【摘要】 目的了解孤独症儿童的健康相关生存质量及其影响因素,为提高孤独症儿童的生存质量提供思路。方法以152例健康儿童为对照组,99例孤独症儿童为病例组,采用世界卫生组织生存质量调查表简表(WHOQOL-BREF)和社会支持评定量表(SSRS)对其监护人进行问卷调查,获得两组儿童的相关数据。结果对照组儿童的客观支持、主观支持和对社会支持利用度的评分以及社会支持总评分分别为(27.78±4.77)、(6.86±4.90)、(7.75±1.79)和(42.40±6.93)分,而病例组儿童分别为(22.12±5.55)、(4.91±2.16)、(7.10±1.85)和(34.13±8.07)分,差异均有统计学意义(P<0.05)。与对照组儿童健康相关生存质量的客观标准评分(70.08±11.09)和主观评分(88.59±6.55)相比,病例组儿童健康相关生存质量的客观标准评分(54.20±11.87)和主观评分(52.69±18.64)降低,差异均有统计学意义(P<0.05)。孤独症儿童健康相关生存质量与疾病严重程度的相关系数为-0.317(P<0.05)。社会支持总评分(β=0.25)、家庭每月最高收入(β=0.14)、母亲学历(β=0.15)、孩子出生时母亲年龄(β=0.30)和每天陪伴孩子时间(β=0.21)是孤独症儿童健康相关生存质量的影响因素(P<0.05)。结论孤独症儿童的客观支持、主观支持和对社会支持利用度的评分以及社会支持总评分均低于健康儿童。孤独症儿童健康相关生存质量的客观标准评分、主观评分均低于健康儿童,其影响因素为疾病的严重程度、社会支持、家庭每月最高收入、母亲学历、孩子出生时母亲年龄和每天陪伴孩子时间。更多还原

【Abstract】 Objective To investigate the health related quality of life and its influencing factors in autistic children,so as to provide a thinking on improving their quality of life. Methods Totally 152 normal children and 99 autistic children were enrolled,accepted our questionnaire by the WHO Quality of Life Brief Scale( WHOQOL- BREF) and Social Support Rating Scale( SSRS) were used to conduct questionnaire survey among their caregivers for collecting the relative data of the children. Results The scores of subjective support,objective support,social support availability and total score of social support in normal children were( 27. 78 ± 4. 77),( 6. 86 ± 4. 90),( 7. 75 ± 1. 79),( 42. 40 ± 6. 93),respectively,and those of autistic children were( 22. 12 ± 5. 55),( 4. 91 ± 2. 16),( 7. 10 ± 1. 85),( 34. 13 ± 8. 07),respectively,the differences between the two groups were statistically significant( P < 0. 05). The objective standard score and subjective score for health related quality of life in autistic children were significantly lower than those in normal children’ s 〔( 70. 08 ± 11. 09) vs.( 54. 20 ± 11. 87);( 88. 59 ±6. 55) vs.( 52. 69 ±18. 64) 〕( P <0. 05). The correlation coefficient between autistic children’s the health related quality of life and the severity of disease in autistic children was- 0. 317( P < 0. 05). The total score of social support( β =0. 25),highest income of family every month( β = 0. 14),mother’ s education( β = 0. 15),mother’ s age at the birth of their children( β = 0. 30),and time together with the child every day( β = 0. 21) were the significant impacting factors to quality of life of autistic children( P < 0. 05). Conclusion The scores of subjective support,objective support,social support availability and the total score of social support in autistic children are lower than those in normal children. The objective standard score and subjective score for health related quality of life in autistic children are lower than those in normal children,and the impacting factors to quality of life of autistic children are the severity of disease,social support,highest income of family every month,mother’s education,mother’s age at the birth of their children and time together with the child every day.更多还原