Title: Chronic Fatigue Syndrome (CFS/ME) interventions within the Primary Care Setting: Developing resources for support and self-management in primary care.
Funder: Department of Health (England)

Abstract: Background CFS/ME characterised by ? 6 months severe fatigue which impairs function, increases disability, NHS costs and unemployment, & affects 0.2-0.4% people in the UK. NICE guidelines recommend management in primary care with specialist referral when appropriate, requiring confidence in diagnosing and supporting people with CFS/ME. Qualitative work in the MRC FINE trial (ISRCTN 74156610) suggests GPs & Practice Nurses (PNs) receive little formal education/training about CFS/ME. GPs were not confident diagnosing CFS/ME. PNs & GPs feel unsupported in managing these patients, and many GPs are unsure of available resources and referral options. We will develop and evaluate resources and training to help practitioners improve their support and management of people with CFS/ME in primary care. Aims To develop patient & practitioner resources to improve primary care management of patients with CFS/ME. Within NHS Manchester our pilot will: Develop an education and training intervention for practices; Implement CFS/ME computer-template to assist in diagnosis & management; Develop practice-based CFS/ME register; Develop culturally sensitive patient resources; Develop a clinical CFS/ME facilitator role to support patients & practices; Promote collaboration between CFS/ME service & practices to ensure consistent management; Provide a directory of community/3rd sector resources to promote ‘joined-up’ services; evaluate the intervention acceptability, qualitatively from patient & practitioner perspectives; Generate an HTA proposal for an RCT, powered to evaluate these interventions. Plan of Investigation 0-6 months Develop: patient resources (book/diary, DVD); practitioner resources (educational/on-line materials); training package. Identify practices to receive training intervention. Submit Ethics application. 7-16 months Implement: training package (patient/practitioner resources & skills training) for practices; service facilitator to support practices & patients, link CFS/ME service & practices & promote collaborative working. 17-23 months Evaluate training: semi-structured interviews with people with CFS/ME & primary care practitioners within intervention practices; analysis of referrals to local services; estimate health service use. 24-30 months: Analyse data; Refine training package; Disseminate via PCT; Write for peer-review journals & HTA bid. Potential Impact This training intervention should result in earlier diagnosis of CFS/ME in primary care, more confident and earlier initial management by primary care practitioners and prompt referral of patients with CFS/ME to appropriate services. When provided with a more confident diagnosis it is likely that patients will play a more active role in self-care and condition management, experience improved outcomes, reducing progression towards the more severe end of the spectrum. Training of primary care practitioners will potentially relieve some pressure on current service providers allowing a focus on more moderate – severe sufferers of CFE/ME who are currently under-served in many areas, whilst patients with milder symptoms can be supported in primary care and self-management facilitated.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: DISPUTED AETIOLOGY AND OTHER