目的 探讨苯丙酮尿症(phenylketonuria,PKU)患儿家长心理健康水平与患儿饮食治疗依从性关系。 方法 调查分析持续治疗的63例PKU患儿家长的心理健康水平与患儿治疗随访过程中苯丙氨酸浓度、随访周期。PKU患儿家长的心理健康水平采用SCL-90自评心理症状量表、抑郁自评量表(Self-Rating Depression Scale,SDS)、焦虑自评量表(Self-Rating Anxiety Scale,SAS)进行自评,按心理症状因子分统计分成I、II组,并自制一般情况问卷调查。选取儿保科健康查体幼儿家长作为对照组。结果 1)PKU患儿家长的心理健康水平显著低于对照组(除外恐惧、人际敏感因子t值均＞2.78,P值均＜0.01);2)PKU患儿家长的心理健康水平I组低于II组,I组心理症状因子分均高于II组(除外恐惧因子t值均＞4.084,P＜0.01);3)I组患儿苯丙氨酸浓度控制好于II组(χ²=29.866,P＜0.01),随访周期短(t=3.535,P＜0.01),显示良好饮食治疗依从性;4)I组、II组中PKU患儿家长其文化程度、对疾病的认知度差异均有高度统计学意义(χ²=13.445,9.718,P均＜0.01)。 结论PKU患儿饮食治疗依从性较好的家长心理健康水平较低;患儿饮食治疗依从性与家长的家庭收入、文化程度、对疾病的认知度等有关。要提高患儿饮食治疗依从性,确保智力正常发育,家长是关键。

Objective To analyze the relationship between mental health in parents and dietary treatment for children with phenylketonuria(PKU),in order to find measures of improving compliance with diet therapy. Methods The Symptom Checklist 90(SCL-90),Self-Rating Depression Scale(SDS)and Self-Rating Anxiety Scale(SAS)were used to assess the mental health levels of parents with PKU children among 63 people whose children were diagnosed and treated continuously in neonatal screening center of Taian,and to survey the concentration of phenylalanine,follow-up period during follow-up treatment.Under the investigation on mental health of parents with PKU children,the factor scores were divided into I,II groups,and made general questionnaire.The normal people whose children were checked in child healthcare department were taken as control. Results 1)The mental health levels of parents with PKU children were significantly lower than those of control group(t＞2.78,P＜0.01,except fear and interpersonal sensitivity factors).2)The mental health levels of parents with PKU children in group Ⅰ were significantly lower than those of Ⅱ(χ²>4.084,P<0.01,except fear factor).3)The control to concentration of phenylalanine in group I was better than that of II (χ²=29.866,P＜0.01),follow-up period was shorter(t=3.535,P＜0.01),this showed a good diet treatment compliance;4)There were significant differences in the educational level and the knowledge level about disease between group I and group II(χ²=13.445,9.718,P＜0.01).Conclusion The partents with lower mental health has better dietary treatment compliance,the compliance relates to parents' income,the educational level and the knowledge level.The parents are the key to imporve dietary treatment compliance and make normal development of intelligence