Need for information and for involvement in decision making among patients with rheumatoid arthritis: a questionnaire survey.
OBJECTIVE
To measure the need for information about rheumatoid arthritis (RA) and the level of desire for involvement in treatment decisions among patients with RA. To examine the relationship between these preferences and what factors (sociodemographic, disease, treatment, level of disability, and level of knowledge about RA) associate with these preferences.


METHODS
Questionnaire surveys were mailed to a randomly selected group of 600 patients with RA. Need for information and desire for involvement in decision making were measured using a validated tool (the Autonomy Preference Index).


RESULTS
The response rate was 57.3%. The need for information was very high. Information seeking preference scores (median 82.5, interquartile range 80.0-92.5) were significantly higher (P < 0.001) than decision making preference scores (mean +/- SD 56.4 +/- 13.6). Need for information and for decision making were both higher in women than men, and associations with these needs differed in men and women. However, younger age and greater knowledge of RA predicted greater need for decision making. There was no correlation between need for information and for involvement in treatment decisions for either sex (women: r(s) = 0.09, P = 0.19; men: r(s) = -0.06, P = 0.54).


CONCLUSIONS
There was a high level of need for information among patients with RA. Desire for involvement in treatment decision making was significantly lower and did not correlate with need for information. Associations with these needs differed for men and women.
Neame
Rebecca
R
Department of Rheumatology, King's Mill Hospital, Nottinghamshire, United Kingdom. Rebecca.Neame@qmc.nhs.uk
Hammond
Alison
A
Deighton
Christopher
C
D000328:Adult; D000368:Aged; D001172:Arthritis, Rheumatoid / Q000503:physiopathology / Q000523:psychology*; D003657:Decision Making; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D010358:Patient Participation; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires