Redouane Brahim, Cohen Eyal, Stephens Derek, Keilty Krista, Mouzaki Marialena, Narayanan Unni, Moraes Theo, Amin Reshma
Division of Respiratory Medicine, The Hospital for Sick Children, Toronto, Canada.
Department of Pediatrics, University of Toronto, Toronto, Canada.
PLoS One. 2016 Feb 25;11(2):e0149999. doi: 10.1371/journal.pone.0149999. eCollection 2016.
Health related quality of life (HRQL) of children using medical technology at home is largely unknown. Our aim was to examine the HRQL in children on long-term ventilation at home (LTHV) in comparison to a cohort using an enterostomy tube.
Participants were divided into three groups: 1) LTHV without an enterostomy tube (LTHV cohort); 2) Enterostomy tube (GT cohort); 3) LTHV with an enterostomy tube (LTHV+GT cohort). Caregivers of children ≥ 5 years and followed at SickKids, Toronto, Canada, completed three questionnaires: Health Utilities Index 2/3 (HUI2/3), Caregiver Priorities Caregiver Health Index (CPCHILD), and the Paediatric Quality of Life Inventory (PedsQL). The primary outcome was the difference in utility (HUI2/3) scores between the cohorts.
One hundred and nineteen children were enrolled; 47 in the LTHV cohort, 44 in the GT cohort, and 28 in the LTHV+GT cohort. In univariate analysis, HUI2 mean (SE) scores were lowest for the GT cohort, 0.4 (0.04) followed by the LTHV+GT, 0.42 (0.05) and then the LTHV cohort, 0.7 (0.04), p = 0.001. A similar trend was seen for the HUI3 mean (SE) scores: GT cohort, 0.1 (0.06), followed by the LTHV +GT cohort, 0.2 (0.08) and then the LTHV cohort, 0.5 (0.06), p = 0.0001. Technology cohort, nursing hours and the severity of health care needs predicted HRQL as measured by the HUI2/3.
The HRQL of these children is low. Children on LTHV had higher HRQL than children using enterostomy tubes. Further work is needed to identify modifiable factors that can improve HRQL.
在家中使用医疗技术的儿童的健康相关生活质量（HRQL）在很大程度上尚不明确。我们的目的是比较在家中进行长期通气（LTHV）的儿童与使用造口管的队列儿童的HRQL。
参与者分为三组：1）无造口管的LTHV（LTHV队列）；2）造口管（GT队列）；3）有造口管的LTHV（LTHV + GT队列）。在加拿大多伦多病童医院接受随访的5岁及以上儿童的照顾者完成了三份问卷：健康效用指数2/3（HUI2/3）、照顾者优先事项照顾者健康指数（CPCHILD）和儿童生活质量量表（PedsQL）。主要结局是各队列之间效用（HUI2/3）得分的差异。
共招募了119名儿童；LTHV队列47名，GT队列44名，LTHV + GT队列28名。在单因素分析中，GT队列的HUI2平均（SE）得分最低，为0.4（0.04），其次是LTHV + GT队列，为0.42（0.05），然后是LTHV队列，为0.7（0.04），p = 0.001。HUI3平均（SE）得分也有类似趋势：GT队列，0.1（0.06），其次是LTHV + GT队列，0.2（0.08），然后是LTHV队列，0.5（0.06），p = 0.0001。技术队列、护理时长和医疗需求严重程度可预测HUI2/3所衡量的HRQL。
这些儿童的HRQL较低。进行LTHV的儿童比使用造口管的儿童具有更高的HRQL。需要进一步开展工作以确定可改善HRQL的可改变因素。
