过渡期准备度评估问卷在儿童炎症性肠病青春期向成人过渡中的应用  

Application of transition period readiness assessment questionnaire in the transition from adolescence to adulthood of children with inflammatory bowel disease

作　　者：姜国新 聂晓璐[2] 孟园 胡芳 吴捷 Jiang Guoxin;Nie Xiaolu;Meng Yuan;Hu Fang;Wu Jie(Department of Nursing,Beijing Children's Hospital,Capital Medical University,National Center for Children's Health,Beijing 100045,China;Center for Clinical Epidemiology and Evidence-based Medicine,Beijing Children's Hospital,Capital Medical University,National Center for Children Health,Beijing 100045,China;Department of Gastroenterology,Beijing Children's Hospital,Capital Medical University,National Center for Children's Health,Beijing 100045,China)

机构地区：[1]国家儿童医学中心、首都医科大学附属北京儿童医院护理部,100045 [2]国家儿童医学中心、首都医科大学附属北京儿童医院临床流行病与循证医学中心,100045 [3]国家儿童医学中心、首都医科大学附属北京儿童医院消化科,100045

出　　处：《中国小儿急救医学》2025年第4期264-272,共9页Chinese Pediatric Emergency Medicine

基　　金：国家重点研发计划(2023YFC2706503);2024年度慢性病防治与健康教育科研项目(BJMB0012024026008);深圳市“医疗卫生三名工程”项目资助(SZSM202311023)。

摘　　要：目的研究我国炎症性肠病(IBD)患者青春期向成人过渡期准备度现状,分析过渡期准备度的影响因素,为制定科学且有针对性的过渡期准备方案提供依据。方法选取2016年1月1日至2025年1月15日就诊于首都医科大学附属北京儿童医院消化科、年龄12~24岁的IBD患者为研究对象。于2024年11月1日至2025年1月15日采用方便抽样法,通过向IBD患者线上发放青春期向成人过渡期准备度评估问卷(TRAQ)6.0汉化量表进行调查。计算TRAQ量表各维度评分,采用多元线性回归分析研究过渡期评分的影响因素。结果共纳入184例患者,收集184份调查问卷,男性患者略多于女性(109∶75),平均年龄(14.94±2.35)岁。70.11%患者疾病持续时间在1~5年,克罗恩病患者占比最高(54.89%),疾病严重程度以较轻微至中等程度为主。家庭支持普遍较高(84.24%),父母高度参与到患者疾病管理中(94.02%),受到社会支持的患者占52.72%。TRAQ量表总分平均为4.14±0.89,其中四个维度平均得分由高至低依次为跟踪健康问题(4.28±0.97)、坚持预约且按时就诊(4.20±1.10)、与医务人员交谈(4.17±1.05)、药物管理(4.14±0.99)。多元线性回归分析显示,家庭状况、家庭成员是否经常鼓励、支持与帮助以及是否会受到来自社会的支持是IBD患者青春期向成人过渡期准备度评分的独立影响因素(P<0.05)。其中,家庭状况对过渡期准备度评分有正向影响,随着和睦程度增加,准备度评分提升程度升高(P<0.05);社会支持对过渡期准备度评分亦有正向影响(P<0.05);与家庭成员从不进行鼓励、支持与帮助相比,很少进行鼓励的情况对准备度评分具有一定的提升作用(P<0.05)。结论儿童IBD患者在青春期向成人过渡期准备中整体表现较好。家庭状况、家庭是否经常鼓励、支持和帮助以及社会支持是影响过渡期准备度的重要因素。Objective To study the current status of transitional readiness from adolescence to adulthood of patients with inflammatory bowel disease(IBD)in China,analyze the factors affecting transitional readiness,and provide a basis for developing scientific and targeted transitional preparedness programmes.Methods The IBD patients aged 12-24 years who were admitted to the Department of Gastroenterology,Beijing Children's Hospital Affiliated to Capital Medical University from January 1,2016 to January 15,2025 were enrolled.From November 1,2024 to January 15,2025,the survey was conducted through online distribution of the transition readiness assessment questionnaire(TRAQ)6.0 Chinese version scale to IBD patients by using the convenient sampling method.The scores of each dimension of TRAQ scale were calculated,and multiple linear regression analysis was used to analyze the factors influencing the scores of TRAQ during the transitional period.Results A total of 184 patients were included and 184 questionnaires were collected.Male patients were slightly more than female(109:75),with an average age of(14.94±2.35)years.70.11%of patients had a disease duration of 1 to 5 years,with Crohn's disease accounting for the highest proportion(54.89%),and the severity of the disease was mostly mild to moderate.Family support was generally higher(84.24%).Parents were highly involved in patient disease management(94.02%).There were 52.72%of the patients received social support.The mean score of the TRAQ was 4.14±0.89,and the mean scores of the four dimensions from high to low were following health problems(4.28±0.97),insisting on making an appointment and seeing a doctor on time(4.20±1.10),talking with medical staff(4.17±1.05)and drug management(4.14±0.99).Multiple linear regression analysis showed that family status,the encourage,supports and help from the family members,and the supports from the society were the independent influencing factors of IBD patients'readiness score for transition from adolescence to adulthood(P<0.05).Amon

关 键 词：炎症性肠病 儿童 青春期向成人过渡 工具量化与评价 

分 类 号：R574[医药卫生—消化系统]