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慢性病患儿过渡期准备对其生活质量的影响
Impact of transition readiness on quality of life in children with chronic diseases
目的 调查慢性病患儿生活质量现状，探讨过渡期准备对其生活质量的影响。方法 采用一般资料问卷、儿童生活质量普适性核心量表、过渡期准备问卷对上海市2所儿童医院的332例慢性病患儿过渡期准备和生活质量情况进行调查。结果 患儿生活质量总分为74.66±15.85分，低于全国常模（81.81±12.03分，P < 0.001）。医患沟通、健康责任承担（患儿照护自己的能力以及从儿科到成人科诊治过程的适应）与患儿生活质量各维度得分均呈正相关（P < 0.05）。患儿病程、半年内缺课天数、口服药种类数与生活质量呈负相关（分别rs=-0.172，-0.236，-0.280，均P < 0.05）；家庭所在地（城市/农村）、家庭月收入、父母教育水平、父亲职业对患儿的生活质量有显著影响（P < 0.05）。多元分层回归分析显示，医患沟通、健康责任承担增加了对生活质量总变异14.3%的解释力。结论 慢性病患儿生活质量不容乐观。过渡期准备中医患沟通和健康责任承担能力是影响患儿生活质量的主要因素。
Objective To investigate the current quality of life in children with chronic diseases, and to explore the impact of transition readiness on quality of life.Methods A total of 332 children with chronic diseases from two children's hospitals in Shanghai, China were enrolled. A self-designed demographic questionnaire, Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQLTM4.0), and Self-Management and Transition to Adulthood with Rx=Treatment (STARx) Questionnaire were used to evaluate transition readiness and quality of life.Results The children with chronic diseases had a significantly lower total quality of life score than the national norm (74.66±15.85 vs 81.81±12.03;P<0.001). Doctor-patient communication and health care responsibilities (the child's abilities to take care of himself/herself and adaptation to the process of diagnosis and treatment from childhood to adulthood) were positively correlated with the scores on each dimension of quality of life (P<0.05). Duration of disease, time of absence from school within six months, and the number of types of drugs taken orally were negatively correlated with the total quality of life score (rs=-0.172, -0.236, and -0.280;P<0.05). The residence (urban or rural area), monthly family income, parents' educational level, and father's occupation had significant influence on children's quality of life (P<0.05). The hierarchical multiple regression analysis revealed that doctor-patient communication and health care responsibilities led to a 14.3% increase in the explanation of the total variation in quality of life (P<0.001).Conclusions Quality of life is not satisfactory in children with chronic diseases. Two domains of transition readiness, namely the abilities to communicate with health providers and health care responsibilities, are major factors influencing quality of life in these children.
Chronic disease / Transition readiness / Quality of life / Child
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上海市卫生和计划生育委员会科研基金（201540212）；上海市教委护理高原学科项目-国际合作科研基金（Hlgy1602gj）；上海市教委护理高原学科项目（Hlgy17003yjs）。
