Chen Shanquan, Wang Yuqi, Zhu Liling, Feng Zhanchun, Gong Shiwei, Dong Dong
Department of Psychiatry, University of Cambridge, Cambridge, United Kingdom.
Department of Mathematics, Imperial College London, London, United Kingdom.
J Psychiatr Res. 2022 Jun;150:147-152. doi: 10.1016/j.jpsychires.2022.03.042. Epub 2022 Mar 28.
Considerable proportion of people with rare diseases (RDs) have suffered from severe mental health problems. However, specific attention on the psychological quality of life (QoL) of people with RDs is sparse. Evidence documented the benefits of social support and social activity on recipients' mental health and overall QoL, but no corresponding study answered how both social support and social activity work on the psychological QoL among people with RDs. This study aims to report the psychological QoL and evaluate the mediating role of social activity between social support and psychological QoL among people with RDs.
Data were from two national repetitive cross-sectional surveys, conducted in China in February 2016 and February 2018. In this study, eligible people were those aged 18 or above and had clinical-diagnosed RDs. Psychological QoL was measured by the subdomain of World Health Organization Quality of Life: Brief Version. Social support was measured by the Medical Outcomes Study Social Support Survey. Social activity was measured with seven items selected from the measurement on leisure activities used by the Chinese General Social Survey. Using the mediation model, we assessed the direct and indirect (via social activity) association between social support and psychological QoL, both on overall and subtypes of RDs. We controlled for a variety of potential socioeconomic and demographic confounding factors.
Of the 2403 adults studied, their average score of psychological QoL was 42.49 out of 100. The psychological QoL was directly associated with received emotional/information support (coefficient = 0.159, 95% CI = [0.093, 0.231], p < 0.0001) and positive social interaction (coefficient = 0.159, 95% CI = [0.097, 0.221], p < 0.0001). The psychological QoL was indirectly (via social activity) associated with received tangible support (coefficient = -0.035, 95% CI = [-0.046, -0.025], p < 0.0001) and positive social interaction (coefficient = 0.056, 95% CI = [0.040, 0.074], p < 0.0001). Above results by subtypes of RDs were also reported.
The causal inference was not able to be investigated due to the cross-sectional study design.
People with RDs suffered from a low psychological QoL. Social activity mediated the association between social support and psychological QoL, but its mediating role depended on the subscales of social support as well as the subtypes of RDs. Customized measures based on the type of RDs and support that will be provided could perhaps improve the psychological QoL of people with RDs directly and indirectly.
相当一部分罕见病患者患有严重的心理健康问题。然而，对罕见病患者心理生活质量（QoL）的具体关注却很少。有证据表明社会支持和社会活动对受助者的心理健康和总体生活质量有益，但尚无相应研究探讨社会支持和社会活动如何影响罕见病患者的心理生活质量。本研究旨在报告罕见病患者的心理生活质量，并评估社会活动在社会支持与罕见病患者心理生活质量之间的中介作用。
数据来自2016年2月和2018年2月在中国进行的两项全国性重复横断面调查。在本研究中，符合条件的人群为年龄在18岁及以上且临床诊断为罕见病的患者。心理生活质量通过世界卫生组织生活质量简表的子领域进行测量。社会支持通过医学结局研究社会支持调查进行测量。社会活动通过从中国综合社会调查所使用的休闲活动测量中选取的七个项目进行测量。使用中介模型，我们评估了社会支持与心理生活质量之间的直接和间接（通过社会活动）关联，包括总体罕见病和罕见病亚型。我们控制了各种潜在的社会经济和人口混杂因素。
在研究的2403名成年人中，他们的心理生活质量平均得分为42.49（满分100分）。心理生活质量与获得的情感/信息支持直接相关（系数 = 0.159，95%置信区间 = [0.093, 0.231]，p < 0.0001）和积极的社会互动直接相关（系数 = 0.159，95%置信区间 = [0.09
