van Genderen Simon, Plasqui Guy, Landewé Robert, Lacaille Diane, Arends Suzanne, van Gaalen Floris, van der Heijde Désirée, Heuft Liesbeth, Luime Jolanda, Spoorenberg Anneke, Gignac Monique, Boonen Annelies
Maastricht University Medical Center, Maastricht, The Netherlands.
Amsterdam Medical Center, Amsterdam, The Netherlands.
Arthritis Care Res (Hoboken). 2016 Dec;68(12):1899-1905. doi: 10.1002/acr.22907. Epub 2016 Oct 28.
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).
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.
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.
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.
参与社会角色对慢性病患者的生活质量很重要,但在缺乏基准的情况下,对参与数据的解读很困难。本研究旨在使用社会角色参与问卷(SRPQ)比较强直性脊柱炎(AS)患者与普通人群在社会角色参与方面的情况。
246例AS患者和510名普通人群完成了SRPQ,该问卷评估了在4个维度(重要性、对表现的满意度、对时间的满意度和身体困难程度)中参与11种角色的情况(得分范围为1 - 5),并额外对他们最重要的3种角色进行了排序。比较了患者和对照组在角色重要性排名、SRPQ维度得分以及角色重要性与对表现的满意度之间的差距。
患者(62%为男性;平均±标准差年龄51±12岁)和对照组(70%为男性;平均±标准差42±15岁)将亲密关系、与子女/继子女/孙子女的关系以及就业列为最重要的角色。与对照组相比,患者在SRPQ中对重要性的得分更高(3.75对3.43),但对表现的满意度较低(3.19对3.58),身体困难程度更大(3.87对4.67)(所有P≤0.05)。与对照组相比,患者在身体休闲、爱好以及旅行和度假类别中,重要性与对表现的满意度之间的差距差异最大,患者赋予这些角色更高的重要性,但报告的满意度特别低。
随着社会越来越强调个人有责任充分参与社会角色,目前的数据表明医疗保健提供者应更多关注AS患者所经历的参与限制。