Healthcare needs of adolescents with congenital heart disease transitioning into adulthood: a Delphi survey of patients, parents, and healthcare providers

Abstract

Background: The increasing survival of children with congenital heart disease (CHD) challenges healthcare systems regarding how to manage the many health needs of patients undergoing transitional care. A comprehensive understanding of the perspectives of patients, parents, and healthcare providers is required. Objective: This study systematically identified the healthcare needs of adolescents with CHD transitioning into young adults by collecting the perspectives of patients, parents, and healthcare providers. Methods: A sample of CHD patients (n = 29), parents of children with CHD (n = 29), and healthcare providers (n = 16) completed the two-round Delphi study, and 64 healthcare needs were identified. The central tendency and the level of dispersion were computed in order to establish a consensus. Results: A consensus was reached on 25 healthcare needs including health, family, individual, interpersonal interaction, and policy dimensions, which were classified as important with a moderate to high level of agreement by all three groups. The three groups were strongly agreed that "encouraging the patient to learn health self-management" and "cultivating a positive attitude toward the illness" were very important. The opinions of the three groups differed significantly on 12 needs (p < 0.05) related to health, family, and policy dimensions. Conclusion: A consensus was reached on the needs that were identified as being potentially valid measures of the healthcare needs of adolescents with CHD transitioning into young adults. The identified needs can serve as the basis for establishing a transitional health passport and developing a clinical intervention for adolescents with CHD transitioning into young adults.

Initial validation of a healthcare needs scale for young people with congenital heart disease

“…The Healthcare Needs Scale for Youth with CHD (HNS‐CHD) used in this study originated from the findings of the authors’ previous Delphi study regarding the healthcare needs of adolescents with CHD during transition to adulthood (Chen et al., ). The face and content validity of HNS‐CHD has been established by a consensus on 25 healthcare needs reached by youth with CHD, parents and healthcare providers.…”

“…In the present study, the HNS‐CHD consisted of 25 items regarding the importance level of needs perceived by the participants rated on a 5‐point Likert scale, ranging from 1 (very unimportant)—5 (very important). The HNS‐CHD measured five domains of healthcare needs that youth with CHD may identify: health, family, individual, interpersonal and policy needs (Chen et al., ). A high score indicated that a need was crucial, whereas a low score indicated a less important need.…”

“…According to the Delphi survey by Chen et al. () a consensus involving the perspectives of patients, parents and healthcare providers has been reached on the healthcare needs of adolescents with CHD transitioning into adulthood regarding health, family, individual interpersonal interaction and policy dimensions. The identified needs based on these comprehensive perspectives can serve as the basis for establishing the reliability and validity of a self‐report instrument for use with youth with CHD.…”

The life experience of parents of Congenital Heart Disease adolescents: A meta-synthesis

“…Arch Nurs Pract Care 3(2): 031-037. DOI: http://dx.doi.org/10.17352/anpc.000022 from childhood to adulthood in patients with CHD, in order to develop the purposeful transition care models, which are aimed to provide self-management and to satisfy the medical, psychosocial, educational, and employment needs of CHD adolescents [1,8].…”

“…With a prevalence of 9.1 for 1000 live births [1], the CHD are the leading causes of birth defectsassociated morbidity, mortality, and medical expenditures [2].…”