Laroche, F., Guérin, J., Coste, J., Trouvin, A.P., Perrot, S. (2019)
Fibromyalgia (FM) has a major impact on everyday life . Patients usually reports that FM is an unfair condition managed by sceptical physicians . Indeed, higher levels of invalidation are reported in patients with FM than in those with more visible rheumatic conditions . Perceived Injustice (PI) is defined as a combination of severity of loss, irreparability of loss, blame and sense of unfairness . This feeling increases pain intensity, disability, painful behavior, fear of movement, catastrophyzing, depression and decreases rates of return to work . We conducted a cross-sectional internet survey evaluating Frenchpatients’ FM impact and PI on quality of life as assessed by the Fibromyalgia Impact Questionnaire (FIQ) . A 103-item auto-questionnaire was posted in a national French website (e-health Sanoia platform) according to the Outcome Measures in Rheumatology . Details of the methods were previously reported . The statistical analysis included descriptive statistics, Chi2 tests and a multiple-regression analysis to identify factors (including PI) independently associated with quality of life.
All of the 4516 patients completed the questionnaire (Table 1). Feelings of injustice are reported by 77% of the participants. These feelings of injustice are related directly to fibromyalgia in 71% of cases, treatment and/or care in 44% and work in 41% (Table 1). We observed that there is significantly more PI in depressed people (85% vs. 70% – P < 0.0001) but it is not correlated with the existence of depression before fibromyalgia occurrence. PI is more frequent if suicide thought is present (88% vs. 69%, P < 0.0001). There is more PI when claims for social benefits (81% vs. 71%, P < 0.0001) or if the pathology is not recognized by employer (78% vs. 72%, P < 0.0001). There is no impact of demographic features on PI (P = 0.1).
In this population, the impact of FM is moderate (average FIQ Score of 51/100). FIQ score is however significantly affected by feelings of injustice (+5.1 points) (Table 2). Other factors affecting quality of life are low family income, part-time working and concomitant rheumatoid arthritis. The impacts of other clinical symptoms is not significant.
Despite some limitations (self-declaration, recruitment via patients’ associations, patients capable of using computer tools and lack of standardized evaluation tools other than the FIQ), this large French study shows the importance of perceived injustice in FM patients. Such feelings often arise when there seems to be no reason to the pain or the disease, as it is frequently the case in FM, which symptoms are not associated with organic lesions. Rheumatologists should be aware of these feelings in order to help patients feel better (recognition ofthe disease, reassurance and education)[2,9]. Indeed, a therapy such as acceptance and anger based interventions could be appropriate . Moreover, applying the Injustice Experience Questionnaire (IEQ) to other chronic pain patients would be useful to seek if this feeling is shared by other rheumatic diseases .
(publication) Laroche, F., Guérin, J., Coste, J., Trouvin, A.P., Perrot, S. (2019). Importance of feelings of injustice in fibromyalgia, large internet survey on experiences of 4516 French patients. Joint Bone Spine, 86(6), 808-810.