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. 2010 Apr 26:10:102.
doi: 10.1186/1472-6963-10-102.

A patient survey of the impact of fibromyalgia and the journey to diagnosis

Ernest Choy  1 , Serge Perrot, Teresa Leon, Joan Kaplan, Danielle Petersel, Anna Ginovker, Erich Kramer
Affiliations

A patient survey of the impact of fibromyalgia and the journey to diagnosis

Ernest Choy et al. BMC Health Serv Res. .

Abstract

Background: Fibromyalgia is a painful, debilitating illness with a prevalence of 0.5-5.0% that affects women more than men. It has been shown that the diagnosis of fibromyalgia is associated with improved patient satisfaction and reduced healthcare utilization. This survey examined the patient journey to having their condition diagnosed and studied the impact of the condition on their life.

Methods: A questionnaire survey of 800 patients with fibromyalgia and 1622 physicians in 6 European countries, Mexico and South Korea. Patients were recruited via their physician.

Results: Over half the patients (61%) were aged 36-59 years, 84% were women, and the mean time since experiencing fibromyalgia symptoms was 6.5 years. Patients had experienced multiple fibromyalgia symptoms (mean of 7.3 out of 14), with pain, fatigue, sleeping problems and concentration difficulties being the most commonly reported. Most patients rated their chronic widespread pain as moderate or severe and fibromyalgia symptoms were on average "fairly" to "very" disruptive, and had a "moderate" to "strong" impact on patients' lives. 22% were unable to work and 25% were not able to work all the time because of their fibromyalgia. Patients waited on average almost a year after experiencing symptoms before presenting to a physician, and it took an average of 2.3 years and presenting to 3.7 different physicians before receiving a diagnosis of fibromyalgia. Patients rated receiving a diagnosis as somewhat difficult on average and had difficulties communicating their symptoms to the physician. Over one third (35%) felt their chronic widespread pain was not well managed by their current treatment.

Conclusions: This survey provides further evidence that fibromyalgia is characterized by multiple symptoms and has a notable impact on quality of life and function. The diagnosis of fibromyalgia is delayed. Patients wait a significant period of time before presenting to a physician, adding to the prolonged time to diagnosis. Patients typically present with a multitude of symptoms, all resulting in a delay in diagnosis and eventual management. Helping clinicians to diagnose and manage patients with fibromyalgia should benefit both patients and funders of healthcare.

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Figures

Figure 1
Figure 1
Percentage of patients who reported experiencing each symptom listed and the mean disruption scores. Disruption rated on a five-point scale from 1 = not at all disruptive, 2 = not very disruptive, 3 = fairly disruptive, 4 = very disruptive, 5 = extremely disruptive. Mean impact on QOL - higher score means greater impact.
Figure 2
Figure 2
Impact of fibromyalgia on employment and expenditure. Patients were asked to rate the direct affect of fibromyalgia on employment and expenditure.
Figure 3
Figure 3
Impact of fibromyalgia on aspects of life. 1 = no impact, 2 = slight impact, 3 = moderate impact, 4 = strong impact, 5 = very strong impact.
Figure 4
Figure 4
Patients who somewhat or strongly agreed with statements about physicians during fibromyalgia diagnosis and management. Patients rated statements about diagnosing and managing fibromyalgia 5 = strongly agree, 4 = somewhat agree, 3 = neither agree nor disagree, 2 = somewhat disagree, 1 = strongly disagree. * at least one experience.
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