P589. A qualitative exploration of the follow up needs of patients with inflammatory bowel disease
K. Kemp1, J. Griffiths2, S. Campbell3, K. Lovell2, 1University of Manchester / Manchester Royal Infirmary, School of Nursing / Gastroenterology, Manchester, United Kingdom, 2University of Manchester, School of Nursing, Manchester, United Kingdom, 3Manchester Royal Infirmary, Gastroenterology, Manchester, United Kingdom
IBD care is delivered predominantly by secondary care. The unpredictable nature of IBD, need for medication, and colorectal cancer surveillance has rooted patients (pts) in follow-up (FU) of hospital specialists. Yet the utilization of out-pt spaces to review stable pts is inappropriate for pts and commissioners, places unnecessary strain on secondary care. There are no models of FU care for pts with IBD, which take into account the fluctuating nature of the disease, no studies to date have involved pts in the process of defining the type of organization/service delivery they would like to receive. The aim of this study was to explore pts' needs for FU care, their experience of the system and how they would wish it to be reorganised.
Qualitative interviews with 24 IBD pts were conducted. 18 pts had CD, 6 UC. Age range 27–72 years, disease duration range 2–40yrs. Interviews were 40–60 mins duration. Pts were asked about the role of FU, their experience of FU patterns, service delivery and other modes of FU. Thematic analysis of interviews was undertaken using NVivo 9.0.
Four themes were identified. (1) Frustration: pts expressed frustration at the traditional model of FU with inflexible, over booked, delayed clinics. (2) Lack of integrated primary and secondary care: no pts consulted their GP about IBD, none were directed to the GP by secondary care and told to contact the hospital if there were any problems. All pts welcomed GP involvement providing that the specialist would still oversee their management. (3) Value of the IBD nurse: this was evident throughout, as a significant point of contact and support. (4) No need for FU when well: pts did not want to be seen when well. They stated that this was a waste of both their time and the healthcare professionals. Recommendations for FU: pts recommended patient-initiated appointment systems, use of telemedicine/telephone including ‘virtual’ clinics, greater emphasis on self management, more involvement of their GP, the need for an IBD nurse at interface of primary and secondary care, flexible timing of clinics and only to be seen rapidly when flaring up, or compulsory appointments.
This study provides a unique insight into the FU needs of IBD pts. Pts want flexibility and choice, not to be seen when ‘well’ and to be seen rapidly when unwell. Pts welcome new and innovative approaches to FU. Pts do not want to be discharged from the secondary care system and the specialist must still be involved with their overall management.