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The effect of functioning on Quality of Life Inventory-Disability measured quality of life is not mediated or moderated by parental psychological distress

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Abstract

Purpose

The measurement of quality of life (QOL) in children with intellectual disability often relies upon proxy report via caregivers. The current study investigated whether caregiver psychological distress mediates or moderates the effects of impairment on their ratings of QOL in children with intellectual disability.

Methods

Caregivers of 447 children with an intellectual disability reported their child’s day-to-day functioning, their own psychological distress using the Kessler Psychological Distress Scale, and the Quality of Life Inventory-Disability (QI-Disability), a measure of QOL for proxy report of a child’s observable behaviours that indicate quality of life. Linear regression was used to assess the effects of the child’s functional abilities on their QI-Disability score and causal mediation analysis to estimate the extent to which these effects were mediated by caregivers’ psychological distress.

Results

A minority of caregivers (n = 121, 27.1%) reported no psychological distress. Lower day-to-day functional abilities, such as being fully dependent on others to manage their personal needs were associated with lower total QOL scores. There was no significant mediation effect of caregiver psychological distress on the association between child functioning and total QOL scores. Moderation analyses revealed small and largely nonsignificant interaction coefficients, indicating that caregiver psychological distress did not influence the strength of the relationship between child functioning and total QOL scores.

Conclusion

Caregiver psychological distress did not mediate or moderate the relationship between the level of functional abilities and QOL in children with intellectual disability. QI-Disability measured observable child behaviours which may reduce the influence of caregiver factors on the accurate measure of QOL for children with intellectual disability.

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Availability of data and material

Data are available on reasonable request and with ethical approval.

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Acknowledgements

We extend our thanks to the families for their participation in this study. This study was funded by the National Health and Medical Research Council (#1103745). We acknowledge the support of Ms Amy Epstein and Ms Nada Murphy who assisted with data collection, and Dr Emma Glasson who supported the recruitment of families from the WA Autism Registry. The Victorian Cerebral Palsy Register receives funding from the Victorian Department of Health and Human Services, the Royal Children’s Hospital Foundation and from the Victorian Government’s Operational Infrastructure Support Program for support for register staff. The authors acknowledge the support of Disability Services Commission WA in establishing the Down syndrome database, and community organizations Developmental Disability WA and the Down Syndrome Association of Western Australia for their support. We thank the Australian Paediatric Surveillance Unit (APSU) and the Rett Syndrome Association of Australia for their ongoing support in case ascertainment for the Australian Rett Syndrome Database.

Funding

This study was funded by the National Health and Medical Research Council (#1103745) and the Western Australian Department of Health who provided seed funding through a Merit Award. AW and HL are each supported by a Senior Research Fellowship from the National Health and Medical Research Council (#1077966, #1117105, respectively). D. Reddihough is funded by a University of Melbourne Award. The funders of this research have had no roles in the study design, data collection, data analysis, manuscript preparation, and/or publication decisions.

Author information

Authors and Affiliations

  1. Telethon Kids Institute, The University of Western Australia, PO Box 855, Perth, Western Australia, 6872, Australia

    A. J. O. Whitehouse, P. Jacoby, H. Leonard & Jenny Downs

  2. Neurodisability and Rehabilitation, Murdoch Children’s Research Institute, Melbourne, Victoria, Australia

    D. Reddihough

  3. Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia

    D. Reddihough

  4. Royal Children’s Hospital, Parkville, Victoria, Australia

    D. Reddihough

  5. Paediatric Education and Research, Monash University, Melbourne, Victoria, Australia

    K. Williams

  6. School of Physiotherapy and Exercise Science, Curtin University, Perth, Western Australia, Australia

    Jenny Downs

Authors
  1. A. J. O. Whitehouse
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  2. P. Jacoby
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  3. D. Reddihough
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  4. H. Leonard
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  5. K. Williams
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  6. Jenny Downs
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Contributions

AW contributed to the study conception and design, the interpretation of data for the work, drafting the work and revising it critically for important intellectual content. PJ contributed to the study conception and design, the analysis and interpretation of data for the work, drafting the work and revising it critically for important intellectual content. DR contributed to the study conception and design, the interpretation of data for the work, and revising it critically for important intellectual content. HL contributed to the study conception and design, the acquisition and interpretation of data for the work, and revising it critically for important intellectual content. KW contributed to the study conception and design, the interpretation of data for the work, and revising it critically for important intellectual content. JD contributed to the study conception and design, the acquisition, analysis and interpretation of data for the work, drafting the work and revising it critically for important intellectual content.

Corresponding author

Correspondence to Jenny Downs.

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The authors have no financial relationships of conflicts of interest relevant to this article to disclose.

Ethical approval

Ethics approval for this study was provided by Human Research Ethics Committees at The University of Western Australia (RA/4/20/4276) and the Child and Adolescent Health Services (RGS2390). Primary caregivers provided informed consent to participate in the study.

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Whitehouse, A.J.O., Jacoby, P., Reddihough, D. et al. The effect of functioning on Quality of Life Inventory-Disability measured quality of life is not mediated or moderated by parental psychological distress. Qual Life Res 30, 2875–2885 (2021). https://doi.org/10.1007/s11136-021-02855-9

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