Disease impact and quality of life in rheumatic diseases

Abstract: Patients with rheumatic diseases are restrained in their activities of daily living by pain, fatigue and decreased mobility and range of motion. Even with equal severity and activity of disease the perceived health status and quality of life may differ. Additional factors such as; age, psychological wellbeing, educational level and the ability to cope with the circumstances influence the quality of life.Aim: The aim of this thesis was to obtain further knowledge about the impact of rheumatic disease on health status and quality of life and to introduce and evaluate measures appropriate for this purpose.Methods: All patients participating in the studies were selected from the register of the Department of Rheumatology, Sahlgrenska University Hospital, Göteborg, Sweden. The different studies involved patients with rheumatoid arthritis (RA), systemic lupus erythematosus (SLE) and young adults with rheumatic disease onset before (juvenile arthritis) (JA) and after (early adult) (EA) 16 years of age, respectively. The young adult groups were compared to an age and gender matched non-rheumatic group from the general population. The reliability and validity was evaluated in self-administered questionnaires, the Arthritis Impact Measurement Scales (AIMS, AIMS2) and the Quality of Life Scale (QOLS). Comparison of quality of life was made between females with SLE and RA. Predicting factors for quality of life were identified. The qualitative aspects of quality of life were performed by a telephone-interview. The young adults responded to questionnaires regarding health status, quality of life, educational level as well as the impact of arthritis on education and choice of profession. Results: Satisfactory reliability and validity were found for the AIMS2 and the QOLS. We found no evidence for sensitivity to change in AIMS from a short-term hand training program. However, the AIMS2 showed satisfactory sensitivity to change in a long-term outcome study of DMARD treatment. No significant differences were found with regard to quality of life (QOLS) between females with SLE or RA. Both groups were less satisfied with health and physical activities. Predicting factors for quality of life were psychological function and global impact in the AIMS. However, the quality of life interview study revealed that SLE patients appreciated security and control of their situation, whereas females with RA found independence to be most important to their quality of life. Young adults with rheumatic disease onset after 16 years of age (EA) had lower level of education than a reference group from the general population.Conclusions: The Swedish versions of the Arthritis Impact Measurement Scales (AIMS2) and Quality of Life Scale (QOLS) are suitable for self-rating of health status and quality of life in rheumatic diseases. Females with SLE or RA perceive good quality of life but value different domains of it. Rehabilitation of young adults with rheumatic diseases needs to put education and choice of profession in focus at an early phase.