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The well-being of caregivers of children with spina bifida and other conditions is an important topic. We interviewed the primary caregivers of 98 children aged 0-17 years with spina bifida sampled from a population-based birth defects registry in Arkansas and the caregivers of 49 unaffected children. Measures of caregiver well-being were compared between the groups and by level of lesion (sacral, lower lumbar, and upper lumbar/thoracic). We performed linear and logistic regression analysis to test the associations controlling for other characteristics. Among caregivers of children with spina bifida, the average number of hours of sleep was significantly less than reported by other caregivers and was associated with lesion level among children less than 7 years of age. Significant associations, often varying by child age, were also found for the caregiver's reports of lower Quality of Well-Being (QWB) score, often feeling blue, rarely feeling happy, fair or poor health, lack of leisure days, and not hosting friends, but no significant association was found with not visiting friends. The intensive long-term care required by children with spina bifida, particularly by those with higher lesions, can negatively impact caregiver health and well-being. Support for these caregivers is needed.

The aim of this study was to compare two preference-weighted, caregiver-reported measures of health-related quality of life for children with permanent childhood hearing loss to determine whether cost-effectiveness analysis applied to deaf and hard of hearing populations will provide similar answers based on the choice of instrument. Caregivers of 103 children in Arkansas, USA, with documented hearing loss completed the Quality of Well-Being Scale (QWB) and the Health Utilities Index Mark 3 (HUI3) to describe the health status of their children. Audiology and other clinical measures were abstracted from medical records. Mean scores were compared overall and by degree of hearing loss. Linear regression was used to correlate preference scores with a four-frequency pure-tone average, cochlear implant status, and other factors. Mean preference scores for the QWB and HUI3 were similar (0.601 and 0.619, respectively) although the HUI3 demonstrated a wider range of values (−0.132 to 1.000) compared to the QWB (0.345–0.854) and was more sensitive to mild hearing loss. Both measures correlated with the pure-tone average, were negatively associated with comorbid conditions and positively associated with cochlear implant status. In the best fitting regression models, similar estimates for cochlear implant status and comorbid conditions were obtained from the two measures. Despite considerable differences in the HUI3 and the QWB scale, we found agreement between the two instruments at the mean, but clinically important differences across a number of measures. The two instruments are likely to yield different estimates of cost-effectiveness ratios, especially for interventions involving mild to moderate hearing loss. [ABSTRACT FROM AUTHOR]

Cost-effectiveness evaluations of interventions to prevent or treat spina bifida require quality of life information measured as preference scores. Preference scores of caregivers also may be relevant. This study tested whether the preference scores of children with spina bifida and their caregivers would decrease as disability in the child increased. Families of children aged 0-17 with spina bifida (N = 98) were identified using a birth defect surveillance system in the state of Arkansas. Primary caregivers of children with spina bifida identified other families with an unaffected child (N = 49). Preference scores for child health states were determined using the Health Utilities Index--Mark 2 (HUI2). Caregiver preference scores were determined using the Quality of Well-Being (QWB) scale. Children with spina bifida were categorized into three disability levels according to the location of the child's lesion. Mean preference scores declined for both affected children and the primary caregiver as disability in the child increased. In multivariate analysis, the preference score of the child was a significant and positive predictor of the primary caregiver's preference score. A more modest association was found for caregiver health preference scores by lesion location. The findings can inform cost-effectiveness evaluations of interventions to treat or prevent spina bifida. [ABSTRACT FROM AUTHOR]

Purpose: This research explores the sensitivity of three generic instruments for preference-weighting health states of family caregivers of children with craniofacial malformations (CFM). We also examine the construct validity of the new CarerQol instrument measuring caregiver burden and general quality of life., Methods: Caregivers of children born with CFM were identified through the Arkansas Reproductive Health Monitoring System. A mailed survey included the HUI3, the SF-6D, the QWB-SA to measure health-related quality of life; the CES-D measuring depressive symptoms as well as the SRB scale, and the CarerQol. The HUI3, the SF-6D, and the QWB-SA were examined in relation to the CES-D the SRB, the CarerQol, and each other., Results: A total of 65 (63%) parents of children (≤17 years) responded. The mean SF-6D, HUI3, and QWB-SA scores were 0.81 (SD = 0.13), 0.84 (SD = 0.23), and 0.67 (SD = 0.14), respectively. The mean CES-D score was 13.3 (SD = 13.4) and 28.6% of the sample met a threshold for depressive symptoms (CES-D ≥ 16). The mean CarerQol-VAS and SRB scores were 7.5 (SD = 2.3) and 15.1 (SD = 23.5), respectively. The Spearman correlations (ρ) of the HUI3 and the SF-6D with the CES-D were similar (-0.81 and -0.76) while the ρ was lower (-0.57) for the QWB-SA. Preference-weighted scores of caregivers with CES-D scores ≥ 16 differed significantly for both the SF-6D and the HUI3, but not the QWB-SA. All three generic instruments showed moderate to strong relationships with the CarerQol., Conclusions: The HUI3 and SF-6D were more sensitive predictors of depressive symptoms in this caregiver sample than was the QWB-SA. The CarerQol showed good construct validity and may be useful for measuring well-being effects associated with caregiving.

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.