Abstract
BackgroundPediatric intensive care unit (PICU) survivors are at risk for prolonged morbidities interfering with daily life. The current study examined parent-reported health-related quality of life (HRQoL) in former critically ill children and parents themselves and aimed to determine whether withholding parenteral nutrition (PN) in the first week of critical illness affected children’s and parents’ HRQoL 2 years later.MethodsChildren who participated in the pediatric early versus late parenteral nutrition in critical illness (PEPaNIC) trial and who were testable 2 years later (n = 1158) were included. Their HRQoL outcomes were compared with 405 matched healthy controls. At PICU admission, children had been randomly assigned to early-PN or late-PN. In the early-PN group, PN was initiated within 24 h after PICU admission. In the late-PN group, PN was withheld for up to 1 week in the PICU. Parents completed the Infant Toddler Quality of Life Questionnaire (ITQOL; age 2–3 years) or the Child Health Questionnaire-Parent Form 50 (CHQ-PF50; age 4–18 years). Besides, they completed the Health Utility Index (HUI) and the Short Form Health Survey (SF-12) regarding their child’s and their own HRQoL, respectively.ResultsFor the total age group of 786 post-PICU survivors, parents reported lower scores for almost all HRQoL scales compared to healthy children. Age-specifically, younger critically ill children (2.5 to 3 years old) scored worse for growth and development and older children (4–18 years old) scored worse for role functioning and mental health. Parents’ own mental and physical HRQoL was comparable to that of healthy control parents. No HRQoL differences were found between children in the late-PN and those in the early-PN group.ConclusionsParent-reported HRQoL of children 2 years after critical illness was impaired compared with healthy controls. In relation to their child’s HRQoL, parents reported impairments in emotions, personal time, and family activities; however, their own HRQoL was not impaired. Withholding PN in the first week during critical illness had no impact on longer-term HRQoL of the child.Trial registrationClinical trials, NCT01536275. Registered 22 February 2012
Highlights
Pediatric intensive care unit (PICU) survivors are at risk for prolonged morbidities interfering with daily life
Health-related quality of life (HRQoL) is the most common Patient-reported outcomes (PRO). It reflects the impact of health on the broad concept of quality of life, e.g., physical, mental, and social functioning, and provides insight in what the impairments mean for the daily life of the patient [5, 6]
Of the 1158 children who were alive and testable 2 years later, a total of 391 children in the early-parenteral nutrition (PN) group and 395 children in the late-PN group participated in the 2year PEPaNIC follow-up study (Fig. 1; flow diagram of study participants)
Summary
Pediatric intensive care unit (PICU) survivors are at risk for prolonged morbidities interfering with daily life. Improvements in care for critically ill children have led to lower mortality rates in our pediatric intensive care units (PICUs) [1]. A significant part of these surviving children will be confronted with increased morbidity after discharge from the hospital [1, 2]. Health-related quality of life (HRQoL) is the most common PRO. It reflects the impact of health on the broad concept of quality of life, e.g., physical, mental, and social functioning, and provides insight in what the impairments mean for the daily life of the patient [5, 6]
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