Labor Market Productivity Costs for Caregivers of Children with Spina Bifida: A Population-Based Analysis

Abstract

Background. Caregiver productivity costs are an important component of the overall cost of care for individuals with birth defects and developmental disabilities, yet few studies provide estimates for use in economic evaluations. Objective. This study estimates labor market productivity costs for caregivers of children and adolescents with spina bifida. Methods. Case families were recruited from a state birth defects registry in Arkansas. Primary caregivers of children with spina bifida (N = 98 ) reported their employment status in the past year and demographic characteristics. Controls were abstracted from the Current Population Survey covering the state of Arkansas for the same time period (N = 416 ). Estimates from regression analyses of labor market outcomes were used to calculate differences in hours worked per week and lifetime costs. Results. Caregivers of children with spina bifida worked an annual average of 7.5 to 11.3 hours less per week depending on the disability severity. Differences in work hours by caregivers of children with spina bifida translated into lifetime costs of $133,755 in 2002 dollars using a 3% discount rate and an age- and sex-adjusted earnings profile. Including caregivers' labor market productivity costs in prevention effectiveness estimates raises the net cost savings per averted case of spina bifida by 48% over the medical care costs alone. Conclusions. Information on labor market productivity costs for caregivers can be used to better inform economic evaluations of prevention and treatment strategies for spina bifida. Cost-effectiveness calculations that omit caregiver productivity costs substantially overstate the net costs of the intervention and underestimate societal value.

Resource utilization and productivity loss in persons with spina bifida − an observational study of patients in a tertiary urology clinic in Germany

“…Prior research indicates that healthcare costs (and thus utilization) are consistently identified as the main cost driver of the overall burden, which mirrors findings in this study . A literature review of burden and cost‐of‐illness studies reported that the lifetime direct medical cost for those diagnosed with NTDs (including SB) is substantial, with the majority of costs being for inpatient care, treatment at initial diagnosis in childhood and comorbidities in adult life .…”

Retrospective Assessment of Cost Savings From Prevention

“…In a population-based 2001–2002 survey of Arkansas families with children and adolescents with spina bifida, 24.5% had upper-level lesions, which did not vary significantly by age. 28,34 Unpublished cross-sectional data from the National Spina Bifida Patient Registry 35 indicate that upper-level lesions are very common among adolescents and adults with spina bifida born prior to 1999 and less common among younger children (R Valdez on behalf of the CDC National Spina Bifida Patient Registry team, personal communication, 2014).…”

“…28 That study estimated that each live-born spina bifida case had a discounted present value of avoided lost parental economic output that of approximately $159,000 in 2005 dollars, 28 which was adjusted to 2014 dollars (Table 1) and for increased child survival.…”

Employment impact and financial burden for families of children with fragile X syndrome: findings from the National Fragile X Survey

“…This differed from findings of a study of families of children and adolescents with spina bifida that both employment restrictions and other caregiving effects were highest when the child who was affected was younger than 6 years of age and diminished as the child matured (Grosse et al . 2009; Tilford et al . 2009).…”