A Prospective Study of Parent Health-Related Quality of Life before and after Discharge from the Neonatal Intensive Care Unit

A Prospective Study of Parent Health-Related Quality of Life before and after Discharge from the Neonatal Intensive Care Unit
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DOI:
10.1016/j.jpeds.2019.05.067
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发表时间:
2019-10-01
影响因子:
5.1
通讯作者:
Lagatta, Joanne M.
Lagatta, Joanne M.
中科院分区:
医学2区
文献类型:
--
作者:
McAndrew, Sarah;Acharya, Krishna;Lagatta, Joanne M.

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目的 确定新生儿重症监护病房 (NICU) 住院期间和住院后 3 个月内婴儿疾病和父母人口统计数据与父母健康相关生活质量 (HRQL) 之间的关系。我们假设,极早产儿的父母报告的 NICU HRQL 低于其他父母,并且所有父母报告出院后 HRQL 有所改善。 研究设计 这项前瞻性研究针对 2016 年至 2017 年入住 IV 级 NICU ≥ 14 天的父母-婴儿夫妇,使用儿科生活质量调查家庭影响模块测量出院前和出院后 3 个月的父母 HRQL。使用多变量回归来确定与住院期间和出院后的 HRQL 差异相关的危险因素。 结果 在 194 例双人组中,167 例 (86%) 完成了研究(24% 极度早产;53% 中度至晚期早产;22% 足月)。在 NICU 住院期间,极早产儿的父母报告的调整后 HRQL(-7 分;P = .013)低于其他父母。出院后,极早产儿的父母报告其 HRQL 高于 NICU 评分(+10 分;P = .001)。气管切开术 (-13; P = .006)、家庭吸氧 (-6; P = .022) 和再入院 (-5; P = .037) 与出院 3 个月后父母 HRQL 较低相关,并根据 NICU HRQL 评分进行调整。 结论 与 NICU 住院的其他婴儿的父母相比,极早产儿的父母在 NICU 住院期间对 HRQL 的负面影响更大,出院后改善也更大。复杂的家庭护理与出院后较低的父母 HRQL 相关。家庭出院的潜在好处应与复杂的家庭护理的潜在负面影响相平衡。
Objective To determine how infant illness and parent demographics are associated with parent health-related quality of life (HRQL) during and 3 months after hospitalization in the neonatal intensive care unit (NICU). We hypothesized that parents of extremely preterm infants would report lower NICU HRQL than other parents, and that all parents would report improved HRQL after discharge.Study design This prospective study of parent-infant dyads admitted to a level IV NICU for >= 14 days from 2016 to 2017 measured parent HRQL before and 3 months after discharge using the Pediatric Quality of Life Inventory Family Impact Module. Multivariable regression was used to identify risk factors associated with HRQL differences during hospitalization and after discharge.Results Of the 194 dyads, 167 (86%) completed the study (24% extremely preterm; 53% moderate to late preterm; 22% term). During the NICU hospitalization, parents of extremely preterm infants reported lower adjusted HRQL (-7 points; P = .013) than other parents. After discharge, parents of extremely preterm infants reported higher HRQL compared with their NICU score (+10 points; P = .001). Tracheostomy (-13; P = .006), home oxygen (-6; P = .022), and readmission (-5; P = .037) were associated with lower parent HRQL 3 months after discharge, adjusted for NICU HRQL score.Conclusions Parents of extremely preterm infants experienced a greater negative impact on HRQL during the NICU hospitalization and more improvement after discharge than parents of other infants hospitalized in the NICU. Complex home care was associated with lower parent HRQL after discharge. The potential benefit of home discharge should be balanced against the potential negative impact of complex home care.