Leisure Activities in Rheumatoid Arthritis. Associated Factors and Assessment
Sammanfattning: Leisure Activities in Rheumatoid Arthritis. Associated Factors and Assessment. Leisure activities were considered to give intrinsic pleasure, meaning and value to life already in ancient Greek. It was also performed for its own sake and not by consideration of any external rewards. In the beginning of the 20th century leisure was only possible for wealthy people who could occupy themselves with non-productive consumption of time. It was not until the middle of the 20th century that leisure got more accepted and not seen as an undesirable activity. Participating in leisure activities may prevent from isolation, and give better self-confidence. To be forced to abandon the most important leisure activity may lead to depression. In literature, patients with rheumatoid arthritis (RA) are described as having difficulties in performing leisure activities, and that they quite often change their leisure activities to those of a more sedentary nature, while trying to overcome the obstacles of the disease. Leisure activities quite often lose their value, as they are often diminished then experienced as being difficult to perform. The overall purpose of this thesis was to investigate the perception of leisure activities in patients with RA and to search for associable factors and predictors. Another objective was to validate a new leisure index, namely the Patient-Specific Leisure Scale (PSLS). The first study is a prospective study and includes 80 patients with RA who had participated in a three-week rehabilitation programme. The number of leisure activities was assessed through a structured interview. At follow-up Norling´s index was also used. This is an interest check list which lists 18 domains of leisure activities for which the patients can indicate performance and interest. ?Active? and ?not obviously active or passive? leisure activity according to Norling´s index were investigated together with Health Assessment Questionnaire (HAQ), Signals of Functional Impairment (SOFI), grip strength, Quality of Life Scales (QOLS), the Hospital Anxiety and Depression Scale (HADS), Coping Strategies Questionnaire (CSQ), global pain (visual-analogue scale (VAS)), global assessment of disease activity (VAS), C- reactive protein (CRP), erythrocyte sedimentation rate (ESR) and medication as possible predictors. It was found that ?active? leisure activity had increased, and ?not obviously active or passive? leisure activities were unchanged. The number of ?active? leisure activity was moderately associated with SOFI and HAQ at baseline. Activity were not predicted by socio-demographic variables or variables reflecting disease activity at baseline or during the follow-up period. Depression and the coping strategies self-statement, ignoring sensation and increasing activities were weakly but not significantly correlated to leisure activities. Anxiety did not correlate with performance of leisure activities. Active recreation was one of the most affected domains of QOLS. The second study was a qualitative study using semi-structured interviews to explore the impact of RA on leisure pursuits in 18 strategically chosen patients with RA. Three descriptive categories were found, namely constraints containing four conceptions: experiencing limitations, needing time, finding a balance, and being dependent. Coherence containing four conceptions: accepting feelings, participating in a social context, being active, and having insight. Solutions containing three conceptions: choosing, planning, and adapting. Patients with RA experienced restrictions when performing leisure activities due to constraints and coherence but they tried to find solutions to their problems. The third study is a prospective, controlled study of 196 newly diagnosed patients with RA. One hundred and forty-seven patients were followed longitudinally, and 144 had a matched control from the Swedish population census register at baseline. The following variables were measured at baseline, after 6,12,18,24,36, 60 months and follow-up in RA patients VAS-pain, VAS global assessment, ESR, CRP, rheumatoid factor (RF), swollen and tender joints out of 28, the medical practitioner's judgement of disease activity, and disease activity score (DAS28). The following measures were performed both in RA and control group, HAQ, education, occupation, and NPS-index. Patients with RA diagnosed at an early stage performed fewer leisure activities compared to controls, a difference observed only among persons with low level of education. Factors independently associated and partially correlated with the number of leisure activities domains performed at baseline were age, education, HAQ, and the number of domains interested in. No change on group level was seen during follow-up, but domains of leisure activities changed during follow up and activities performed in outdoor life and exercise in individual sports increased significantly in women. Patients both stopped and started a substantial number of leisure activities on an individual level. The severity of the disease did not at all predict these individual changes at all, although the accumulated burden of disability during follow up tended to. Active recreation beside health was one of the most affected domains of QOLS. In the fourth study a new leisure index the PSLS were evaluated regarding reliability, validity and responsiveness. Forty-nine consecutive RA patients participated in test-retest, 100 RA-patients in construct validity and 25 RA-patients in responsiveness (after three months of TNF inhibitors). The PSLS appeared to be feasible, reliable, valid and responsive for measuring leisure activities. I found in these four studies that commonly used variables for measuring disease activity did not predict change in leisure activities, and that disability only moderately predicts such change. Other predictors must be sought, perhaps more related to personality and individual resources. I also found that patients with RA experienced restrictions when performing leisure activities due to constraint and coherence but that they tried to find solutions to their problems. The PSLS seems reliable and valid for measuring leisure activities among patients with RA. Active recreation beside health was one of the most affected domains of QOLS.
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