中国重庆特发性中枢性性早熟儿童的家庭影响与健康相关生活质量之间的关联。
The association between family impact and health-related quality of life of children with idiopathic central precocious puberty in Chongqing, China.
作者信息
Yang Hong, Luo Shunqing, Liang Xiaohua, Lin Qin, Cheng Ting, Zeng Li, Tang Fang, Wu Di
机构信息
Department of General Medicine, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing Key Laboratory of Pediatrics, Children's Hospital of Chongqing Medical University, Jinyu Avenue No. 20, Yubei, Chongqing, 400010, China.
Clinical Epidemiology and Biostatistics Department, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing Key Laboratory of Pediatrics, China International Science and Technology Cooperation Center of Child Development and Critical Disorders, Children's Hospital of Chongqing Medical University, Zhongshan 2nd Road No. 136, Yuzhong, Chongqing, 400016, China.
出版信息
Health Qual Life Outcomes. 2021 Jun 26;19(1):171. doi: 10.1186/s12955-021-01805-w.
BACKGROUND
Idiopathic central precocious puberty (ICPP) reduces patient health-related quality of life (HRQoL). The impacts of disease and treatment on families are also an important concern. This study aimed to assess the association between family impact and HRQoL of children with ICPP.
METHODS
We conducted a case-control study in Chongqing, China. A case group of 134 children with ICPP aged 5-12 years and their caregivers was recruited from a children's hospital in Chongqing. A total of 210 gender- and age-matched subjects from two primary schools were selected as controls. PedsQL4.0 Generic Core Scales (GCS) and PedsQL™ Family Impact Module (FIM) were used in this study.
RESULTS
Children with ICPP scored lower than controls in all HRQoL domains except physical functioning. In particular, the two groups were significantly different in emotional functioning scores (d = 0.414, P < 0.001). Compared with controls, ICPP families had lower scores in all dimensions of the FIM scale (d = 0.288-1.030, all P < 0.05). Factors associated with HRQoL of ICPP patients included: age of patients, type of medical treatment, employment status of caregivers, educational level of caregivers, parent HRQoL and family functioning (all P < 0.05).
CONCLUSIONS
Children with ICPP demonstrated lower quality of life and greater family impact compared to healthy controls. In addition, less impact of disease on parent HRQoL and family functioning was associated with better HRQoL of ICPP patients, patients aged older, treated with drug combination, cared by employed or well-educated caregivers reported better HRQoL. Health care professionals should pay more attention to younger patients treated with GnRHa alone, and provide targeted interventions for caregivers depending on their demographic background to reduce family impact and thereby improve patient HRQoL.
背景
特发性中枢性性早熟（ICPP）会降低患者与健康相关的生活质量（HRQoL）。疾病及治疗对家庭的影响也是一个重要关注点。本研究旨在评估ICPP患儿的家庭影响与HRQoL之间的关联。
方法
我们在中国重庆开展了一项病例对照研究。从重庆一家儿童医院招募了134名年龄在5至12岁的ICPP患儿及其照料者作为病例组。从两所小学选取了210名性别和年龄匹配的受试者作为对照组。本研究使用了儿童生活质量量表4.0通用核心量表（GCS）和儿童生活质量量表家庭影响模块（FIM）。
结果
除身体功能外，ICPP患儿在所有HRQoL领域的得分均低于对照组。特别是，两组在情感功能得分上存在显著差异（d = 0.414，P < 0.001）。与对照组相比，ICPP患儿家庭在FIM量表的所有维度上得分更低（d = 0.288 - 1.030，均P < 0.05）。与ICPP患者HRQoL相关的因素包括：患者年龄、治疗类型、照料者就业状况、照料者教育水平、父母HRQoL和家庭功能（均P < 0.05）。
结论
与健康对照组相比，ICPP患儿的生活质量较低，家庭影响更大。此外，疾病对父母HRQoL和家庭功能的影响较小与ICPP患者更好的HRQoL相关，年龄较大、接受联合药物治疗、由有工作或受过良好教育的照料者照料的患者HRQoL更好。医护人员应更多关注仅接受促性腺激素释放激素类似物（GnRHa）治疗的年轻患者，并根据照料者的人口统计学背景提供针对性干预，以减少家庭影响，从而改善患者的HRQoL。
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