Pediatric Intensive Care Unit, Hospital General Universitario Gregorio Marañón, Calle Doctor Castelo 47, Madrid, 28009, Spain.
Gregorio Marañón Health Research Institute, Madrid, Spain.
Eur J Pediatr. 2017 Oct;176(10):1307-1317. doi: 10.1007/s00431-017-2983-z. Epub 2017 Aug 12.
HMV (home mechanical ventilation) in children has increased over the last years. The aim of the study was to assess perceived quality of life (QOL) of these children and their families as well as the problems they face in their daily life.We performed a multicentric cross-sectional study using a semi-structured interview about the impact of HMV on families and an evaluation questionnaire about perceived QOL by the patient and their families (pediatric quality of life questionnaire (PedsQL4.0)). We studied 41 subjects (mean age 8.2 years). Global scores in PedsQL questionnaire for subjects (median 61.4), and their parents (median 52.2) were below those of healthy children. 24.4% received medical follow-up at home and 71.8% attended school. Mothers were the main caregivers (75.6%), 48.8% of which were fully dedicated to the care of their child. 71.1% consider economic and healthcare resources insufficient. All families were satisfied with the care they provide to their children, even though it was considered emotionally overwhelming (65.9%). Marital conflict and neglect of siblings appeared in 42.1 and 36% of families, respectively.
Perceived QOL by children with HMV and their families is lower than that of healthy children. Parents are happy to care for their children at home, even though it negatively affects family life. What is Known: • The use of home mechanical ventilation (HMV) in children has increased over the last years. • Normal family functioning is usually disrupted by HMV. What is New: • The aim of HMV is to provide a lifestyle similar to that of healthy children, but perceived quality of life by these patients and their parents is low. • Most of the families caring for children on HMV agree that support and resources provided by national health institutions is insufficient.
近年来，儿童家庭机械通气（HMV）的应用有所增加。本研究旨在评估这些儿童及其家庭的生活质量（QOL）感知以及他们在日常生活中面临的问题。
我们进行了一项多中心横断面研究，使用半结构化访谈评估 HMV 对家庭的影响，以及患者及其家属对 QOL 的感知评估问卷（儿科生活质量问卷（PedsQL4.0））。我们研究了 41 名受试者（平均年龄 8.2 岁）。PedsQL 问卷中受试者（中位数 61.4）和他们父母（中位数 52.2）的总体得分均低于健康儿童。24.4%的患者接受家庭医疗随访，71.8%的患者上学。母亲是主要照顾者（75.6%），其中 48.8%全职照顾孩子。71.1%的家庭认为经济和医疗资源不足。所有家庭都对他们为孩子提供的护理感到满意，尽管这被认为是情感上的负担（65.9%）。42.1%和 36%的家庭分别出现了婚姻冲突和忽视兄弟姐妹的情况。
接受 HMV 治疗的儿童及其家庭的 QOL 感知低于健康儿童。父母乐于在家照顾孩子，尽管这对家庭生活有负面影响。
近年来，儿童家庭机械通气（HMV）的使用有所增加。
HMV 通常会破坏家庭的正常功能。
HMV 的目的是为患者提供类似于健康儿童的生活方式，但这些患者及其父母的生活质量感知较低。
大多数照顾接受 HMV 治疗的儿童的家庭都认为国家卫生机构提供的支持和资源不足。
