Delayed Fibromyalgia Diagnosis Linked to Worse Disease Severity

Fausto Salaffi, MD, PhD

Credit: ResearchGate

A recent study found a delayed fibromyalgia diagnosis is linked to poorer patient outcomes, such as worsened severity.¹

“A diagnosis made within a period shorter than one year is associated with reduced disease severity,” wrote investigators, led by Fausto Salaffi, MD, PhD, from the Rheumatology Unit at Università Politecnica delle Marche, Carlo Urbani Hospital in Italy.

A delayed diagnosis often is associated with poorer patient outcomes. If a patient receives care earlier, symptoms can be managed, rather than worsening in severity without treatment. Recent studies have shown a delayed appendicitis diagnosis was linked to increased hospital care costs, and a shorter time to psoriatic arthritis (PsA) diagnosis (within a year) was linked to a greater likelihood of reaching remission.^2,3

A delayed diagnosis often has a significant financial impact on families with doctor visits, medical equipment, prescriptions, and transportation expenses—all of which could have possibly been avoided with early detection.⁴ According to Every Life Foundation, a delayed diagnosis can cost up to $517,000 in avoidable costs per patient.

In Italy, the fibromyalgia prevalence is approximately 2.2% among the general population, ranking as the second most rheumatic disease in the country.¹ However, 75% of patients with fibromyalgia still do not get correctly diagnosed. Thus, investigators sought to assess the impact of the diagnostic delay on fibromyalgia severity.

The team retrospectively extracted data from a large database, the Italian Fibromyalgia Register, to evaluate patients with fibromyalgia in the Marche Region. Patients were diagnosed with fibromyalgia based on the 2016 American College of Rheumatology criteria.

Investigators obtained data on the time to diagnosis. Participants were categorized as having an early diagnosis if their fibromyalgia was diagnosed within one year, a late diagnosis if fibromyalgia was diagnosed ≥ 1 year but ≤ 5 years, and a very late diagnosis if fibromyalgia was diagnosed ≥ 5 years after the symptoms started. On top of that, the team collected data on the revised Fibromyalgia Impact questionnaire, the modified Fibromyalgia Assessment Status, and the Polysymptomatic Distress Scale which contained the Widespread Pain Index and the Symptom Severity Scale.

The study included 616 patients with fibromyalgia, with 92.2% female, a mean age of 52.36 years, a mean disease duration of 6.46 years, and a mean time to diagnosis of 3.45 years. In the sample 169 participants had an early diagnosis, 320 had a late diagnosis, and 127 had a very late diagnosis.

Investigators observed a significant difference in disease severity between patients with an early, late, and very late diagnosis. The longer it took to diagnose fibromyalgia, the greater the disease severity (P = .000001). This was demonstrated through mean revised Fibromyalgia Impact Questionnaire scores (early diagnosis: 35.00; late diagnosis: 47.33; very late diagnosis: 61.16), mean modified Fibromyalgia Assessment Status scores (19.76, 23.00, 31.00, respectively), and mean Polysymptomatic Distress Scale scores (13.36, 16.09, 23.00 (IQR, 18.25 – 26.00, respectively).

The team stated the study was limited by this being a monocentric study, and thus the results cannot be generalized to other healthcare settings. They also wrote how opinion-based research is a challenge since the survey collects participants’ feelings, attitudes, and perceptions but they can fluctuate.

“This study reveals a significant delay in the diagnosis of [fibromyalgia], and the delay is associated to worse disease severity,” investigators concluded. “Future clinical guidelines should focus on this issue, devising diagnostic protocols for both specialists and primary care providers to facilitate timely and accurate patient evaluations. Pursuing an expedited diagnosis for [fibromyalgia] might also yield significant economic benefits and lower healthcare consumption.”

References

1. ^{Salaffi F, Farah S, Bianchi B, Lommano MG, Di Carlo M. Delay in fibromyalgia diagnosis and its impact on the severity and outcome: a large cohort study. Clin Exp Rheumatol. 2024;42(6):1198-1204. doi:10.55563/clinexprheumatol/ta9xtc}
2. ^{Derman, C. Delayed Appendicitis Diagnosis Linked to Increased Hospital Care Costs. HCPLive. April 15, 2024. https://www.hcplive.com/view/delayed-appendicitis-diagnosis-linked-to-increased-hospital-care-costs. Accessed July 8, 2024.}
3. ^{Smith, T. Improved Outcomes for Psoriatic Arthritis Patients with Less Than a Year Delay for Diagnosis. HCPLive. March 21, 2024. https://www.hcplive.com/view/improved-outcomes-for-psoriatic-arthritis-patients-with-less-a-year-delay-for-diagnosis. Accessed July 8, 2024.}
4. ^{The Cost of Delayed Diagnosis in Rare Disease: A Health Economic Study. Every Life Foundation. https://everylifefoundation.org/delayed-diagnosis-study/#:~:text=A%20delayed%20diagnosis%20worsens%20outcomes,that%20could%20have%20been%20avoided. Accessed July 8, 2024}