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

José Hordijk, Sascha Verbruggen, Ilse Vanhorebeek, Fabian Güiza, Pieter Wouters, Greet Van den Berghe, Koen Joosten, Karolijn Dulfer, José Hordijk, Sascha Verbruggen, Ilse Vanhorebeek, Fabian Güiza, Pieter Wouters, Greet Van den Berghe, Koen Joosten, Karolijn Dulfer

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.

Trial registration: Clinical trials, NCT01536275. Registered 22 February 2012.

Keywords: Follow-up study; Parenteral nutrition; Parents; Pediatric intensive care unit; Quality of life.

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Flow diagram of study participants

References

    1. Namachivayam P, Shann F, Shekerdemian L, Taylor A, van Sloten I, Delzoppo C, et al. Three decades of pediatric intensive care: who was admitted, what happened in intensive care, and what happened afterward. Pediatr Crit Care Med. 2010;11(5):549–555. doi: 10.1097/PCC.0b013e3181ce7427.
    1. Pulham RA, Wray J, Feinstein Y, Brown K, Pierce C, Nadel S, et al. Feasibility and acceptability of methods to collect follow-up information from parents 12 months after their child's emergency admission to pediatric intensive care. Pediatr Crit Care Med. 2019;20(4):e199–e207. doi: 10.1097/PCC.0000000000001892.
    1. Porter ME. What is value in health care? N Engl J Med. 2010;363(26):2477–2481. doi: 10.1056/NEJMp1011024.
    1. Weldring T, Smith SM. Patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs) Health Serv Insights. 2013;6:61–68.
    1. Palermo TM, Long AC, Lewandowski AS, Drotar D, Quittner AL, Walker LS. Evidence-based assessment of health-related quality of life and functional impairment in pediatric psychology. J Pediatr Psychol. 2008;33(9):983–996. doi: 10.1093/jpepsy/jsn038.
    1. Karimi M, Brazier J. Health, health-related quality of life, and quality of life: what is the difference? Pharmacoeconomics. 2016;34(7):645–649. doi: 10.1007/s40273-016-0389-9.
    1. Hordijk J, Verbruggen S, Vanhorebeek I, Van den Berghe G, Utens E, Joosten K, et al. Health-related quality of life of children and their parents 6 months after children's critical illness. Qual Life Res. 2020;29(1):179–89.
    1. Nelson LP, Gold JI. Posttraumatic stress disorder in children and their parents following admission to the pediatric intensive care unit: a review. Pediatr Crit Care Med. 2012;13(3):338–347. doi: 10.1097/PCC.0b013e3182196a8f.
    1. Aspesberro F, Mangione-Smith R, Zimmerman JJ. Health-related quality of life following pediatric critical illness. Intensive Care Med. 2015;41(7):1235–1246. doi: 10.1007/s00134-015-3780-7.
    1. Fivez T, Kerklaan D, Mesotten D, Verbruggen S, Wouters PJ, Vanhorebeek I, et al. Early versus late parenteral nutrition in critically ill children. N Engl J Med. 2016;374(12):1111–1122. doi: 10.1056/NEJMoa1514762.
    1. van Puffelen E, Polinder S, Vanhorebeek I, Wouters PJ, Bossche N, Peers G, et al. Cost-effectiveness study of early versus late parenteral nutrition in critically ill children (PEPaNIC): preplanned secondary analysis of a multicentre randomised controlled trial. Crit Care. 2018;22(1):4. doi: 10.1186/s13054-017-1936-2.
    1. Verstraete S, Verbruggen SC, Hordijk JA, Vanhorebeek I, Dulfer K, Guiza F, et al. Long-term developmental effects of withholding parenteral nutrition for 1 week in the paediatric intensive care unit: a 2-year follow-up of the PEPaNIC international, randomised, controlled trial. Lancet Respir Med. 2019;7(2):141–153. doi: 10.1016/S2213-2600(18)30334-5.
    1. Fivez T, Kerklaan D, Verbruggen S, Vanhorebeek I, Verstraete S, Tibboel D, et al. Impact of withholding early parenteral nutrition completing enteral nutrition in pediatric critically ill patients (PEPaNIC trial): study protocol for a randomized controlled trial. Trials. 2015;16:202. doi: 10.1186/s13063-015-0728-8.
    1. Landgraf JM, Abetz L. The infant/toddler child health questionnaire: conceptual framework, logic content, and preliminary psychometric results. Boston: Health Act; 1994.
    1. Landgraf JM, Maunsell E, Speechley KN, Bullinger M, Campbell S, Abetz L, et al. Canadian-French, German and UK versions of the Child Health Questionnaire: methodology and preliminary item scaling results. Qual Life Res. 1998;7(5):433–445. doi: 10.1023/A:1008810004694.
    1. Gandek B, Ware JE, Aaronson NK, Apolone G, Bjorner JB, Brazier JE, et al. Cross-validation of item selection and scoring for the SF-12 Health Survey in nine countries: results from the IQOLA Project. International quality of life assessment. J Clin Epidemiol. 1998;51(11):1171–1178. doi: 10.1016/S0895-4356(98)00109-7.
    1. Mols F, Pelle AJ, Kupper N. Normative data of the SF-12 health survey with validation using postmyocardial infarction patients in the Dutch population. Qual Life Res. 2009;18(4):403–414. doi: 10.1007/s11136-009-9455-5.
    1. Wulff J, Jeppesen L. Multiple imputation by chained equations in praxis: guidelines and review. Electron J Bus Res Methods. 2017;15:41–56.
    1. Watson RS, Asaro LA, Hutchins L, Bysani GK, Killien EY, Angus DC, et al. Risk factors for functional decline and impaired quality of life after pediatric respiratory failure. Am J Respir Crit Care Med. 2019;200(7):900–909. doi: 10.1164/rccm.201810-1881OC.
    1. Ekim A. The post-intensive care syndrome in children. Compr Child Adolesc Nurs. 2018;43(1):15–21.
    1. van Zellem L, Utens EM, Legerstee JS, Cransberg K, Hulst JM, Tibboel D, et al. Cardiac arrest in children: long-term health status and health-related quality of life. Pediatr Crit Care Med. 2015;16(8):693–702. doi: 10.1097/PCC.0000000000000452.
    1. Meert K, Slomine BS, Christensen JR, Telford R, Holubkov R, Dean JM, et al. Burden of caregiving after a child's in-hospital cardiac arrest. Resuscitation. 2018;127:44–50. doi: 10.1016/j.resuscitation.2018.03.034.
    1. Buysse CM, Raat H, Hazelzet JA, Vermunt LC, Utens EM, Hop WC, et al. Long-term health-related quality of life in survivors of meningococcal septic shock in childhood and their parents. Qual Life Res. 2007;16(10):1567–1576. doi: 10.1007/s11136-007-9271-8.

Source: PubMed

Sponsors and Collaborators

Medical Conditions

Drug Interventions

3
Subscribe