transfer of adolescents and young adults with pediatric onset chronic disease: The patient and parent perspective

Issue title: Transition

Article type: Research Article

Authors: Fernandes, Susan M.^; | O'Sullivan-Oliveira, Joanne | Landzberg, Michael J. | Khairy, Paul | Melvin, Patrice | Sawicki, Gregory S. | Ziniel, Sonja | Kenney, Lisa B. | Garvey, Katharine C. | Sobota, Amy | O'Brien, Rebecca | Nigrovic, Peter A. | Sharma, Niraj | Fishman, Laurie N.

Affiliations: Lucile Packard Children's Hospital at Stanford, Palo Alto, CA, USA | Department of Cardiology, Boston Children's Hospital, Boston, MA, USA | Department of Surgery/Nursing, Boston Children's Hospital, Division of Nursing, Curry College, Boston, MA, USA | Department of Medicine, Montreal Heart Institute, Montreal, Canada | Center for Patient Safety and Quality Research, Boston Children's Hospital, Boston, MA, USA | Department of Medicine, Division of Pulmonary and Respiratory Diseases, Boston Children's Hospital, Boston, MA, USA | Dana-Farber Cancer Institute and Department of Medicine, Division of Hematology and Oncology, Boston Children's Hospital, Boston, MA, USA | Department of Medicine, Division of Endocrinology, Boston Children's Hospital, Boston, MA, USA | Department of Medicine, Division of Hematology and Oncology, Boston Medical Center, Boston, MA, USA | Department of Adolescent Medicine, Boston Children's Hospital, Boston, MA, USA | Department of Medicine, Division of Immunology, Boston Children's Hospital and Center for Adults with Pediatric Rheumatic Illness, Brigham and Women's Hospital, Boston, MA, USA | Department of Medicine, Division of General Medicine, Brigham and Women's Hospital and Department of Medicine, Division of Pediatrics, Boston Children's Hospital, Boston, MA, USA | Department of Medicine, Division of Gastroenterology, Boston Children's Hospital, Boston, MA, USA

Note: [] Corresponding author: Susan M. Fernandes, LPD, PA-C, Lucile Packard Children's Hospital at Stanford. 750 Welch Road, Suite 321. Palo Alto, CA 94304, USA. Tel.: +1 650 724 5554; Fax: +1 650 723 8115; E-mail: [email protected]

Abstract: PURPOSE: To determine patients' and parents' perceptions regarding the delivery of transition education and perceived barriers to transfer to adult oriented care. METHODS: A self-report survey was administered to a convenience sample of patients (16–25 years old) with various childhood onset chronic diseases. A similar survey was administered to their parents/guardians. RESULTS: A total of 155 patients and 104 parents participated in the study. The mean age of patients was 18.8 ± 2.3 years; 57% were female. Although most patients and parents reported receiving information and training about their medical condition, significant gaps in other aspects of transition education were identified. These included stated deficiencies in education regarding unprotected intercourse, health of future offspring, birth control, pregnancy, illicit drug use, and future career or vocation counseling. Commonly cited barriers to transfer were emotional attachments and lack of adult medicine specialty providers; however, the majority anticipated being ready to transfer to adult oriented care by age 25 years. CONCLUSION: There are significant gaps in the delivery of transition education as perceived by patients and their parents. Standardization of transition education may help ensure that patients acquire the knowledge and skills for health care self-management in adulthood and successful transfer to adult oriented care.

Keywords: Health care transition, health care self-management, pediatric onset chronic disease

DOI: 10.3233/PRM-140269

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 7, no. 1, pp. 43-51, 2014