Health-related quality of life of children and their parents 2 years after critical illness: pre-planned follow-up of the PEPaNIC international, randomized, controlled trial

Abstract

Background: Pediatric 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. Methods: Children 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. Results: For 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. Conclusions: Parent-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.

Long-Term Outcomes and the Post-Intensive Care Syndrome in Critically Ill Children: A North American Perspective

“…The impact of emotional decline following PICU is not yet fully understood. Nevertheless, early recognition and referral of PICU patients who are high-risk for adverse emotional outcomes, particularly those with high levels of medical traumatic stress, may improve outcomes including health-related quality of life [ 15 , 25 , 74 , 75 , 76 ]. The downstream effects of adverse emotional outcomes on trajectory of PICs-P recovery have not been well elucidated, but there is evidence to suggest that more children with psychiatric morbidity after discharge are re-admitted with physical complaints in the following 6-12 months [ 70 ].…”

Phasing out DEHP from plastic indwelling medical devices used for intensive care: Does it reduce the long-term attention deficit of critically ill children?

“…Critically ill children are admitted to the pediatric intensive care unit (PICU) for medical conditions that acutely require vital organ support to avoid imminent death. Although most children, fortunately, recover well from the acute insult, many children are confronted with important long-term problems years after hospital discharge, including impaired neurocognitive development, growth retardation, poor physical functioning, and consequently reduced quality of life (Banwell et al, 2003;Mammen et al, 2012;Mesotten et al, 2012;Viner et al,2012;Garcia Guerra et al, 2013;Manning et al, 2018;Verstraete et al, 2018;Verstraete et al, 2019;Hordijk et al, 2020;Jacobs et al, 2020).…”

Impact of critical illness and withholding of early parenteral nutrition in the pediatric intensive care unit on long-term physical performance of children: a 4-year follow-up of the PEPaNIC randomized controlled trial

“…Many critically ill children face long-term health problems and impaired physical, neurocognitive, emotional, and behavioral development [ 1 – 6 ]. These sequelae are observed up to years after hospital discharge and can negatively affect health-related quality of life and academic performance [ 7 , 8 ]. Qualitative scales and questionnaires are valuable tools for documenting developmental impairments in the daily life functioning of the children after critical illness [ 6 – 8 ].…”

“…These sequelae are observed up to years after hospital discharge and can negatively affect health-related quality of life and academic performance [ 7 , 8 ]. Qualitative scales and questionnaires are valuable tools for documenting developmental impairments in the daily life functioning of the children after critical illness [ 6 – 8 ]. Certain domains have also been extensively documented with the use of objective, quantitative measurements such as anthropometrics to assess growth and a wide range of neurocognitive function tests to evaluate neurocognitive development [ 4 , 5 , 9 – 11 ].…”

“…Therefore, patients were invited for an extensive investigation of these outcomes 2 and 4 years after PICU admission, in comparison with healthy children. As compared with healthy children, former PICU patients showed worse health status, signs of impaired growth, worse neurocognitive functioning, more emotional and behavioral problems, and worse quality of life [ 8 , 10 , 11 ]. Importantly, as compared with early-PN, late-PN did not worsen any of these outcomes and even attenuated the impairments in executive functioning and visual-motor integration and reduced emotional/behavioral problems 2 and/or 4 years later [ 10 , 11 ], with differential DNA methylation identified as plausible molecular basis of these effects [ 24 , 25 ].…”