Spina bifida (SB), in which there is incomplete closing of the spine within 28 days of fetal development, is one of the most common birth defects. Currently more than 85% of children with SB survive into adulthood due to advances in medical treatment, but adolescents with SB have experienced difficulty in their transition to adulthood. 
Since 2010, many studies have been published on transition care programs for adolescents with SB, but the clinical guidelines are still limited. Above all, existing studies have presented results by focusing on the effects of the intervention, but it is difficult to find studies that systematically present the program development process. Thus, a developmental study is required to systematically demonstrate the development process of the transition care programs tailored to adolescents with SB. Considering the COVID-19 pandemic situation, it would be especially useful to develop an online-based transition care program. This study aimed to develop a transition care program with a systematic approach for adolescents with SB.

This study used intervention mapping (IM), which is a systematic approach to developing theory- and evidence-based and practice-based programs. The IM consists of six steps and has been used as a tool for the planning and development of health promotion interventions. The 6 steps are as follows: (1) logic model of the problem, (2) program objectives, (3) program design, (4) program production, (5) program implementation plan, and (6) evaluation plan. During program development, researchers could move back and forth between steps and each step is based on the previous steps. 
Step 1: To identify the problem of transition, we conducted a review of the theory and literature concerning transition intervention of adolescents with SB. We recruited a multidisciplinary panel of three young adults with SB (19-25 years), two pediatric urologists, two pediatric nurse practitioners, and a pediatric orthopedist for the development and implementation of the program. Upon discussion with the expert panel, the needs and contents of the transition care program were outlined. 
Step 2: We organized the program objectives to indicate which behaviors need to change and be achieved. Based on the results of the first step and, through the discussions of the research team, the program objectives and expected outcomes were specified. After this, a content validity index (CVI) was conducted by the multidisciplinary panel to evaluate the problems of transition, program objectives, expected outcomes, and rough contents of the program. The result of overall CVI was 0.96 and the item-CVI (I-CIV) ranged from 0.78-1.00. 
Step 3: The research team established a theoretical framework clearly in this step. The research framework and components of the program were established. Results from the integration of all information acquired from the previous steps were used to construct the transition education program. 
Step 4: The details of topics, scope order, and sequence of the transition care program were determined during this step to provide more effective delivery methods, performance, and implementation strategies selected based on the discussion of the researchers. The CVI of the transition care program was evaluated by 6 experts. The experts consisted of two pediatric urologists, a pediatric orthopedist, two child health nursing professors, and a pediatric nurse practitioner who had all directly cared for or had expertise in health for SB. The result of overall CVI was 0.99 and the I-CVI ranged from 0.83-1.00. We supplemented the contents of the program according to the opinions of the experts.
Step 5: We developed the plan for the application of specific methods in the program and discussed the barriers and facilitators for the program. For providing the education of the program, we asked for cooperation from experts (three pediatric nurse practitioners, and a social worker) and online educational videos for the transition care program were filmed with them.
Step 6: We made the evaluation plan clear by deciding the measurement methods for evaluating the effectiveness of the program.

Step 1: The five general problems affecting the transition of SB based on the literature review and panel discussion were: (1) health care (understanding SB, urological health, bowel management, medication, neurological health, orthopedic health, sexual health), (2) medical treatment-related issues, (3) daily and school life, (4) preparing for the future (career), (5) relationships with family members. 
Step 2:  The four program objectives were established in the step: Adolescents with SB (1) healthcare initiative, (2) redefining relationships with friends and family, (3) preparing for independence within the family, (4) exploring education courses and occupations.
Step 3: The framework of the transition care program was presented based on the life course model for SB (Fig 1).
Step 4: The online transition care program for adolescents with SB was developed as a six week program and takes 60-100 minutes for each session (Table 1). The intervention involved multiple teaching methods (including a lecture and discussion), as well as role-playing and group activities (sharing experiences and finding a solution). At the beginning of the program, adolescents and parents (caregivers) will establish the individual transition plans and goals through discussion with the research team.
Step 5: We plan to recruit participants by seeking cooperation with the largest SB clinic in South Korea and the Korean Spina Bifida Patients Association. The feasibility study would use a quasi-experimental pre-post design. According to the rule for a sample size of 12 per group for a pilot study, we will recruit 12 participants per group. For adolescents with SB, the eligibility criteria would include the following: (1) adolescents with SB aged 12-15 years, (2) ability to use the internet, (3) absence of cognitive impairments. An online animation was produced to explain the transition overview and will be shown to participants at the beginning of the program. 
Step 6: To measure the effectiveness of the program, we will measure the appropriate concepts based on the framework of the program; self-management / health domain (transition readiness and sexual health), personal and social relationships domain (social support including relationships with friends, teachers, and family), and education / employment domain (career readiness).

Despite an established consensus about the importance and need for a transition program for adolescents with SB, a fully detailed program and clinical guidelines for one is currently lacking. Moreover, information on the development process, content, and structure of a transition care program for SB is currently deficient. To address this need, we provided a detailed methodological description of the IM. The essential domains required for a transition care program for adolescents with SB are healthcare initiative, redefining the relationship with friends and family, preparing for independence within the family, and exploring education courses and occupations. These essential domains with a systematic approach should be considered in the development of a transition care program.

A systematic approach to developing a transition care program is necessary to ensure a successful transition for adolescents with SB. The transition care program which was developed with a systematic approach in the study could be effectively fundamental data in developing an intervention program which can guide the transition of adolescents with SB. The feasibility of this transition care program will be tested in a pilot study.