The management of cystic fibrosis

CF patients' experience of an adult ward following transition – an on-line survey

CF patients’ experience of an adult ward following transition − an on-line survey A. Cunha1, D. Bilton1, S. Madge1. 1Royal Brompton and Harefield Foundation Trust, Respiratory Medicine, London, United Kingdom Background: Transition from paediatric to adult care has become increasingly important as children with chronic illness survive into adulthood. Over half of the UK CF patients are adults. Aim: Describe the experiences of ward admissions in young adults transitioned to an adult centre. Methods: Consent was obtained from 90 patients who were sent an on-line questionnaire. Areas asked about included experiences of transition, healthcare staff and the ward services and environment. Results: The response rate was 78% (n = 70) and mean age was 20.3 yrs (range 16−24 yrs). 83% of participants had attended a transition clinic (n = 58). 91% (n = 53) would have chosen to attend a transition clinic if given the option again (p<0.0001). Of those who had not previously attended ten said they would if asked now. Participants who had been in the adult centre for >5 yrs (23%) rated their admission experiences higher than those who had joined the centre more recently (p<0.03). The CF Team were scored more highly than ward based staff (p<0.1). Discussion: Response rate may reflect the use of an on-line questionnaire in this younger population. The majority of participants had attended a transition clinic and acknowledge its usefulness. Those who had been attending the adult centre for longer were happier with all aspects of an admission. CF Team Members with specific training and experience of this age group received higher scores than the ward based staff. Conclusion: The importance of transition clinic and support that patients receive from the CF team is acknowledged. While patient experience scores improve with time, there is a clear need to improve support and education for ward based staff.