基于患者报告结局的风湿病儿童健康相关生活质量现状及照顾者负担的影响研究

Status of health-related quality of life and impact of caregiver burden in children with rheumatism based on patient-reported outcomes

目的 了解基于患者报告结局的风湿病儿童健康相关生活质量及其照顾者负担现状,并探讨其影响因素。方法 采取便利抽样法,应用一般资料调查表、照顾者负担量表(caregiver burden inventory, CBI)及儿童患者报告结局测量信息系统特征集(PROMIS pediatric-25 profile V2.0)横断面调查2022年6月-2023年6月在上海某儿童医院收治的100例8~12岁风湿病儿童的患者报告结局及其照顾者负担现状。结果 PROMIS Pediatric-25 Profile的抑郁、疲劳、疼痛、焦虑、同伴关系及身体功能-移动性6个维度的得分分别为(46.32±9.23)分、(45.94±8.99)分、(42.90±7.44)分、(46.07±8.49)分、(40.95±12.29)分、(25.21±4.57)分,其中抑郁、焦虑和疲劳得分最高。风湿病儿童照顾者中等负担发生率为45.3%,照顾者负担的时间依赖性负担、发展受限性负担、身体性负担、社会性负担和情感性负担5个维度的得分平均分分别为(1.33±0.76)分、(0.71±0.59)分、(0.67±0.60)分、(2.20±1.20)分、(1.47±0.88)分,其中社会性负担得分最高。单因素分析结果显示:家庭年收入在抑郁维度(F=3.44,P<0.05)和疼痛维度(F=3.58,P<0.05)差异有统计学意义,是否首次使用激素在身体功能-移动性维度差异有统计学意义(t=2.00,P<0.05)。结论 风湿病儿童抑郁、焦虑和疲劳现状有待改善,且家庭年收入在5万~10万元的儿童抑郁和疼痛水平最高、在10万~15万元的儿童抑郁和疼痛水平最低,初次使用激素可能对风湿病儿童的身体功能-移动性存在影响。未来可参照影响因素制定风湿病儿童精准症状管理模式,关注风湿病儿童的真实感受。这些发现也提供了风湿病儿童照顾者所面临的压力和挑战,未来的研究应该进一步探索不同类型的照顾者支持和干预措施,以帮助减轻他们的负担,并提高其生活质量。

Objective To understand the current status of health-related quality of lifeand caregiver burden inchildren with rheumatismbased on patient-reported outcomes (PROs), and to explore its influencing factors. Methods A total of 100 pediatricrheumatic patients aged 8-12 years old treated at a children's hospital in Shanghai from June 2022 to June 2023 wereconducted a cross-sectional survey of the PROs and caregiver burden by using a convenience sampling method, andemploying a general information questionnaire, caregiver burden inventory (CBI), and PROMIS pediatric-25 profileV2.0. Results The scores for 6 dimensions of depression, fatigue, pain, anxiety, peer relations, and physicalfunction-mobility in the PROMIS Pediatric-25 Profile were (46.32±9.23)points,(45.94±8.99)points,(42.90±7.44)points, (46.07±8.49)points, (40.95±12.29)points, and (25.21±4.57)points, respectively, with the highestscores in depression, anxiety, and fatigue. The incidence of moderate caregiver burden among caregivers of childrenwith rheumatic diseases was 45.3%. The average scores of time-dependent burden, developmental limitations,physical burden, social burden, and emotional burden dimensions were (1.33±0.76)points, (0.71±0.59)points,(0.67±0.60)points, (2.20±1.20)points, and (1.47±0.88)points, respectively, with social burden scoring thehighest.The results ofunivariate analysis showed that family annual income had statistically significant differences inthe dimensions of depression ( F =3.44, P <0.05) and pain ( F =3.58, P <0.05), and the use of steroids for the firsttime was statistically significant in the physical function-mobility dimension ( t =2.00, P <0.05). Conclusions The current status of depression, anxiety, and fatigue in children with rheumatic diseases needs to be improved,and children with a family annual income of 50,000-100,000 yuan had the highest levels of depression and pain,while those with 100,000-150,000 yuan had the lowest, and initial use of steroids mayhave an impact on the physicalfunction-mobility of children with rheumatic diseases.In the future, a precise symptom management model forchildren with rheumatism diseasescan be developed with reference to influencing factors, and the real feelings ofchildren with rheumatism diseasescan be paid attention to. These findings also provide insight into the stress andchallenges faced by caregivers of children with rheumatic diseases, and future research should further exploredifferent types of caregiver support and interventions to help reduce their burden and improve their quality of life.