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The development of a model of follow up care for adult patients with inflammatory bowel disease

Kemp, Karen

[Thesis]. Manchester, UK: The University of Manchester; 2013.

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Abstract

Introduction Inflammatory bowel disease (IBD), Crohn’s Disease and ulcerative colitis, are long term conditions which follow a relapsing and remitting pattern. The rising incidence of IBD in adults and children has implications for the lifelong burden of disease and the provision of specialist services. Patients are predominantly managed by secondary care and follow a traditional, scheduled follow-up cycle, which is unsustainable and unsatisfactory. Patients with IBD should have access to specialist care which is delivered according to their values and needs. However few studies have examined patients’ views of follow-up care. There is also concern in the UK that services for patients with long term conditions are not orgnised to promote independence with silo working in primary and secondary care.These may be brought together formally through the development of models of care. Utilization of current out-patient spaces to regularly review stable patients is inappropriate and is challenged by commissioners.The question remains as to what models of follow-up are we able to offer patients which are acceptable and what is the role of the general practitioner (GP) and primary care within this. The aim of this study was to develop an integrated, acceptable, model of follow-up care for patients with IBD.Methods The study follows the development phase of the MRC Framework for complex interventions. A best evidence synthesis was undertaken to identify the follow-up care models in IBD. A meta-synthesis of the health and social care needs of patients with IBD was conducted to explore the impact of living with IBD. Qualitative interviews with 24 IBD patients (18 patients had CD, and 6 UC, age range 27-72 years, disease duration range 2 – 40yr) and 20 GPs purposively selected from across NW England were carried out. Patients were asked about their experience, values and preference of follow-up care. The GPs were questioned about their current and potential role in IBD. Analysis was undertaken using Framework Analysis. The best evidence synthesis, meta-synthesis and interviews were synthesised by an expert panel, Consultant Gastroenterologist, patient, GP, IBD Nurse, to develop the model of follow-up care.Results There were similarities and commonalities between the patient and general practitioner interviews. Patients did not want to be seen when well, GPs wanted more involvement in care and there is scope for an IBD outreach nurse at the interface of primary/secondary care. Discharging quiescent patients into enhanced GP care, to ensure equitable treatment, was acceptable to all, as was the concept of ‘virtual’ clinics. Patients would initiate self referral within the ‘virtual’ arm whilst patients under GP care would be referred back into secondary care as a rapid referral <7days and not using a new patient tariff. Complex IBD patients would remain under secondary care. A stratified model of follow-up care was developed.Conclusion This study provides an acceptable integrated model of follow-up for patients with IBD. It takes into account the growing incidence of IBD and UK policy to reduce inappropriate follow-up. It emphasises role of self management, the integration of primary and secondary care, placing the patient closer to home whilst allowing secondary care to concentrate on complex patient management.

Layman's Abstract

Inflammatory bowel disease, Crohns Disease and ulcerative colitis, are long term conditions with currently no know cure. Patients are managed predominantly within secondary care which is unsustainable and unsatisfactory, especially when the patient is well. This study explores other ways of providing follow- up care and the needs and preferences of patients by qualitative interviews. Bringing together primary and secondary care to manage patients long term conditions is a key aspect of NHS policy and so the views of general practitioners were also sought. The combined evidence, interviews with patients and general practitioners, were brought together and synthesised to develop a model of follow up which is acceptable, feasible and efficient for adult patients with inflammatory bowl disease.