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THU0468 Diagnostic experience of patients with fibromyalgia – a systematic synthesis of qualitative studies
  1. AM Mengshoel1,
  2. J Sim2,
  3. B Ahlsen1,
  4. S Madden3
  1. 1Institute of Health and Society, University of Oslo, Oslo, Norway
  2. 2Institute for Primary Care and Health Sciences, Keele University, Staffordshire
  3. 3Faculty of Medical Science, Anglia Ruskin University, Chelmsford and Cambridge, United Kingdom

Abstract

Background In recent years, the evidence-based practice (EBP) movement has become embraced by clinicians and scientists world-wide. A guiding principle of the EBP is that the best evidence available should inform clinical practice. At the same time, patients' experiences should be taken into consideration in the clinical disicion-making. Over the years, the diagnosis of fibromyalgia (FM) has been subject to numerous debates among scientists and clinicians. Despite that a diagnosis may lead to a biographical disruption, be a starting point for patients to make sense of their illness, and shape expectations for the future, the diagnostic debates have not been appreciably informed by how patients themselves perceive the diagnosis.

Objectives To examine how individuals experience the process and consequences of receiving a diagnosis of fibromyalgia

Methods A systematic literature search of qualitative studies up to May 2016 was performed. A systematic search was carried out in Medline (n=562), PsychInfo (n=430), Cinahl, AMED (n=95), and Social Science Citation Index (n=486) up to May 2016, supplemented by items from the authors' knowledge of the literature. Duplicates, quantitative studies, studies addressing chronic pain with no specification of diagnosis or including patients with other diagnoses, editorials, reviews, conference reports and dissertations were excluded. After this reading 93 qualitative studies of patients' experience were read to identify whether they included information about patients' diagnostic experience. Twenty-six papers, one book and a book chapter were included. Information about diagnostic experiences were extracted and subjected to an interpretive analysis in accordance with principles of meta-ethnography.

Results Years were normally spent consulting specialists in an attempt to confirm the reality of symptoms and make sense of the illness. In this process, the reality of the illness was questioned. Great relief was expressed at finally achieving the FMS diagnosis. However, relief waned when therapies proved ineffective. Health professionals and others again questioned whether individuals were genuinely ill, that the illness had a psychological nature, and whether they were doing their best to recover. For the patients, the diagnosis did not provide a meaningful explanation of their suffering and had limited power to legitimate illness. The patients felt blamed for their failure to recover which meant their personal credibility and moral identity were put at stake.

Conclusions The FMS diagnosis has limitations in validating and making sense of patients' illness experiences and in providing social legitimation of their illness. Social relationships are strained during the diagnostic process and in the course of ineffective therapies.

Disclosure of Interest None declared

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