Facing the challenge of rheumatoid arthritis : A 13-year prospective study among patients and cross-sectional study among partners.

Differences in physical, psychological and social outcomes between rheumatoid arthritis patients of the same age with similar disease severity are frequently observed and cannot be explained by disease-related factors alone. Medical sociologists suggest that this intra-individual variation can be explained by other factors next to disease-related factors, such as psychological and social factors. This research examines the contribution of disease-related, psychological and social factors in explaining individual differences in outcomes. The aim of the study is 1) the investigation of the pattern, pace and direction of the pathway from disease to disability and subjective well-being and 2) to describe the effect of the disease process on the patient’s partner as well as the interaction between the patient’s and partner’s functioning on each others well-being. These research questions are examined with longitudinal data from the international project EUropean Research on Incapacitating DIseases and Social Support (EURIDISS) collected among rheumatoid arthritis patients in the Netherlands and with cross-sectional data collected among their partners. The course of the clinical status and functional disability of patients remained relatively stable during the first years of the disease. In long-term RA we did find deterioration in functional disability and a decrease in transactions of support. Although patients reported fewer transactions over the years, they remained highly satisfied with this. Disability is often found to cause distress, but this may become less over time since patients learn to cope more effectively. Our results showed that patients were able to maintain a normal distress level and that the effect of the disease on distress decreased during these years. In short-term RA, social support played an important role in counteracting the influence of disability on distress. Based on the disability frameworks, we focused on the main pathway from pathology to disability and the influence of sociodemographic characteristics, distress and social support. The results confirm the main pathway from pathology to disability, but do not provide support for the influence of distress and social support on the disablement process. A model based on the Theory of Planned Behavior was developed, in which partner support, attitude and self-efficacy are determinants of intention, and intention and self-efficacy are determinants of self-management behavior. The present study provided moderate support for the use of the constructs and ideas derived from the theory of planned behavior in predicting and explaining self-management. Guided by Pearlin et al.’s (59;69) construct of stress proliferation, we were able to distinguish some primary and secondary stressor which caused distress in patients and their partners. Patients are primarily distressed as a result of their disability, and partners primarily as a result of the experienced burden and secondly as a result of the perceived negative transactions and marital quality. Our study showed some support that intra-individual variation in physical and psychological outcomes can be explained by other factors next to disease-related factors, such as psychological and social factors. More knowledge on these effects may have important implications for interventions aimed to slow down the disablement process and development of distress. More knowledge on how patient and partner influence each other’s distress is needed to develop psychosocial interventions that will help patient and partner minimize their psychological distress and prevent deterioration of their marital quality.