Simon van Genderen1, Guy Plasqui1, Robert Landewé2, Diane Lacaille3, Suzanne Arends4, Floris van Gaalen5, Désirée van der Heijde5, Liesbeth Heuft6, Jolanda Luime7, Anneke Spoorenberg4, Monique Gignac8, Annelies Boonen9. 1. Maastricht University Medical Center, Maastricht, The Netherlands. 2. Amsterdam Medical Center, Amsterdam, The Netherlands. 3. University of British Columbia and Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada. 4. University Medical Center Groningen, University of Groningen, Groningen, The Netherlands, and Medical Center Leeuwarden, Leeuwarden, The Netherlands. 5. Leiden University Medical Center, Leiden, The Netherlands. 6. Sint Laurentius Hospital Roermond, Roermond, The Netherlands, and Sint Jans Gasthuis Weert, Weert, The Netherlands. 7. Erasmus Medical Center Rotterdam, Rotterdam, The Netherlands. 8. Dalla Lana School of Public Health, University of Toronto, and Institute for Work and Health, Toronto, Ontario, Canada. 9. Annelies Boonen, MD, PhD, Maastricht University Medical Center and Caphri Research Institute, Maastricht University, Maastricht, The Netherlands.
Abstract
OBJECTIVE: Participation in social roles for persons with chronic disease is important for their quality of life, but interpretation of the data on participation is difficult in the absence of a benchmark. This study aimed to compare social role participation in patients with ankylosing spondylitis (AS) to population controls using the Social Role Participation Questionnaire (SRPQ). METHODS: There were 246 AS patients and 510 population controls who completed the SRPQ, which assesses participation in 11 roles (with scores ranging 1-5) across 4 dimensions (importance, satisfaction with performance, satisfaction with time, and physical difficulty), and additionally ranked their 3 most important roles. The ranking of role importance, the SRPQ dimension scores, and the gap between importance and satisfaction with performance of roles were compared between patients and controls. RESULTS: Patients (62% male; mean ± SD age 51 ± 12 years) and controls (70% male; mean ± SD 42 ± 15 years) ranked intimate relationships, relationships with children/stepchildren/grandchildren, and employment as the most important roles. Compared to controls, patients gave higher scores on the SRPQ to importance (3.75 versus 3.43), but reported lower satisfaction with performance (3.19 versus 3.58) and greater physical difficulty (3.87 versus 4.67) (P ≤ 0.05 for all). The largest differences in gaps between importance and satisfaction with performance for patients compared to controls were seen in the physical leisure, hobbies, and traveling and vacation categories, in which patients assigned higher importance but reported especially low satisfaction. CONCLUSION: As society places increasing emphasis on individual responsibility to participate fully in social roles, the current data suggest that health care providers should pay more attention to participation restrictions experienced by patients with AS.
OBJECTIVE: Participation in social roles for persons with chronic disease is important for their quality of life, but interpretation of the data on participation is difficult in the absence of a benchmark. This study aimed to compare social role participation in patients with ankylosing spondylitis (AS) to population controls using the Social Role Participation Questionnaire (SRPQ). METHODS: There were 246 AS patients and 510 population controls who completed the SRPQ, which assesses participation in 11 roles (with scores ranging 1-5) across 4 dimensions (importance, satisfaction with performance, satisfaction with time, and physical difficulty), and additionally ranked their 3 most important roles. The ranking of role importance, the SRPQ dimension scores, and the gap between importance and satisfaction with performance of roles were compared between patients and controls. RESULTS:Patients (62% male; mean ± SD age 51 ± 12 years) and controls (70% male; mean ± SD 42 ± 15 years) ranked intimate relationships, relationships with children/stepchildren/grandchildren, and employment as the most important roles. Compared to controls, patients gave higher scores on the SRPQ to importance (3.75 versus 3.43), but reported lower satisfaction with performance (3.19 versus 3.58) and greater physical difficulty (3.87 versus 4.67) (P ≤ 0.05 for all). The largest differences in gaps between importance and satisfaction with performance for patients compared to controls were seen in the physical leisure, hobbies, and traveling and vacation categories, in which patients assigned higher importance but reported especially low satisfaction. CONCLUSION: As society places increasing emphasis on individual responsibility to participate fully in social roles, the current data suggest that health care providers should pay more attention to participation restrictions experienced by patients with AS.
Authors: U Kiltz; J Braun; A Becker; J-F Chenot; M Dreimann; L Hammel; A Heiligenhaus; K-G Hermann; R Klett; D Krause; K-F Kreitner; U Lange; A Lauterbach; W Mau; R Mössner; U Oberschelp; S Philipp; U Pleyer; M Rudwaleit; E Schneider; T L Schulte; J Sieper; A Stallmach; B Swoboda; M Winking Journal: Z Rheumatol Date: 2019-12 Impact factor: 1.372
Authors: Casper Webers; Laura Vanhoof; Simon van Genderen; Liesbeth Heuft; Mart van de Laar; Jolanda Luime; Désirée van der Heijde; Floris A van Gaalen; Anneke Spoorenberg; Annelies Boonen Journal: RMD Open Date: 2018-06-27