Urgent Need for Better Support and Care for Patients With Fibromyalgia

The need for a model of care and long-term support for patients with fibromyalgia is urgent, especially to ensure a proper and prompt diagnosis, according to research results published in Arthritis Care & Research.

The study involved 328 participants, all of whom had completed a previous screening survey, reported at least 12 symptoms of fibromyalgia (out of 31), or had received a diagnosis of fibromyalgia. Participants were categorized into 3 mutually exclusive groups: those with a fibromyalgia diagnosis (n=85), those without a fibromyalgia diagnosis but who met the 2011 criteria (n=110), and those who did not have a diagnosis of fibromyalgia nor meet the 2011 criteria but who reported chronic pain (n=133).

The mean age was similar among the 3 groups, which varied between 57 to 59 years. 85.9% of those in the fibromyalgia group were women, which is significantly higher than among the other groups.

Along with questions regarding impact of symptoms, participants were asked about quality of life using the EQ-5D-5L, Global Life Satisfaction, activity impairment using the Work Productivity and Activity Impairment Questionnaire (WPAI-GH), and about their patient experience through the PEQ, or patient experience questionnaire.

Throughout the study, the fibromyalgia and criteria groups were similar in terms of symptom impact, quality of life, and life satisfaction. For the fibromyalgia symptom scores, the fibromyalgia group’s score was 17, and the criteria group’s was 16. The chronic pain group’s score was 11.

The impact of symptoms on health status in the fibromyalgia diagnosis and criteria groups had SIQR mean scores of 57.2 and 57.4, respectively, whereas the chronic pain group was significantly lower with a SIQR mean score of 36.9. These scores were also reflected in the quality-of-life questions, where the EQ-5D-5L mean score for the chronic pain group was .63, but for the fibromyalgia diagnosis group, .43, and for the criteria group, .39.

Compared to the fibromyalgia groups, the chronic pain group was more likely to report a “satisfied” category when asked about Global Life Satisfaction. Another socioeconomic difference among the groups was that participants in the fibromyalgia group were significantly more likely to be unemployed due to the adverse impact of symptoms on their health.

When it came to health care experiences, those diagnosed with fibromyalgia reported fewer positive experiences compared to the other groups. Only 32% of the diagnosed fibromyalgia group endorsed the statement, “healthcare staff had done everything possible to make (them) feel physically comfortable,” compared to 41% of the criteria group and 49% of the chronic pain group.

The fibromyalgia group (28%) also was less likely to agree with the statement “that (their) care was very or extremely helpful in dealing with the problem(s) (they) sought help for” (42% and 52%, respectively). The diagnosed fibromyalgia group (28%) and the criteria group (30%), both were less likely to endorse the statement “that (they) had been given clear and understandable information about (their) symptoms and care” whereas the chronic pain group was more likely to agree (43%).

Because the initial questionnaire included a fibromyalgia symptom score screening ─ and those participants who had a score of at least 12 were chosen ─ study limitations include the chronic pain group being less broad and typical because the selected are most severe. This also indicates an understatement of the true differences between the chronic pain group and both fibromyalgia groups. Also, although they exhibited many symptoms, those in the fibromyalgia criteria group were also more likely to report other musculoskeletal diagnoses.

“Specifically, this work has highlighted that the impact of fibromyalgia symptoms is very similar between those with a diagnosis and those without a diagnosis but who meet criteria; that there needs to be awareness of the condition in men; and in terms of management, a focus on additional outcomes, such as work, to facilitate people who wish to do so, remaining in employment.”

Reference

Doebl S, Hollick RJ, Beasley M, Choy E, Macfarlane GJ; PACFiND study investigators. Comparing people who have and have not received a diagnosis of fibromyalgia: a cross-sectional survey within the PACFiND study. Arthritis Care Res.  Published online June 3, 2021. doi:10.1002/acr.24723