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[Care pathway to diagnosis in fibromyalgia and inflammatory rheumatic diseases: A patient-centered approach using a
Magda Harim1, Alexandra Kachaner2, Alice Combier3
1SAMU - SMUR, hôpital Henri-Mondor, Assistance publique-Hôpitaux de Paris, Paris, France.
Background:
Many doctors have a complicated relationship with patients with fibromyalgia (FM), whereas they feel more comfortable with patients with well-defined clinico-biological illnesses. The aim of the study was to compare the care pathways as experienced by patients with FM or those facing well-defined rheumatic diseases.
Methods:
Consecutive participants diagnosed with FM, spondyloarthritis (SpA), or rheumatoid arthritis (RA) were prospectively recruited from a tertiary outpatient center. Utilizing a semi-structured guide, participants were interviewed. A quantitative analysis compared medical pathway characteristics, and a qualitative analysis explored their experiences.
Results:
Nineteen participants with FM and 18 with PR or SpA were included. Patients with FM exhibited increased consumption of medical care, a stronger impact on their daily lives, and a diagnostic delay that was seven times longer. All participants reported an overwhelming experience of pain and a perceived lack of credibility regarding this pain. An altered doctor-patient relationship was more prevalent among participants with FM, who expressed pessimism, feelings of rejection, and an increased need for attentive listening.
Conclusion:
Compared to usual rheumatic diseases, fibromyalgia is characterized by a prolonged diagnostic latency and faces a lack of acknowledgment, leading to a distortion in the doctor-patient relationship. However, whatever the underlying disease, patients report a lack of consideration of their pain, as long as it is unexplained.
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