RESEARCH REPORT PLATFORM PRESENTATION

THE PERCEPTIONS AND EXPERIENCES OF PATIENTS RECENTLY DIAGNOSED WITH FIBROMYALGIA SYNDROME. Diver C^1,2, Avis M¹, Freeman K¹; ¹The University of Nottingham, Nottingham, UK. ²Nottingham University Hospitals NHS Trust, Nottingham, UK

PURPOSE: To describe the perceptions and experiences of patients on being recently being diagnosed with fibromyalgia syndrome. RELEVANCE: Fibromyalgia syndrome (FMS) is a musculoskeletal condition of unknown aetiology characterised by chronic widespread pain and poor sleep. It predominantly affects middle-aged women. There is no diagnostic test and diagnosis is criteria based and often contested. Previous studies have reported patient perceptions of being diagnosed with fibromyalgia but this is in patients who have been in receipt of their diagnosis for some time (1-30 years). This study investigates this phenomenon within 2 months of diagnosis. PARTICIPANTS: 23 patients (22 female, 1 male) with a first diagnosis of FMS by a Consultant Rheumatologist were recruited from a Secondary Care Hospital. The patients are part of a larger longitudinal and on-going 2 year study. METHODS: Qualitative in-depth semi-structured interviews were used to identify the perceptions and experiences of patients recently diagnosed with FMS. An interview guide was formulated from previous research on FMS and chronic illness. Patients were given of choice of where the interview was conducted: their home, the hospital, the university or any other venue they suggested. The Fibromyalgia Impact Questionnaire (FIQ) was performed at baseline to describe the sample recruited. Interviews were tape recorded and hand written notes made. ANALYSIS: The interviews were transcribed verbatim. They were analysed using qualitative content analysis. The data was coded using NVivo and then recurrent themes and meanings were identified. RESULTS: ‘Being diagnosed’ was an important event in the patient’s life. Four descriptive categories were grounded in the data, labelled struggle for a diagnosis, meanings attached to the diagnosis, access to help and the future. For many patients the receipt of a diagnosis was a significant event in a journey that had usually begun some years previously with a visit to their GP. Whilst the diagnostic label legitimised the way they felt, it was also interpreted as ‘uncertain’ and ‘incurable’ and frequently linked with previous life events. Provision of a diagnosis provided them access to help and information that was previously unavailable and for some to consider the future and begin the process of acceptance and adaptation. CONCLUSIONS: This study highlights the importance of receiving a diagnosis to patients with an ‘invisible illness’ like FMS and the importance of validating both subjective and objective findings. There are disadvantages of diagnosis associated with stigma and an uncertain illness trajectory. However, these are outweighed by the advantages of being able to construct a new identity, acknowledgement and acceptance of the illness and the ability to consider adaptive coping strategies. IMPLICATIONS: Currently there is a predominance of the “biological” in the biopsychosocial model, in the assessment and management of patients with FMS.Health care professionals should be made aware of the importance of an early diagnosis on the perceptions and experiences of patients with FMS.In assessing and manageing patients with FMS they need to consider: the importance of being believed; the role of a medical diagnosis; the significance of the language used and the impact of diagnosis on identity and stigma. KEYWORDS: Qualitative research; Semi-structured interviews; Fibromyalgia syndrome (FMS); Diagnosis. FUNDING ACKNOWLEDGEMENTS: None. CONTACT: claire.diver@nottingham.ac.uk

ETHICS COMMITTEE: Nottingham Research Ethics 2, 1 Standard Court, Park Row, Nottingham NG1 6GN, England, UK