SEARCHCROSS-SECTIONALpediatrics, neurology

cross-sectional·pediatrics, neurology, public health, epidemiology, family medicine·PMC10358956

Out-of-pocket costs for families and people living with cerebral palsy in Australia

PLOS ONE · 13 authors, 6 centres

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TL;DR

This cross-sectional survey study of 271 people with cerebral palsy and their families in Australia found that 94% reported out-of-pocket costs, with an overall annual median of $4,460 AUD, and that costs were two times higher for those with more severe motor impairments (GMFCS III-V).

Full summary

1,048 CHARS

A cross-sectional survey of 271 participants (children 0-6 years, children/adolescents 7-17 years, and adults) with cerebral palsy or their carers was conducted in Australia. The study aimed to estimate out-of-pocket costs and measure financial distress. The overall annual median cost was $4,460 AUD (IQR $11,955). After controlling for income, insurance, and disability funding, participants in the GMFCS III-V group had costs two times higher than those in the GMFCS I-II group. Age was not significantly associated with overall costs. Financial distress was high, with 36% of participants reporting high to overwhelming levels, though this was not significantly associated with age or GMFCS level after controlling for financial factors. Limitations include the cross-sectional design and context-specific findings during the COVID-19 pandemic in 2020-2021. The results suggest that substantial out-of-pocket costs and financial distress are common, which should inform policy and clinical planning to support people with CP and their families.

STUDY TYPE

cross-sectional

SPECIALTY

pediatrics

SUMMARISED BY

AI pipeline

FIDELITY CHECK

100% · A

ORIGINAL PAPER

PMC10358956

Out-of-pocket costs for families and people living with cerebral palsy in Australia

PLOS ONE

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ABSTRACT

The most recent cost estimates of cerebral palsy (CP) in Australia did not include out-of-pocket costs for families. This study aimed to: 1) describe and estimate out-of-pocket costs for people with CP and their families by age and gross motor function classification system (GMFCS) level; 2) measure financial distress. A cross-sectional quantitative survey design was used with qualitative approaches to analyse open-ended questions. A CP-specific out-of-pocket costs survey was co-designed with people with lived experience. Adults with CP and carers were recruited from Australian population-based CP Registers and via social media. Sociodemographic variables were analysed descriptively and median (IQR) expenses for health, assistive technology, personal care, housing, occupation, transport, leisure, respite and holidays, by age (0–6; 7–17; 18 years +) and gross motor function [GMFCS level I-II vs III-V] were calculated. The In Charge Financial Distress/Financial Wellbeing Scale measured financial distress. Regression analyses were conducted to investigate costs and financial distress. Additional out-of-pocket costs itemised in open-ended questions were charted. Comments were thematically analysed using the framework approach. 271 surveys were completed for children 0–6 years (n = 47), children/adolescents 7–17 years (n = 124) and adults (n = 100). 94% of participants had out-of-pocket costs associated with CP, with an overall annual median of $4,460 Australian dollars (IQR $11,955). After controlling for income, private insurance and disability funding, the GMFCS III-V group had costs two times higher than the GMFCS I-II group (2.01; 95% CI 1.15–3.51). Age was not significantly associated with costs. 36% of participants had high to overwhelming financial distress; this was not associated with age or GMFCS level after controlling for financial factors. Families had several additional disability costs. Open-ended responses revealed experiences of financial concern were influenced by funding scheme experiences, reduced income, uncertainty, access to support networks and an inability to afford CP-related costs. Cost estimates and financial distress indicators should inform policy, funding and clinical decisions when planning interventions to support people with CP and their families.

CITATION EXPORT

Georgina Henry, Annabel Webb, Claire Galea et al.. Out-of-pocket costs for families and people living with cerebral palsy in Australia. PLOS ONE. (2023). https://doi.org/10.1371/journal.pone.0288865

AUTHORS

13 · 6 CENTRES

Georgina Henry, Annabel Webb, Claire Galea, Alison Pearce, Isabelle Balde, Fiona Garrity, Sophie Marmont, James Espie, Nadia Badawi, Sarah McIntyre, Josue Mbonigaba, Josue Mbonigaba, Josue Mbonigaba

1 Cerebral Palsy Alliance Research Institute, Specialty of Child and Adolescent Health, The University of Sydney, Sydney, New South Wales, Australia
2 The Daffodil Centre, The University of Sydney, A Joint Venture with Cancer Council NSW, Sydney, New South Wales, Australia
3 Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
4 CP Quest, Cerebral Palsy Alliance, Sydney, New South Wales, Australia
5 Grace Centre for Newborn Care, Children’s Hospital at Westmead, Sydney, New South Wales, Australia
University of Kwazulu-Natal, SOUTH AFRICA

EDITOR / REVIEWER

Josue Mbonigaba