Transition of care in pediatric hereditary polyposis: the why, how and to whom

Area of Science:

• Gastroenterology
• Adolescent Medicine
• Healthcare Management

Background:

• Transition of care (TOC) is critical for youth with chronic conditions, particularly gastrointestinal hereditary polyposis syndromes (HPS).
• Poorly planned TOC for HPS can lead to decreased engagement in essential medical care, increasing cancer risk and mortality.
• HPS presents unique medical and psychosocial challenges that complicate the transition process.

Purpose of the Study:

• To review unique aspects of HPS relevant to TOC.
• To identify barriers and challenges associated with TOC for HPS patients.
• To outline current best practice recommendations for TOC in HPS.

Main Methods:

• A review of transition-focused practice guidelines for youth with chronic conditions.
• Literature review of major pediatric gastroenterology societies' recommendations for polyposis syndromes.
• Inclusion of conference abstracts and proceedings from PubMed and Medline.

Main Results:

• Effective TOC necessitates a structured, patient-centered, and individualized approach.
• Key components of effective TOC include early engagement, incremental education, and multidisciplinary collaboration.
• Current recommendations are based on expert opinion due to a lack of empirical evidence.

Conclusions:

• There is an urgent need for evidence-based strategies to improve TOC for HPS patients.
• Research should focus on enhancing continuity of care and mitigating socio-cultural and financial barriers.
• Addressing the complex psychosocial and medical needs of adolescents and young adults (AYA) with HPS is paramount.