Rheumatoid arthritis - patient perception of disease, care, quality of life, coping and well-being : a study from a Swedish health care district

Abstract: During the past decades, the focus of outcome studies in chronic diseases such as rheumatoid arthritis (RA) has changed from a technical and biological preoccupation towards a more patient-concemed psychosocial perspective. The changing paradigm of chronic disease impact has been conceptualised in a number of self-report health status and outcome measurements that have been called 11one of the primary achievements of rheumatology in the 1980s". The overall aim of the study was to make a broad elucidation of the perceived selfMreported impact of rheumatoid arthritis in a representative group of individuals from a health care district, with regard to treatment and care, quality oflife, coping and well-being.A total of 321 patients from a health care district in the northern part of Kalmar county, Sweden, with both early/mild and more severe disease were enrolled in the first part of the study, in which the medical records of these individuals were scrutinised for information about previous treatment and care. In the second part of the study, 222 of the initial 321 persons participated in an extensive postal survey exploring perceived impact of RA by self-report.The uncertain outcome of RA disease was emphasised by a high frequency of discontinuations of drug therapy due to lack of effect or side-effects. Underlining the lack of a medical cure for RA, more than 40% of the individuals had undergone some kind of surgical procedure due to the disease. The rehabilitation services to individuals with RA appear to be functioning fairly adequately since those still working were employed in administrative work rather than in production. The participants indicated a preference for a good reception by health care workers rather than technically correct care. Only a minority of the patients who had been treated as in-patients felt that they had been involved in the planning of the care. Also, the physicians seemed to underestimate the patients desire for information concerning both medical and social aspects of the disease.Quality of life scores exhibited a change for the worse with increasing self-reported functional disability. Physical, psychological and social life domains were fairly highly interrelated and all revealed lower levels with increasing self-reported functional disability. Also, lower levels of well-being were closely associated with a more severe RA disease, in particular loneliness, indolence, tension, security, future-orientation and endurance. Coping and wellMbeing were only weakly interrelated, but individuals who declared an active lifostyle exhibited a better well-being with a higher basic mood, greater fotureorientation and less indolence, loneliness and inferiority. Individuals accepting the RA disease displayed less guilt and tension, and greater endurance and basic mood.The study depicts how individuals with RA in a health care district are provided with both the basic treatment and more specialised care in a collaboration between medical and surgical specialists. In general, satisfaction with the care provided was more closely related with clinical signs rather than self-reported functional performance, although the latter might more adequately reflect the perceived need of the patients. Thus, the results support the application of self-reported functional disability assessment in routine clinical rheumatological practice. The study displays methods that measure and quantify the increasing negative psychosocial impact of RA with increasing functional disability. Some evidence was also found supporting the inclusion of coping enhancement elements in health care programmes targeting patients with RA. Consequently, the inclusion of counselling enhancing acceptance of the RA and encouraging decisions about new relevant goals might, at least theoretically, increase well-being in patients with RA.