Perceptions in 7700 patients with rheumatoid arthritis compared to their families and physicians.
OBJECTIVE
To compare perceptions of patients with rheumatoid arthritis (RA) to those of their families and usual physicians regarding pain and subjective experience of the disease.


METHODS
Questionnaires were mailed to patients listed in the files of a non-profit patient organization (Association Française des Polyarthritiques). Each patient, one family member (or close friend), and the usual physician were each asked to complete a questionnaire. Concordance among replies made by patients, family/friends, and physicians was evaluated using the kappa coefficient.


RESULTS
Questionnaires were sent to 20,468 patients, among whom 7702 (38%) mailed back adequate data. The family member was usually the spouse (70%) and the usual physician a rheumatologist (68%). Joint pain was described by patients as variable (80%) and unpredictable (68%). Patients reported a need to push themselves (86%), frustration (86%), anxiety about possible disease progression (89%), and being prevented from making plans for the future (6%). A negative impact was reported on recreational activities (84%), work (56%), and family life and sexuality (51%). Concordance was excellent for pain severity (kappa>0.90) and good for the main joint-pain characteristics and experience of the disease (kappa>0.70), although family members tended to overestimate, and physicians to underestimate, the intensity of the pain.


CONCLUSIONS
We found good overall agreement between perceptions of patients, their families, and their physicians, despite differences between these last two groups. Our qualitative analysis showed not only a major physical impact of the disease, but also marked negative psychosocial effects.
Pouchot
Jacques
J
Internal Medicine Department, European Georges Pompidou Teaching Hospital, 20 rue Leblanc, Paris 75015, France. jacques.pouchot@egp.aphp.fr
Le Parc
Jean-Marie
JM
Queffelec
Laurence
L
Sichère
Patrick
P
Flinois
Alain
A
D000203:Activities of Daily Living; D001172:Arthritis, Rheumatoid / Q000150:complications / Q000523:psychology*; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D003430:Cross-Sectional Studies; D005260:Female; D006304:Health Status; D006801:Humans; D007596:Joints / Q000503:physiopathology; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000209:etiology / Q000503:physiopathology / Q000523:psychology; D010361:Patients / Q000523:psychology*; D011788:Quality of Life; D012720:Severity of Illness Index; D012803:Sick Role; D011795:Surveys and Questionnaires