Group for Improvement of Intestinal Function and Treatment (GIFT), The Hospital for Sick Children, Toronto, Canada.
Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada.
JPEN J Parenter Enteral Nutr. 2023 Mar;47(3):342-353. doi: 10.1002/jpen.2461. Epub 2022 Dec 21.
Improved survival rates for children with intestinal failure (IF) have resulted in an increased population of children receiving long-term parenteral nutrition (PN). Our objective was to determine burden on caregivers of children with IF receiving long-term PN.
We performed a cross-sectional study of caregivers of children with IF receiving long-term PN in our intestinal rehabilitation program. A healthy comparison group matched on age of the child was enrolled. All participants completed standardized questionnaires, including the Parental Stress Index - Short Form (PSI-SF), Hospital Anxiety and Depression Scale (HADS), and PedsQL Family Impact Module (PedsQL FIM). Univariate analysis was completed using a Student t test and chi-square, with an alpha value of <0.05 considered significant.
Thirty-eight caregivers of children with IF and 29 caregivers of healthy children consented, with response rates of 89% and 96.5%, respectively. Our study demonstrated increased stress for caregivers compared with comparison parents (PSI-SF total score of 83 [SD = 26.8] vs 62.9 [SD = 13.5]; P < 0.01). Caregivers had increased anxiety (HADS anxiety score of 9.3 [SD = 4.8] vs 6.7 [SD = 3.2]; P = 0.02) and higher depression scores (HADS depression score of 6.3 [SD = 4.3] vs 4.1 [SD = 2.6]; P = 0.02) compared with the comparison group. Caregivers of children with IF demonstrated decreased health-related quality of life (HRQoL) (reduced PedsQL FIM total score of 50.6 [SD = 18.2] vs 84.1 [SD = 20.5]; P < 0.01).
Our results demonstrated significant burden of care in caregivers of children with IF receiving long-term PN, with elevated stress, anxiety, and depression and decreased HRQoL.
儿童肠衰竭（IF）的存活率提高导致越来越多的儿童接受长期肠外营养（PN）。我们的目的是确定接受长期 PN 的 IF 儿童的照顾者的负担。
我们对我院肠康复计划中接受长期 PN 的 IF 儿童的照顾者进行了横断面研究。招募了年龄匹配的健康儿童对照组。所有参与者都完成了标准化问卷，包括父母压力指数-短表（PSI-SF）、医院焦虑抑郁量表（HADS）和儿科生活质量问卷家庭影响模块（PedsQL FIM）。使用学生 t 检验和卡方检验进行单变量分析，显著性水平为<0.05。
38 名 IF 儿童的照顾者和 29 名健康儿童的照顾者同意参加，响应率分别为 89%和 96.5%。与对照组相比，我们的研究表明照顾者的压力增加（PSI-SF 总分 83[SD=26.8]与 62.9[SD=13.5]；P<0.01）。照顾者焦虑增加（HADS 焦虑评分 9.3[SD=4.8]与 6.7[SD=3.2]；P=0.02）和抑郁评分较高（HADS 抑郁评分 6.3[SD=4.3]与 4.1[SD=2.6]；P=0.02）。与对照组相比，IF 儿童的照顾者健康相关生活质量（HRQoL）下降（PedsQL FIM 总分 50.6[SD=18.2]与 84.1[SD=20.5]；P<0.01）。
我们的研究结果表明，接受长期 PN 的 IF 儿童的照顾者负担沉重，压力、焦虑和抑郁增加，HRQoL 降低。
