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.