Pain and its relation to participation in valued activities in rheumatoid arthritis

There has been a dramatic change over the past two decades for persons with rheumatoid arthritis (RA) not only due to early diagnosis, structured treatment, and aggressive medication but also due to an increased demand of participation in work life and society. Despite these treatment changes, RA continues to impact these individuals’ participation in valued daily activities. Participation in valued daily activities provides wellbeing and the opportunity for engagement and participation. By persons with RA pain has been highlighted as one of the most restrictive symptoms. This thesis uses the International Classification of Functioning, Disability, and Health (ICF) as a conceptual framework to describe disability and how participation is related to pain. Aims: The overall aim of this thesis was to explore and describe the relationship between pain and participation in valued activities, in RA. Paper I compared pain and activity limitations in women and men with contemporary treated early RA with persons who were diagnosed ten years earlier. Paper II described experiences of pain and pain’s relationship with daily activities. Paper III examined difficulties performing valued life activities in relation to pain intensity. Paper IV described personal factors, including self-efficacy and pain acceptance, and studied whether personal factors are mediators of the relationbetween pain and performance of valued life activities. Methods: Different methodological approaches were used to provide a comprehensive understanding of pain and participation in valued activities in persons with RA. A prospective longitudinal cohort study was used to compare women and men treated with contemporary treated RA (n=276) with their counterparts ten years earlier (n=373) (Paper I). This study was followed by a focus group study where 33 persons with RA participated in seven focus groups (Paper II). Subsequently, Papers III and IV were conducted based on data from The Swedish Rheumatology Quality Registry (SRQ) and data from a postal questionnaire that gathered data on demographics, pain, personal factors, and participation in valued life activities (n=737). In addition, these studies used descriptive and analytical statistics with multiple regression and structural equation modelling (SEM). Results: Pain and activity limitations were still pronounced in women and men with RA despite recent treatment advances (Paper I). The relationship between participation and pain was dynamic and is related to fatigue, stress, and mood, factors that generated difficulties finding a suitable level of activity, resulting in difficulties balancing daily activities (Paper II). Both women and men reported restrictions in participation in valued life activities. Pain was identified as having an important relationship to difficulties performing valued life activities (Paper III). Personal factors were found important as mediators for pain in relation to participation (Paper IV). Conclusions: This thesis found a continued need for multidisciplinary interventions despite current treatments. Pain was identified as related to participation restrictions and had an important relationship to difficulties performing valued life activities. Pain and participation in valued activities needs to be comprehensively analysed and treated in the context of the person’s perspective and needs and demands of persons with RA. The subjective experience of participation, the engagement, must be highlighted. Personal factors mediated the relationship between pain and participation and this finding supports the value of self-management interventions to enable participation in valued activitie