Need for Information and for Involvement in Decision Making Among Patients With Rheumatoid Arthritis: A Questionnaire Survey REBECCA NEAME, 1 ALISON HAMMOND, 2 AND CHRISTOPHER DEIGHTON 2 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). Conclusion. 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. KEY WORDS. Rheumatoid arthritis; Information need; Decision making. INTRODUCTION Patient empowerment is increasingly advocated (1) and has been associated with better satisfaction (2), concor- dance with treatment (3), and improved health outcomes (4). The process of empowerment includes providing pa- tients with information and involving them in decisions about their treatment. Assessing the need for information about the disease and the level of desire for involvement in treatment decisions is especially important in rheumatoid arthritis (RA) because it is a chronic disease and because patients are usually advised to take potentially toxic dis- ease-modifying antirheumatic drugs (DMARDs) that may be only partially effective. Studies among some medical patient groups have found a high level of need for information (5,6). Provision of RA information booklets and standard drug information sheets to all patients with RA taking DMARDs is now widespread (7). Only 1 previous study has examined cor- relates of need for information among people with RA (8). This survey, carried out in the United States, found that most people with RA want to be fully informed about their prognosis and treatment. Female sex, being employed, and higher educational level were predictors of need for infor- mation. Studies investigating the extent of patient desire for involvement in treatment decisions in other conditions have given different results. A study of patients with can- cer found high levels of desire for participation (5), but a study of patients with hypertension found that 63% wished to leave decision making entirely up to the physi- cian (6). To our knowledge, no studies have investigated preference for involvement in treatment decisions among patients with RA. However, a Norwegian survey of people with RA used a single question to ascertain patients’ per- ception of involvement, and found that around one-third 1 Rebecca Neame, MRCP, MD: King’s Mill Hospital, Notting- hamshire, United Kingdom; 2 Alison Hammond, BSc(Hons), DipCOT, MSc, PhD, Christopher Deighton, MD, FRCP: Der- byshire Royal Infirmary, Derby, United Kingdom. Address correspondence to Rebecca Neame, MRCP, MD, Department of Rheumatology, King’s Mill Hospital, Mans- field Road, Sutton-in-Ashfield, Nottinghamshire NG17 4JL United Kingdom. E-mail: Rebecca.Neame@qmc.nhs.uk. Submitted for publication July 29, 2004; accepted in re- vised form October 4, 2004. Arthritis & Rheumatism (Arthritis Care & Research) Vol. 53, No. 2, April 15, 2005, pp 249 –255 DOI 10.1002/art.21071 © 2005, American College of Rheumatology ORIGINAL ARTICLE 249