儿童血友病家庭治疗需求及影响因素的调查分析

Survey and analysis of family treatment needs and influencing factors for hemophilia in children

目的调查儿童血友病家庭治疗需求现况,并分析其影响因素。方法采用方便抽样法,选取2023年6-7月在血友之家(web.bjxueyou.cn)登记在册的血友病患儿家长为研究对象,以手机短信推送电子问卷的形式进行调查,分析儿童血友病家庭治疗需求及影响因素。结果共430例血友病患儿家长填写问卷,回收有效问卷409份,有效回收率为95.12%。家庭治疗需求中,血友病患儿急救管理需求389例(95.11%),疼痛管理需求386例(94.38%),出血健康教育需求383例(93.64%),血管保护需求382例(93.40%),血友病患儿疾病及治疗相关记录需求380例(92.91%),血友病患儿心理护理需求375例(91.69%),家庭治疗基础知识需求369例(90.22%),自我注射相关操作需求362例(88.51%),日常生活指导需求360例(88.02%)。多因素logistic回归分析结果显示,家庭月收入10000~<15000元(OR=4.297)、家庭月收入≥15000元(OR=12.698)、疾病严重程度为重度(OR=3.609)是儿童血友病家庭治疗需求的正向促进因素(P<0.05),父母文化程度为本科及以上(OR=0.186)、给药工具为经外周静脉穿刺中心静脉置管术(PICC)或输液港(OR=0.113)是儿童血友病家庭治疗需求的负向干预因素(P<0.05)。结论血友病患儿家庭治疗需求较高,要依据不同患儿的家庭特征进行定向健康教育,以提高家庭治疗水平。

Objective To investigate the status quo of family treatment needs of hemophilia in children,and analyze its influencing factors.Methods The convenience sampling method was adopted.The parents of children patients with hemophilia registered on the xueyou website(web.bjxueyou.cn)from June to July 2023 were selected as the research subjects.The survey was conducted in the form of electronic questionnaires pushed by mobile phone text messages.The family treatment needs for hemophilia in children and the influencing factors were analyzed.Results A total of 430 parents of children with hemophilia filled in the questionnaire,and 409 valid questionnaires were collected,with an effective recovery rate of 95.12%.In the family treatment needs,there were 389 cases(95.11%)of first aid management need of the children patients with hemophilia,386 cases(94.38%)of pain management need,383 cases(93.64%)of bleeding health education need,382 cases(93.40%)of blood vessel protection need,380 cases(92.91%)disease and treatment related records need,375 cases(91.69%)of psychological care need,369 cases(90.22%)of family treatment basic knowledge need,362 cases(88.51%)of self-injection related operations need and 360 cases(88.02%)of daily life guidance need.The multivariate logistic regression analysis results showed that family monthly income 10000-<15000 Yuan(OR=4.297),family monthly income≥15000 Yuan and degree in disease severity(OR=3.609)were the positive stimulative factors of family treatment need in children patients with hemophilia(P<0.05),the parental cultural degree being undergraduate or above(OR=0.186)and drug administration tool being PICC or transfusion harbor(OR=0.113)were the negative interventional factors of family treatment need in children patients with hemophilia(P<0.05).Conclusion The family treatment need in the children patients with hemophilia is high,and it is needed to conduct the orientation health education according to the family characteristics of different children patients in order to increase the family treatment level.