Development of an evidence-based individualized transition plan for spina bifida

Area of Science:

• Pediatric healthcare
• Chronic illness management
• Transition of care

Background:

• Transitioning care for spina bifida (SB) patients from pediatric to adult settings needs improvement.
• Effective transition care enhances health outcomes and quality of life while reducing healthcare utilization.
• Components of optimal transition programs for SB are not well understood.

Purpose of the Study:

• To develop and evaluate an individualized transition plan (ITP) to optimize SB patient readiness for adult healthcare.
• The ITP aims to increase patient independence, autonomy, and personal responsibility for health tasks.
• To identify key components of a successful transition program for adolescents with SB.

Main Methods:

• Retrospective review of prospectively completed ITPs from June 2018 to May 2019.
• Collected demographic and disease characteristics of patients with SB.
• Analyzed and categorized specific goals within the ITPs.

Main Results:

• Thirty-two patients with an ITP were analyzed; 50% were male, with a mean age of 16.4 years.
• Common goals included maximizing education (career surveys, researching programs) and achieving bowel continence.
• Many patients achieved functional bowel programs, while others required adjustments or specialist consultations.

Conclusions:

• An evidence-based ITP was developed, focusing on education, bowel continence, and patient/family-centered goals.
• The ITP concept is adaptable for transition of care in various chronic childhood illnesses.
• This approach supports a smoother transition to adult healthcare for individuals with spina bifida.