What Matters to People in Spondyloarthritis (SpA): Measuring the Importance of Valued Life Activities

PURPOSE: to investigate the impact of ankylosing spondylitis (AS) and psoriatic arthritis (PsA) on a range of valued life activities.
METHODS: Patients attending a specialist clinic were asked to complete a questionnaire presenting domains of committed (e.g. employment, education, relationships with children/grandchildren, intimate relationships) and discretionary (e.g. social, hobbies, leisure, travel) life activities, asking if they were involved in these domains and, if so, whether they perceived involvement in these pursuits as important to them. Importance was rated from 1 (not at all important) to 5 (extremely important). They also completed demographic information (e.g., disease type, duration) and questions assessing functional limitations using the Health Assessment Questionnaire (HAQ)
RESULTS: 44 AS patients (29 males), mean age of 40 years and 65 PsA patients (41 males) average age 53 years responded. Disease duration was 8.5 and 16.6 years for the AS and PsA groups respectively. The mean HAQ scores were 0.61+/- 0.52 (median 0.63) and 0.47+/- 0.52 (median 0.25) for AS and PsA. Of the 14 domains assessing committed and discretionary activities, both the AS and PsA groups engaged in an average of 11 of the 14. Domains that assessed committed activities were engaged in by fewer respondents overall. They were: education (AS 25%, PsA 11%), employment (AS 70%, PsA 63%), close relationships (AS 73%, PsA 79%), children/grandchildren (AS 40%, PsA 63%). Importance ratings were skewed towards greater importance with the mean ranging from 2.8 to 4.6 for the AS group and 2.4 to 4.5 for the PsA group. Importance ratings were similar for committed and discretionary activities. Relationships and travel were most important mean > 4): community involvement and education pursuits least important (mean (≤3) for both groups. Greater HAQ disability was not associated with participation in fewer valued activities.
CONCLUSIONS: The findings for AS and PsA are similar. Irrespective of functional level, patients with these conditions are engaged in a wide range of valued life activities. This study points to the importance of outcomes beyond the conventional measures of symptoms, function, and employment. In order to fully capture the impact of SpA a more comprehensive measure of participation is required which captures impact on relationships and social and leisure pursuits.

 A. Davis, None; M. Palaganas, None; E. Badley, None; R. Inman, None; D. Gladman, None; M. Gignac, None.