The Transition of Patients with an ACE: Referral Pathway and Outcomes.

Abstract

Aims: Transition of paediatric patients is challenging. This study aimed to assess the transition pathway for patients who underwent an ACE procedure as a child and to understand ongoing support requirements.

Methods: A retrospective review was conducted of all patients on the Pelvic Floor Clinical Specialist Nurse's (PFCNS) database from a tertiary adult hospital. Patients receiving their ACE as an adult or patients who did not attend any outpatient appointments (OPAs) were excluded. Data was gathered on complications, additional procedures and outcomes.

Results: Sixty-three patients met the inclusion criteria. The median age at referral to an appropriate team was 18 years but the median age of referral to the PFCNS was 23 years. Only 7(11 %) were referred to the PFCNS by Paediatric Services. Patients experienced a variety of problems including change in equipment (n = 38, 60 %), change in washout regime (n = 28, 44 %), ACE leakage (n = 15, 24 %), stenosis (n = 15, 24 %) and ineffective washouts (n = 11, 17 %). Of those where data was available, there was a median of 7 PFCNS and 2.5 Colorectal Consultant (CC) OPAs per patient. Surgical intervention was common including procedures to the ACE (n = 8, 13 %), excision of ACE (n = 5, 7.9 %) manual evacuation (n = 5, 7.9 %) and formation of a stoma (n = 1%). 35 (56 %) were still using their ACE with a median time since transition of 11 years.

Conclusion: Patients with an ACE need considerable ongoing support yet few are appropriately transitioned. There needs to be a clear transition pathway for these patients to the PFCNS and if appropriate a CC.