Background Pain is a major symptom in chronic inflammatory rheumatism. Pain intensity doesn't always correlate with disease activity and it can persist even when RA seems in clinical and biological remission. Little is known about the patients' perception of their treatment efficacy on pain, of pain influence in their life and their expectations for pain management. A French patients association (AFPric) conducted a national survey to explore patient's point of view on pain in their rheumatism.
Objectives Describe in patients with chronic inflammatory rheumatism, their perception of treatment efficacy on pain, the impact of pain in their life and their expectations on pain care, in a nationwide survey.
Methods A nationwide survey with a 20-item questionnaire was conducted. The questions were developed by patients and rheumatologists in focus groups. Questionnaires were e-mailed to every member of the association (9065 members). Answers were collected until the 17th July 2016. Answers were anonymous.
Results One thousand thirty nine patients (response rate 19.2%) answered the questionnaire with 1510 women (86.8%), mean age was 59 years [18–85 years]. For more than half (58%) of the patients, their rheumatism had more than 10 years of evolution. Rheumatoid arthritis was the main rheumatism with 1377 patients (87%). Among the 1194 patients (76%) under conventional DMARDs 46.4% considered the cDMARDs efficacy on pain was between 70 and 100%, on the other hand for 17.7% of the patients, cDMARDs efficacy on pain was less than 30%. Among the 744 patients (47.6%) receiving a biological DMARD, 66.2% considered bDMARDs efficacy on pain was between 70 and 100% and 10% considered it was 30% or less. Among the 658 patients (42.3%) receiving oral corticosteroids, 56.6% considered corticosteroids' efficacy on pain between 70 and 100% and 12% considered it was less than 30%. Patients were asked to rate the weight of pain among their symptoms, for 38% of the patients pain represents 70 to 100% of the symptoms of their rheumatism, for 31.7% it represents 40 to 60% and for 30.3% 30% or less. The mean weight is 51.55% Almost half of the patients (46.8%) consider that their pain is underestimated by health professionals. For 37.2% of the patients, their current treatments are not appropriate for their current pain intensity. Finally 528 (35.7%) patients are not satisfied with pain management offered by health professionals, 90% of them think that pain management is too standardized and 80% think that functional impact of chronic pain is not taken in consideration. Among the expectations, 95% of the patients wish a tailored pain management by their rheumatologist, 82.9% wish to participate to support groups with health professionals specialized in pain care.
Conclusions This nationwide survey on pain among chronic inflammatory rheumatism patients shows that even in the biological DMARDs era, pain is the main concerning symptom for the patients. It is striking in this large cohort that almost half of the patients consider their pain insufficiently taken care of.
Acknowledgements This study received an institutional grant from UCB
Disclosure of Interest None declared