Introduction Patients with stable coeliac disease in Croydon are discharged back to their General Practitioners with a yearly follow-up protocol. We conducted a patient survey to evaluate its uptake and to ascertain the views of patients about their follow-up.
Methods An online survey was designed and sent to all patients registered with Croydon group of Coeliac UK and had an e-mail address in February 2015. A reminder was sent to all members after 6 weeks. The responses were computed in May 2015, presented to Croydon Coeliac UK members and sent to the CCG. Paper copies were also given out at a group meeting.
Results Of the 233 registered members, the survey questionnaire was sent electronically to about 200 patients at 9 post codes in Croydon. There were 101 responses of which 82 were complete. 94% responders were over 18 years of age. 60% patients never received an appointment from their GP for an annual follow-up (n = 84). Only 50% patients had a follow-up in the previous year. Most recent review was conducted by GP in 37% cases, GP practice nurse in 8%, Deititian in 20%, local gastroenterologist 32% (n = 76). Overall 80% patients had seen a dietitian (n = 85). 70% (n = 87) had been offered DEXA scan for bone mineral density. About 65% had a blood test in the last year (n = 87). Calcium, haematinics, vitamin D, coeliac antibodies were checked in about 40–50% patients (n = 34) with 66% receiving feedback on the results (n = 47). Apart from enquiry about gluten free diet in 78% cases, all other questions relating to coeliac disease were discussed in less than 40% cases (n = 60). Vaccinations were discussed in only 8% cases and membership of Coeliac UK in 18%. Only 43% of patients were offered a yearly follow-up while 7% were referred to the hospital gastroenterologist (n = 57).
When asked about the expectations of patients, 90% wanted an annual follow-up (n = 78) with 37% preferring to see their GP, 9% GP practice nurse, 21% dietitians, 27% gastroenterologist (n = 75). Of the 77 respondents, 46% said they would be happy to attend dietitian led group sessions, 38% preferred not to while 17% had no opinion.
Conclusion The annual follow-up of patients with coeliac disease in the community is patchy. The quality of this appointment is also inadequate. If these results can be replicated more widely, there may be a place for specialist community clinics with links between GP, dietitians and local gastroenterologists.
Disclosure of Interest None Declared