Patient perspectives on the impact of fibromyalgia

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Abstract

Objective

The objective of this study was to elicit and assess important symptom domains and the impact of fibromyalgia on patients’ quality of life and functioning from a patient's perspective. The intention was to collect this information as part of an overall effort to overcome shortcomings of existing outcome measures in fibromyalgia.

Methods

This was a qualitative study in which six focus group sessions with 48 women diagnosed with fibromyalgia were conducted to elicit concepts and ideas to assess the impact of fibromyalgia on their lives.

Results

The focus groups conducted with fibromyalgia patients identified symptom domains that had the greatest impact on their quality of life including pain, sleep disturbance, fatigue, depression, anxiety, and cognitive impairment. Fibromyalgia had a substantial negative impact on social and occupational function. Patients reported disrupted relationships with family and friends, social isolation, reduced activities of daily living and leisure activities, avoidance of physical activity, and loss of career or inability to advance in careers or education.

Conclusion

The findings from the focus groups revealed that fibromyalgia has a substantial negative impact on patients’ lives.

Practice implications

A comprehensive assessment of the multiple symptoms domains associated with fibromyalgia and the impact of fibromyalgia on multidimensional aspects of function should be a routine part of the care of fibromyalgia patients.

Introduction

Fibromyalgia is a chronic disorder characterized by persistent and widespread pain. It is common in the United States with an estimated prevalence of 2% in the adult general population. Fibromyalgia disproportionately affects women, with a prevalence of 3.4% in women, compared with 0.5% in men [1]. Worldwide prevalence rates in adults range from 0.5 to 5% [2]. Fibromyalgia is defined by the American College of Rheumatology (ACR) as chronic (≥3 months) widespread pain and pain on palpation of at least 11 of 18 tender point sites throughout the body [3]. Recent evidence suggests that there is a dysregulation of pain pathways leading to central pain augmentation in patients with fibromyalgia [4].

In addition to pain and tenderness, patients with fibromyalgia also report other symptoms, including sleep disruption, fatigue, depression, anxiety, memory and concentration problems, headaches, numbness/tingling, and others [3]. These multiple symptoms may have an immense impact on daily life, limiting participants’ functioning and emotional well-being [5], [6].

Fibromyalgia is diagnosed through a combination of patient history and physical examination. While not required, exclusion of other causes for symptoms attributed to fibromyalgia is important clinically for optimal management [7]. Fibromyalgia frequently co-occurs with other medical conditions, and it is important to recognize and treat fibromyalgia as a distinct disorder. Some clinicians may not recognize fibromyalgia or may view the condition as a psychiatric disorder or as simply not credible. As a result, patients can be left feeling confused and frustrated and are often left to cope with symptoms and the related impact on their own [5], [8]. However, this is changing as clinicians become more aware of the condition and treatment options increase.

Previous qualitative studies of patients with fibromyalgia have used individual patient interviews to explore the personal experience of living with fibromyalgia [9], [10], [11], [12], [13], [14], [15], [16]. In these studies, patients consistently described symptom domains that interfered with their function and quality of life, including pain, fatigue, sleep disturbance, cognitive difficulties, and mood disturbances such as depression. Common themes about the impact of fibromyalgia also emerged from these studies. Patients reported difficulty dealing with a disorder that has no outward signs, leading to concern about not being taken seriously by their physicians or others. The unpredictable and fluctuating course of the symptoms interfered with the patients’ ability to plan work or social activities. Patients had to change their self-perception and the way they conducted their lives to accommodate fibromyalgia. Activities often took more effort and time to complete, and patients had to pace themselves and prioritize activities to conserve their limited energy. Patients commonly experienced loss of intimacy with partners and social isolation. Several factors were identified that affected the course of their symptoms, including weather, being sedentary or overactive, and stress.

Clinical trials of the treatment of fibromyalgia have incorporated some of the symptom domains and impacts described by patients in these previous qualitative studies. However, there is still lack of consensus about the full set of domains that should be evaluated in treatment trials of fibromyalgia or as part of routine assessment in clinical settings. The underlying patient research to identify the entire set of domains important to patients with fibromyalgia through spontaneous focus group elicitation has not been conducted. The goal of the present study was to conduct focus groups of patients with fibromyalgia to identify the key symptom and functional domains associated with fibromyalgia from the patients’ view and to elicit their perspectives on the impact of fibromyalgia. The intention was to collect this information as part of an overall effort to overcome shortcomings of existing outcome measures in fibromyalgia.

Section snippets

Overview

A total of six focus groups were conducted (two focus groups at each of three sites) at the following sites: (1) Seattle Rheumatology Associates (community-based rheumatology private practice), Seattle, Washington, (2) University of Cincinnati Medical Center (university-based primary care private practice), Cincinnati, Ohio and (3) University of Michigan Medical Center (university-based rheumatology practice), Ann Arbor, Michigan. The patients were identified by the investigators (LMA, LJC and

Patient demographics

In total, 48 female subjects participated in the six focus groups. Eight patients participated in the first Seattle, WA focus group, and 10 participated in the second focus group. Seven patients participated in each of the first Cincinnati, OH and Ann Arbor, MI focus groups, and eight patients participated in each of the second focus groups at each of these locations.

The majority (94%) of participants were white (n = 45), and the average age was 51 years (range: 31–72 years). Detailed participant

Discussion

This focus group study revealed that fibromyalgia has a profound impact on patients’ lives. The symptoms of fibromyalgia most consistently reported by patients included pain, fatigue, sleep disturbance, depression, anxiety, and cognitive impairments. Fibromyalgia substantially impaired the quality of life and adversely affected social and occupational function. The focus groups identified several domains that could be targeted in treatment of fibromyalgia.

The results of this study are

Acknowledgements

We would like to thank Allan Benedict (A&K Research Inc., Dearborn, MI) who conducted the focus groups, Polyxane Mertzanis, MPH and Catherine Chen (Mapi Values, Boston, USA), and John Coombs (Pfizer Inc., Ann Arbor, USA) for their assistance with this work. This study was funded by Pfizer Inc. and by NIH (NIAMS R01-AR-05-3207, Dr. Arnold, Principal Investigator). Somali Misra Burgess, PhD, Susan C. Palmer, and Linda Abetz, MA, are employees of Mapi Values, who were paid consultants to Pfizer in

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