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The Transition of Patients with an ACE: Referral Pathway and Outcomes
Anna Cv Harris1, Yvette Perston2, Anil Bagul2
1Birmingham Children's Hospital, Steelhouse Lane, Birmingham, B4 6NH, UK; Queen Elizabeth Hospital, Mindelsohn Way, Birmingham, B15 2WB, UK.
Insights
Patients needing an Antegrade Continence Enema (ACE) procedure require significant lifelong support. This study highlights the challenges in transitioning these patients, emphasizing the need for improved pathways to specialized care.
Area of Science:
- Pediatric surgery
- Gastroenterology
- Urology
Background:
- Transitioning pediatric patients with Antegrade Continence Enema (ACE) procedures to adult care presents unique challenges.
- Ongoing support is crucial for managing complications and ensuring quality of life.
Purpose of the Study:
- To evaluate the existing transition pathway for pediatric patients who underwent an ACE procedure.
- To identify the ongoing support needs of these patients in adult care.
Main Methods:
- Retrospective review of patients on a tertiary adult hospital's Pelvic Floor Clinical Specialist Nurse (PFCNS) database.
- Exclusion of patients who received ACE as adults or had no outpatient appointments.
- Data collection on complications, procedures, and outcomes.
Main Results:
- Sixty-three patients met inclusion criteria; median age at referral to PFCNS was 23 years.
- Common issues included equipment changes (60%), washout regime changes (44%), and ACE leakage (24%).
- Many patients required surgical intervention (13%) or continued ACE use (56%) long-term.
Conclusions:
- Patients with an ACE require substantial ongoing support, but few experience a smooth transition.
- A defined transition pathway to specialized services like the PFCNS and Colorectal Consultant (CC) is essential.
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.
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