Abstract
Adolescents with spina bifida (SB) face challenges in their transition to adulthood due to intensive medical regimens and delayed development of independence. Despite an increasing interest in the transition of adolescents with SB to adulthood, the clinical evidence of transition care remains limited, and existing studies have focused on the effects of intervention programs. This study aims to describe the process of systematically developing an online-based transition care program for adolescents with SB using the intervention mapping (IM) protocol. IM consists of six steps: (1) logic model of the problem; (2) program objectives; (3) program design; (4) program production; (5) plan to implement the program; (6) plan for evaluation. At first, five problems faced during the transition were identified, based on which four program objectives and six program strategies were established. The online transition care program for adolescents with SB was developed as a six-week program. The main strength of this program is that it reflects the diverse perspectives of adults with SB and health care professionals and is easy to apply because it is online. We aim to further validate the feasibility of this transitional care program to evaluate its effect based on our evaluation plan.
Highlights
Spina bifida (SB) is one of the most common congenital malformations, known as neural tube defects, caused by a failure in the closure of the vertebrae during the early stage of pregnancy [1]
Based on the systematic review [25] and need assessment [3] on the transition program, the needs were identified for an intervention that aims to support the transition process among adolescents with SB
Through the systematic review on transition programs for adolescents with SB [25], we found that the characteristics of participants and intervention strategies were the main components of the transition care program
Summary
Spina bifida (SB) is one of the most common congenital malformations, known as neural tube defects, caused by a failure in the closure of the vertebrae during the early stage of pregnancy [1]. Before 1960, the survival rate for patients with SB was about 10–12%; owing to recent advancements in health care, over 85% of the children with SB are expected to survive to adulthood [2]. As SB is a common congenital malformation with high survival until adulthood, it must be approached as a chronic condition [3,4]. From a health care perspective, the transition is the purposeful, planned passage of adolescents with chronic conditions from child-centered to adult-oriented health care systems [6]. Adolescence is a challenging time of physical, psychological, and social change [7]
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