Shanquan Chen1, Yuqi Wang2, Liling Zhu3, Yong Gan4, Dong Dong5. 1. Department of Psychiatry, University of Cambridge, Cambridge, CB2 0SZ, UK. 2. Department of Mathematics, Imperial College London, London, SW7 2BX, UK. 3. Jockey Club School of Public Health and Primary Care, Chinese University of Hong Kong, Hong Kong, China. 4. Department of Social Medicine and Health Management, School of Public Health, Tongji Medical College, Huazhong University of Science and Technology, Wuhan, 430030, China. 5. Jockey Club School of Public Health and Primary Care, Chinese University of Hong Kong, Hong Kong, China. dongdong@cuhk.edu.hk.
Abstract
OBJECTIVE: To explore the factors associated with the psychosocial quality of life (QoL) among adolescents with rare diseases (RDs). METHODS: 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. RESULTS: 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. CONCLUSION: 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.
OBJECTIVE: To explore the factors associated with the psychosocial quality of life (QoL) among adolescents with rare diseases (RDs). METHODS: 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. RESULTS: 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. CONCLUSION: 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.