The development of a pathway to gastrostomy removal in childrenwith cystic fibrosis

Abstract

Background In the era of Cystic Fibrosis (CF) Transmembrane (CFTR) modulator therapy and the increased improvement in nutritional status across the cohort who have been eligible, numbers of individuals requesting closure of their gastrostomy are increasing. After many years of relying on the device, paediatric patients are requesting swift removal, requiring collaboration between medical and surgical teams and the development of a best practice nurse-led protocol in an environment where such procedures are given a low priority on a long surgical waiting list. Objectives To develop a pathway to a fast removal of gastrostomy devices for patients with CF no longer requiring their device. Methods A combination of chart reviews and patient interviews were used to establish the current process. Engagement of specialists across medical and surgical divisions was also used to develop best practice timely removal strategies. Results In early 2021 therewere 442 patients cared for by the Queensland Children’s Hospital (QCH) Cystic Fibrosis Centre. Of these, 31 patients (7%) had a gastrostomy in place for use in supplementary nutrition. By 2023, 6 patients had their devices removed. Both primary and natural closure methods were identified, alongside barriers and facilitators in both methods. A plan of the project and case histories will be presented. Conclusion The project revealed that a positive contributing factor to achieving closure in a timely manner was the involvement of nursing staff. Alongside surgical consultation nurses were able to remove and monitor natural closure. It is expected that with ongoing use of CFTR modulator therapy increasing numbers of patients will request gastrostomy closure. Therefore, the development of this nurse-led pathway will become paramount in improving the patient experience within an economical framework of the utilisation if existing healthcare resources.