Department of Psychiatry, University of Cambridge, Cambridge, CB2 0SZ, UK.
Department of Mathematics, Imperial College London, London, SW7 2BX, UK.
Soc Psychiatry Psychiatr Epidemiol. 2022 Aug;57(8):1723-1726. doi: 10.1007/s00127-022-02286-y. Epub 2022 Apr 11.
To explore the factors associated with the psychosocial quality of life (QoL) among adolescents with rare diseases (RDs).
We used cross-sectional design to collect data in February 2016 and February 2018, respectively, in China through a structured questionnaire. Those included in the study were adolescents aged between 10 and 18 who had a doctor-diagnosed RD. Multivariable linear regression was used to identify the predictors associated with psychosocial QoL among adolescents with RDs.
The study included 737 adolescents (28.4% girls). The mean score of their psychological QoL was 43.79 (SD = 20.44). Multivariable linear regression analysis suggests that girls had a lower psychological QoL than boys (adjusted coefficient = -1.87, 95% CI = [-3.53, -0.21]); and receiving an education (adjusted coefficient = 6.53, 95% CI = [4.47, 8.33]), living with parents (adjusted coefficient = 6.45, 95% CI = [3.94, 8.97]), and physical function (adjusted coefficient = 0.53, 95% CI = [0.49, 0.56]) were positively associated with psychological QoL.
This study reveals the status of psychological QoL among adolescents with RDs. The evidence provided can increase our understanding of the factors associated with psychological QoL among adolescents with RDs and can help formulate policies and put concrete actions into practice.
探讨罕见病青少年的社会心理生活质量（QoL）的相关因素。
本研究于 2016 年 2 月和 2018 年 2 月采用横断面设计，通过结构问卷分别在中国收集数据。研究对象为年龄在 10 至 18 岁之间、经医生诊断患有罕见病的青少年。采用多变量线性回归分析鉴定与罕见病青少年社会心理 QoL 相关的预测因子。
本研究纳入 737 名青少年（28.4%为女孩）。他们的心理 QoL 平均得分为 43.79（SD=20.44）。多变量线性回归分析表明，女孩的心理 QoL 低于男孩（调整系数=-1.87，95%CI：-3.53，-0.21）；接受教育（调整系数=6.53，95%CI：4.47，8.33）、与父母同住（调整系数=6.45，95%CI：3.94，8.97）和身体功能（调整系数=0.53，95%CI：0.49，0.56）与心理 QoL 呈正相关。
本研究揭示了罕见病青少年心理 QoL 的现状。研究结果可以帮助我们更好地理解罕见病青少年心理 QoL 的相关因素，并有助于制定政策和采取具体行动。
