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Health-related quality of life in neonates and infants: a conceptual framework

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Abstract

Purpose

With reduced mortality of neonatal conditions, health-related quality of life (HRQOL) has become an important clinical outcome. However, since the meaning of HRQOL in dependent, non-autonomous infants and neonates remains largely undefined, HRQOL measurement and economic evaluation are limited due to the lack of age-specific methodology. The objective was to construct a conceptual framework of neonatal and infant HRQOL (NIHRQOL) which identifies factors relevant to the neonate and infant, their relationship with each other and the caregiving environment.

Methods

Using qualitative methods, a concept was developed based on in-depth analysis of verbatim records of two focus groups (6 caregivers, 6 healthcare providers) and five interviews with caregivers of chronically ill neonates/infants (n = 2), and healthcare professionals of a pediatric tertiary healthcare center (n = 3). Two analysts independently performed thematic analysis using an inductive and contextual approach.

Results

The majority of participants regarded NIHRQOL as an individual entity, which was closely related and strongly influenced by caregivers and family. It may be gauged by the perceived degree of effort required to achieve expected normalcy in everyday life for the neonate/infant and its family. The importance of individual HRQOL factors is developmental stage-dependent.

Conclusion

Neonatal and infant HRQOL is a multidimensional, multilayered and interconnected concept, where the child’s needs contribute most directly, and the caregiver’s and society’s ability to meet those needs characterize the interdependence between the child and its caregiving environment. Developmental stage-specific HRQOL instruments for premature and mature neonates, and infants are warranted to allow for valid HRQOL measurement.

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Funding

This research was funded in the form of scholarships to C. Oliveira from the Swiss National Science Foundation, the Walter and Gertrud Siegenthaler Foundation, the University of Zurich, Switzerland, and The Hospital for Sick Children, Toronto, Canada. Travel support from The Hospital for Sick Children is gratefully acknowledged.  Wendy J. Ungar is the Canada Research Chair in Economic Evaluation and Technology Assessment in Child Health.

Author information

Authors and Affiliations

  1. Group for Improvement of Intestinal Function and Treatment Program (GIFT), The Hospital for Sick Children, Toronto, Canada

    Carol Oliveira, Nicole T. de Silva, Yaron Avitzur, Julia Maxwell & Paul W. Wales

  2. Division of General and Thoracic Surgery, The Hospital for Sick Children, Toronto, Canada

    Carol Oliveira, Nicole T. de Silva & Paul W. Wales

  3. Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Canada

    Carol Oliveira, Wendy J. Ungar & Paul W. Wales

  4. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada

    Carol Oliveira, Wendy J. Ungar, Ahmed M. Bayoumi, Jeffrey S. Hoch & Paul W. Wales

  5. Centre for Research On Inner City Health, Li Ka Shing Knowledge Institute and Division of General Internal Medicine, St. Michael’s Hospital, Toronto, Canada

    Ahmed M. Bayoumi

  6. Division of Gastroenterology, Hepatology and Nutrition, The Hospital for Sick Children, Toronto, Canada

    Yaron Avitzur

  7. Centre for Excellence in Economic Analysis Research (CLEAR), St. Michael’s Hospital, Toronto, Canada

    Jeffrey S. Hoch

Authors
  1. Carol Oliveira
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Correspondence to Wendy J. Ungar.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the Hospital for Sick Children and the University of Toronto and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Oliveira, C., de Silva, N.T., Ungar, W.J. et al. Health-related quality of life in neonates and infants: a conceptual framework. Qual Life Res 29, 1159–1168 (2020). https://doi.org/10.1007/s11136-020-02432-6

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