Gastroenterology services inadequate for CF patients

By Siobhan Calafiore

29 Jan 2024

Delivery of gastroenterology services for cystic fibrosis requires an overhaul, with the current approach varied and often isolated from CF teams, a survey suggests.

Gastroenterologists, CF clinicians (respiratory consultants, dieticians and clinical nurse consultants) and patients or their carers from Australia and New Zealand were surveyed online about CF gastroenterology services in their region.

Responses from 156 health professionals (including 54 gastroenterologists) and 172 patients or carers indicated that gastroenterology services for CF patients were predominantly publicly funded and delivered outside of CF clinic time.

Most Australian CF clinicians reported that they had a gastroenterologist based at their hospital (90%). The remainder either had a visiting gastroenterologist at the hospital or referred patients to another hospital or to a private gastroenterologist.

Half of patients/carers were not familiar with their hospital’s gastroenterologist.

The three most commonly reported reasons a patient consulted a gastroenterologist were for abdominal pain (55%), constipation (39%), and for the management of exocrine pancreatic insufficiency (38%).

Gastroenterologists said that while they rated the importance of access to gastroenterology specialist care for patients with CF as high, they were largely not integrated into the CF team and lacked training opportunities.

The researchers said 32% of Australian and 64% of New Zealand gastroenterologists reported that they had never been invited to attend a CF clinic, which was “perhaps a missed opportunity” for a patient-centric approach to care.

Common barriers to further specialisation in CF were a lack of time (55%), not enough training opportunities (38%), not enough clinical exposure to CF (41%) and a lack of funding for CF gastroenterology research (41%), responses showed.

Other factors reported in the free text section included not enough work, not seen as a priority area, limited hospitals with CF centres, lack of funding for CF gastroenterology services and a lack of support for gastroenterology in general.

A course or conference exclusively on gastroenterology issues in CF was the most popular suggested model for further training/education among specialists (48%).

The researchers from Sydney Children’s Hospital and UNSW said none of the groups interviewed deemed the current service model as adequate, which opened up the opportunity for transformation in the field, such as the formation of dedicated CF gastroenterology clinics, multidisciplinary teams and further education.

“It is clear that there are poor training opportunities for CF gastroenterologists, poor engagement with existing education events such as CF conferences and lack of participation in CF GI research. This raises concerns for the future of CF gastroenterologists and the expertise needed to manage the next generation of individuals with CF,” wrote the authors in Frontiers in Pediatrics [link here].

“Ideally the data from this study will invigorate the need for promotion and integration of gastroenterology services that would ultimately benefit the whole CF community.”

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