Neam Victoria C, Faino Anna, O'Hara Michael, Wendel Danielle, Horslen Simon P, Javid Patrick J
Seattle Children's Hospital, Seattle, Washington, USA.
Seattle Children's Research Institute, Seattle, Washington, USA.
JPEN J Parenter Enteral Nutr. 2022 Mar;46(3):652-659. doi: 10.1002/jpen.2212. Epub 2021 Jul 22.
Due to altered nutrition regimens and complex medical needs, pediatric intestinal failure (IF) may have a powerful impact on health-related quality of life (HRQOL). Studies have shown that children with IF experience lower HRQOL. Data on the HRQOL of families of children with IF are lacking.
We performed a prospective analysis of the HRQOL of families of children with IF in a regional intestinal rehabilitation program from 2011 to 2018. The Pediatric Quality of Life Family Impact Module (FIM) was administered annually to parents. FIM scores were regressed on risk factors using linear mixed-effect models that accounted for repeated surveys within families.
A total of 117 families completed 272 surveys. FIM scores increased with patient age across nearly all survey dimensions. Total FIM scores were lower when compared to families of healthy children (median differences = -5, P = .01) and similar to families of chronically ill children. While IF families reported major deficits in the Communication (-11, P < .001) and Worry (-17, P < .001) dimensions, they also reported higher Family Relationship scores (+7, P < .01). On multivariable regression, presence of a major comorbidity and four or more hospital admissions in the prior year were associated with lower family HRQOL (P < .05). Parenteral nutrition dependence was independently associated with lower scores in the Communication (-7, P = .03) and Daily Activities (-10, P = .02) dimensions.
Families of children with IF experience a decreased HRQOL that may improve with patient age. Intestinal rehabilitation programs should address the HRQOL of families in addition to patients.
由于营养方案的改变和复杂的医疗需求，儿童肠衰竭（IF）可能对健康相关生活质量（HRQOL）产生重大影响。研究表明，患有IF的儿童HRQOL较低。缺乏关于IF患儿家庭HRQOL的数据。
我们对2011年至2018年在一个地区性肠道康复项目中IF患儿家庭的HRQOL进行了前瞻性分析。每年向家长发放儿童生活质量家庭影响模块（FIM）。使用考虑家庭内部重复调查的线性混合效应模型，将FIM分数与危险因素进行回归分析。
共有117个家庭完成了272次调查。几乎在所有调查维度上，FIM分数都随患儿年龄增加而升高。与健康儿童家庭相比，FIM总分较低（中位数差异=-5，P=.01），与慢性病患儿家庭相似。虽然IF患儿家庭在沟通（-11，P<.001）和担忧（-17，P<.001）维度上报告有重大缺陷，但他们也报告了较高的家庭关系得分（+7，P<.01）。在多变量回归分析中，存在主要合并症和前一年住院4次或更多次与家庭HRQOL较低相关（P<.05）。肠外营养依赖与沟通（-7，P=.03）和日常活动（-10，P=.02）维度得分较低独立相关。
IF患儿家庭的HRQOL下降，可能会随着患儿年龄增长而改善。肠道康复项目除了关注患儿外，还应关注患儿家庭的HRQOL。
