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Out-of-pocket costs for families and people living with cerebral palsy in Australia
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...
Autores principales: | , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Public Library of Science
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10358956/ https://www.ncbi.nlm.nih.gov/pubmed/37471345 http://dx.doi.org/10.1371/journal.pone.0288865 |
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author | Henry, Georgina Webb, Annabel Galea, Claire Pearce, Alison Balde, Isabelle Garrity, Fiona Marmont, Sophie Espie, James Badawi, Nadia McIntyre, Sarah |
author_facet | Henry, Georgina Webb, Annabel Galea, Claire Pearce, Alison Balde, Isabelle Garrity, Fiona Marmont, Sophie Espie, James Badawi, Nadia McIntyre, Sarah |
author_sort | Henry, Georgina |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-10358956 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Public Library of Science |
record_format | MEDLINE/PubMed |
spelling | pubmed-103589562023-07-21 Out-of-pocket costs for families and people living with cerebral palsy in Australia Henry, Georgina Webb, Annabel Galea, Claire Pearce, Alison Balde, Isabelle Garrity, Fiona Marmont, Sophie Espie, James Badawi, Nadia McIntyre, Sarah PLoS One Research Article 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. Public Library of Science 2023-07-20 /pmc/articles/PMC10358956/ /pubmed/37471345 http://dx.doi.org/10.1371/journal.pone.0288865 Text en © 2023 Henry et al https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. |
spellingShingle | Research Article Henry, Georgina Webb, Annabel Galea, Claire Pearce, Alison Balde, Isabelle Garrity, Fiona Marmont, Sophie Espie, James Badawi, Nadia McIntyre, Sarah Out-of-pocket costs for families and people living with cerebral palsy in Australia |
title | Out-of-pocket costs for families and people living with cerebral palsy in Australia |
title_full | Out-of-pocket costs for families and people living with cerebral palsy in Australia |
title_fullStr | Out-of-pocket costs for families and people living with cerebral palsy in Australia |
title_full_unstemmed | Out-of-pocket costs for families and people living with cerebral palsy in Australia |
title_short | Out-of-pocket costs for families and people living with cerebral palsy in Australia |
title_sort | out-of-pocket costs for families and people living with cerebral palsy in australia |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10358956/ https://www.ncbi.nlm.nih.gov/pubmed/37471345 http://dx.doi.org/10.1371/journal.pone.0288865 |
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