OBJECTIVES

Uterine fibroids (UF) affect up to 70% of women by the age of 50, with 20-50% experiencing clinical symptoms impacting daily life; heavy menstrual bleeding (HMB) and pain are the most frequently experienced symptoms. Limited evidence exists on the patient experience of pain in UF from longitudinal real-world studies.

METHODS

A 4-month prospective study was conducted in 350 women in the USA with UF, moderate-to-severe pain, and HMB to assess the disease burden of pain and its related treatments. In addition to clinical and demographic characteristics, patients completed the UF symptom severity (UFS-QOL-SS) scale (0 to 100, higher scores indicate greater severity), an 11-point NRS on UF-associated pain, and daily surveys on pain medication use. Data were collected electronically via a decentralized health data platform. Here, the baseline characteristics and disease burden are reported.

RESULTS

The mean (SD) age of participants was 37 years (± 6.4); 51.7% were White and 36.3% African-American. The mean (SD) age at onset of HMB and moderate-to-severe pain was 19.8 (± 8.9) and 20.4 (± 8.6) years, respectively, while the mean age at UF diagnosis was 29.2 (± 8.0). Women reported a mean (SD) UF-symptom severity of 51.2 (± 19.2), and a mean worst UF-associated pain score of 7.17 (± 1.54). While more than half of the respondents were reporting not taking any medications for their HMB, about two thirds used medications for their UF-associated pain, with over-the-counter (65.1%) medications being the most common.

CONCLUSIONS

The findings reported here provide evidence of the significant burden that UF imposes on women: while symptom onset occurred early in life, women experienced on average a 9-year gap from symptom onset to diagnosis. Women mainly managed their UF-associated pain with over-the-counter medications, while not receiving treatments for HMB. Hence, there are significant unmet diagnostic as well as treatment needs in UF.