Rieza H Soelaeman1, Michael G Smith2, Kashika Sahay3, J Mick Tilford4, Dana Goodenough5, Pangaja Paramsothy1, Lijing Ouyang1, Joyce Oleszek6,7, Scott D Grosse1. 1. National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, USA. 2. Department of Health Services Management and Policy, College of Public Health, East Tennessee State University, Johnson City, Tennessee, USA. 3. Carter Consulting Inc, Atlanta, Georgia, USA. 4. Department of Health Policy and Management, Fay W. Boozman College of Public Health, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA. 5. Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee, USA. 6. Department of Physical Medicine and Rehabilitation, University of Colorado School of Medicine, Aurora, Colorado, USA. 7. Children's Hospital Colorado, Aurora, Colorado, USA.
Abstract
INTRODUCTION/AIMS: Duchenne and Becker muscular dystrophies (DBMD) are X-linked neuromuscular disorders characterized by progressive muscle weakness, leading to decreased mobility and multisystem complications. We estimate productivity costs attributable to time spent by a parent caring for a male child under the age of 18 y with DBMD, with particular focus on female caregivers of boys with Duchenne muscular dystrophy (DMD) who have already lost ambulation. METHODS: Primary caregivers of males with DBMD in the Muscular Dystrophy Surveillance and Research Tracking Network (MD STARnet) were surveyed during 2011-2012 on family quality of life measures, including labor market outcomes. Of 211 respondents, 96 female caregivers of boys with DBMD were matched on state, year of survey, respondent's age, child's age, and number of minor children with controls constructed from Current Population Survey extracts. Regression analysis was used to estimate labor market outcomes and productivity costs. RESULTS: Caregivers of boys with DBMD worked 296 h less per year on average than caregivers of unaffected children, translating to a $8816 earnings loss in 2020 U.S. dollars. Caregivers of boys with DMD with ≥4 y of ambulation loss had a predicted loss in annualized earnings of $23,995, whereas caregivers of boys with DBMD of the same ages who remained ambulatory had no loss of earnings. DISCUSSION: Female caregivers of non-ambulatory boys with DMD face additional household budget constraints through income loss. Failure to include informal care costs in economic studies could understate the societal cost-effectiveness of strategies for managing DMD that might prolong ambulation.
INTRODUCTION/AIMS: Duchenne and Becker muscular dystrophies (DBMD) are X-linked neuromuscular disorders characterized by progressive muscle weakness, leading to decreased mobility and multisystem complications. We estimate productivity costs attributable to time spent by a parent caring for a male child under the age of 18 y with DBMD, with particular focus on female caregivers of boys with Duchenne muscular dystrophy (DMD) who have already lost ambulation. METHODS: Primary caregivers of males with DBMD in the Muscular Dystrophy Surveillance and Research Tracking Network (MD STARnet) were surveyed during 2011-2012 on family quality of life measures, including labor market outcomes. Of 211 respondents, 96 female caregivers of boys with DBMD were matched on state, year of survey, respondent's age, child's age, and number of minor children with controls constructed from Current Population Survey extracts. Regression analysis was used to estimate labor market outcomes and productivity costs. RESULTS: Caregivers of boys with DBMD worked 296 h less per year on average than caregivers of unaffected children, translating to a $8816 earnings loss in 2020 U.S. dollars. Caregivers of boys with DMD with ≥4 y of ambulation loss had a predicted loss in annualized earnings of $23,995, whereas caregivers of boys with DBMD of the same ages who remained ambulatory had no loss of earnings. DISCUSSION: Female caregivers of non-ambulatory boys with DMD face additional household budget constraints through income loss. Failure to include informal care costs in economic studies could understate the societal cost-effectiveness of strategies for managing DMD that might prolong ambulation.
Authors: Sara C Atehortúa; Luz H Lugo; Mateo Ceballos; Esteban Orozco; Paula A Castro; Juan C Arango; Heidi E Mateus Journal: Value Health Reg Issues Date: 2018-03-10
Authors: Marianna Cavazza; Yllka Kodra; Patrizio Armeni; Marta De Santis; Julio López-Bastida; Renata Linertová; Juan Oliva-Moreno; Pedro Serrano-Aguilar; Manuel Posada-de-la-Paz; Domenica Taruscio; Arrigo Schieppati; Georgi Iskrov; Márta Péntek; Johann Matthias Graf von der Schulenburg; Panos Kanavos; Karine Chevreul; Ulf Persson; Giovanni Fattore Journal: Eur J Health Econ Date: 2016-04-02
Authors: Meredith Medway; Allison Tong; Jonathan C Craig; Siah Kim; Fiona Mackie; Steven McTaggart; Amanda Walker; Germaine Wong Journal: Am J Kidney Dis Date: 2014-09-20 Impact factor: 8.860
Authors: S Ryder; R M Leadley; N Armstrong; M Westwood; S de Kock; T Butt; M Jain; J Kleijnen Journal: Orphanet J Rare Dis Date: 2017-04-26 Impact factor: 4.123
Authors: Natalia Frishman; Kristin Caspers Conway; Jennifer Andrews; Jacob Oleson; Katherine Mathews; Emma Ciafaloni; Joyce Oleszek; Molly Lamb; Dennis Matthews; Pangaja Paramsothy; Lowell McKirgan; Paul Romitti Journal: Health Qual Life Outcomes Date: 2017-02-10 Impact factor: 3.186
Authors: Alicia Aurora Rodríguez; Imanol Amayra; Juan Francisco López-Paz; Oscar Martínez; Maitane García; Mónika Salgueiro; Mohammad Al-Rashaida; Paula María Luna; Paula Pérez-Nuñez; Nicole Passi; Irune García; Javiera Ortega Journal: Int J Environ Res Public Health Date: 2022-09-28 Impact factor: 4.614