QUALITY MEASURES IN TRANSITIONAL CARE FOR ADOLESCENTS AND YOUNG ADULTS WITH CONGENITAL HEART DISEASE

Due to the improvements in treatment concepts, today more than 90% of the children born with a congenital heart defect (CHD) can reach adulthood. Although often operated in childhood, these patients are not cured, but carry the risk for sequelae as well as residua on the long-term. Therefore, most patients born with CHD need regular cardiology follow-up. During childhood, these patients and their families are best treated and followed-up at pediatric hospitals, but when reaching adulthood, a transfer to adult care is advocated (1). Transfer can be defined as an event through which youth with chronic physical and medical conditions move their care from pediatric to an adult care environment (2). To ensure uninterrupted transfer from pediatric to adult congenital heart disease (ACHD) centers and prepare adolescents with CHD to take control of their lives and health, the implementation of formalized transition programs have been recommended (3). According to Meleis (4), transition can be described as “a passage or movement from one state, condition or place to another”, whereas transition programs need “to support the medical, psychosocial, and educational/vocational needs of adolescents as they move from the child-focused to the adult-focused healthcare system”(5). The aim of such programs is to optimize patients’ health and well-being, by educating them to take charge of their lives.

Although various guidelines and recommendations on the organization and content of such programs in CHD have emerged, little is known about common key factors for successful transition. Furthermore, it is not known to what extend the current recommendations are put into practice, and whether the centers have the necessary structures and process in place to offer structured transition programs. To detect differences between recommendations and daily practice, the use of quality indicators have been recommended (6). Quality indicators can be defined as “a measurable element of practice performance for which there is evidence or consensus that it can be used to assess the quality, and change the quality of care provided” (7).

Therefore the main outcome of this PhD project is to develop a set of valid and reliable quality indicators for transitional care in adolescent patients with CHD. To gain more insight on this matter, three studies are planned:

1) A descriptive cross-sectional study will be performed. Adult congenital heart centers with more than 200 CHD patients will be approached. Through a paper survey, information will be gathered about the institutions, the patient population, clinical activity, equipment and staff education, as well as the evidence on the implementation of a structured transition program.

2) The aforementioned centers with a structured transition program in place will be included in a further study. A mixed-methods approach will be applied. For the quantitative part, a questionnaire will be completed by the healthcare professional responsible for transition. The qualitative assessment will consist of both observations and interviews. With this procedure, a set of indicators for successful transition will be developed.

3) The set of indicators will be tested by an expert panel to receive a set of quality indicators for transition. These quality indicators will then be tested for their reliability and validity.

1.  Baumgartner H, Bonhoeffer P, De Groot NM, de Haan F, Deanfield JE, Galie N, et al. ESC Guidelines for the management of grown-up congenital heart disease. European Heart Journal. 2010;31(23):2915-57.

2.  Knauth Meadows A, Bosco V, Tong E, Fernandes S, Saidi A. Transition and transfer from pediatric to adult care of young adults with complex congenital heart disease. Curr Cardiol Rep. 2009;11(4):291-7.

3.  Sable C, Foster E, Uzark K, Bjornsen K, Canobbio MM, Connolly HM, et al. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation. 2011;123(13):1454-85.

4.  Meleis AI. Transitions Theory: Middle Range and Situation Specific Theories in Nursing Research and Practic. New York: Springer; 2010.

5.  Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for   Adolescent Medicine. J Adolesc Health. 1993;14(7):570-6.

6.  Goldman ML, Spaeth-Rublee B, Nowels AD, Ramanuj PP, Pincus HA. Quality Measures at the Interface of Behavioral Health and Primary Care. Current psychiatry reports. 2016;18(4):39.

7.  Lawrence M, Olesen F. Indicators of Quality in Health Care. European Journal of General Practice. 1997;3(3):103-8.