Status of health-related quality of life and impact of caregiver burden in children with rheumatism based on patient-reported outcomes
Objective To understand the current status of health-related quality of lifeand caregiver burden inchil-dren with rheumatism based on patient-reported outcomes(PROs),and to explore its influencing factors.Methods A total of 100 pediatric rheumatic patients aged 8-12 years old treated at a children's hospital in Shanghai from June 2022 to June 2023 were conducted a cross-sectional survey of the PROs and caregiver burden by using a convenience sampling method,and employing a general information questionnaire,caregiver burden inventory(CBI),and PRO-MIS pediatric-25 profile V2.0.Results The scores for 6 dimensions of depression,fatigue,pain,anxiety,peer re-lations,and physical function-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,re-spectively,with the highest scores in depression,anxiety,and fatigue.The incidence of moderate caregiver burden among caregivers of children with rheumatic diseases was 45.3％.The average scores of time-dependent burden,de-velopmental 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 the highest.The results ofunivariate analysis showed that family annual income had statis-tically significant differences in the dimensions of depression(F=3.44,P＜0.05)and pain(F=3.58,P＜0.05),and the use of steroids for the first time 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 physical function-mobility of children with rheumatic diseases.In the future,a precise symptom management model for children with rheumatism diseasescan be developed with reference to influencing factors,and the real feelings of children with rheumatism diseasescan be paid attention to.These findings also pro-vide insight into the stress and challenges faced by caregivers of children with rheumatic diseases,and future re-search should further explore different types of caregiver support and interventions to help reduce their burden and improve their quality of life.
rheumatic diseaseschildpatient reported outcome measures information systemcaregiver burdenhealth-related quality of lifenurse
万方数据
维普
