Strengths and limitations of healthcare transition programs for patients with spina bifida: a systematic review.

BACKGROUND

Due to the complex needs of patients with spina bifida, many pediatric clinics have adopted a multidisciplinary approach, which allows the patient to see multiple specialists in one setting. However, patients with spina bifida require ongoing care throughout their lifetime, and many patients experience interruptions in care when they transition to adulthood; therefore, many centers have also begun to develop programs to streamline the transition process. The goal of this review is to summarize the existing healthcare transition programs for patients with spina bifida that have been described in the literature.

METHODS

A systematic review was conducted using PubMed, Scopus, and SpringerLink. Articles were screened first by title and abstract, followed by a full-text review. The following data were extracted from included articles: number of respondents, type of study, intervention, the type of survey (if applicable), and outcomes. The Triple Aim framework (population health, experience of care, and utilization and cost) was used to assess outcomes.

RESULTS

Overall, 1,288 articles were screened and 15 were included in this review. 13 assessed individual patients, while 2 performed a clinic/program-level analysis. The included studies had a mean of 52 subjects per study (range 13-162 subjects). 14 studies evaluated population health outcomes, 13 evaluated the experience of care, and 7 evaluated utilization and cost outcomes. 12 studies utilized a survey or interview-based methodology, while the other 3 utilized quantitative data obtained through a retrospective chart review. Most transition programs have shown improved independence and self-management, but require more discussion regarding mental health, communication with adult care providers, community resources and insurance, and transportation. Future efforts should focus on psychosocial and practical aspects of care.