Only 20% of Patients with Fibromyalgia Report Receiving Satisfactory Information on Pain

Sigrid Hørven Wigers, MD

Credit: ResearchGate

A survey of patients with fibromyalgia revealed clear inadequacies in pain-related healthcare as well as opportunities to increase healthcare satisfaction and pain relief, according to a study published in Scandinavian Journal of Pain.¹

Fibromyalgia is often a difficult condition to treat as the etiology is disputed, the underlying pain mechanisms are not well understood, there is no cure, and the condition can present with—in addition to pain—symptoms such as fatigue, cognitive issues, sleep problems, and emotional distress. Previous research has shown many clinicians are unfamiliar with how to diagnosis and treat the condition and, in turn, place it at the bottom of the hierarchy of diseases. Further, its classification as an “invisible” illness can lead to less empathetic behavior from clinicians when compared to pain that has a clear cause.²

“Patients struggle to receive proper examination, information, and follow-up,” wrote a team of investigators led by Sigrid Hørven Wigers, MD, of the Department of General Practice, Institute of Health and Society, University of Oslo, Norway. “This discords with the international guidelines for fibromyalgia management, which stress the importance of prompt diagnostics, sufficient patient information, thorough pain assessment, and regular follow-up.”

To determine patients’ pain-related healthcare experiences and identify factors linked to pain relief and high satisfaction, investigators created an anonymous, online, patient-administered, 25-item survey, which was given to members of the Norwegian Fibromyalgia Association (NFA). The survey included questions about pain-related healthcare experiences from both primary and specialist care.

The survey contained questions regarding patient characteristics, perceived physician pain competence, a lack of knowledge of their pain and how to get better, information quality and sources, unmet needs, physician-mediated pain relief, and satisfaction with healthcare.

A total of 1626 patients with fibromyalgia completed the survey. Participants had a mean age of 51 years, a mean pain duration of 21.8 years, and reported experiencing 12.7 years of pain prior to a fibromyalgia diagnosis. Most (95%) patients were female.

Regarding lack of knowledge, 33.9% (n = 550) did not know why they had pain and 56.6% (n = 917) did not know how to improve their pain. Additionally, more than half of participants reported not receiving satisfactory information from a clinician on the cause of their pain and how to improve it (ranked as “below medium”). When patients were asked how satisfied they are with the overall healthcare system’s handling of their pain problems, only 19.7% (n = 301) rated it as “great” and 1.8% (n = 27) rated it as “very great.”

Many patients also mentioned a lack of medical specialized competence on muscle pain, pain relief was low, and adherence to guidelines was deficient. Only 14.8% of participants were satisfied with a non-clinician provider assessing and treating their pain, and approximately half (46.9%) were dissatisfied with their global pain-related healthcare.

Participants mentioned regular follow-up support (46.5%), good and comprehensible pain explanation and guidance on symptom improvement (44.4%), clinical examination and pain assessment (34.8%), and further referral to a medical specialist (34.3) among their unmet needs.

However, pain relief and healthcare satisfaction were significantly increased in patients who were educated about their fibromyalgia and received care from a knowledgeable clinician who gave them information and guidance. These patients also agreed with their provider on explanations and advice and were more likely to not have any unmet needs.

Investigators note generalizability may be limited as the study only included patients with an NFA membership, although findings align to previous research which helps to confirm results.

“Our findings indicate essential areas for fibromyalgia healthcare improvement and suggest a need for further research on fibromyalgia-pain mechanisms to increase professional knowledge and consensus,” investigators concluded.

References

1. ^{Wigers SH, Veierød MB, Mengshoel AM, et al. Healthcare experiences of fibromyalgia patients and their associations with satisfaction and pain relief. A patient survey. Scand J Pain. 2024;24(1):10.1515/sjpain-2023-0141. Published 2024 Apr 16. doi:10.1515/sjpain-2023-0141}
2. ^{Doebl S, Hollick RJ, Beasley M, Choy E, Macfarlane GJ. Comparing the impact of symptoms and health care experiences of people who have and have not received a diagnosis of fibromyalgia: A cross-sectional survey within the PACFiND study. Arthritis Care Res (Hoboken). 2022;74:1894–902.}