Health Utility Assessment Using EQ-5D among Caregivers of Children with Autism

Khanna, Rahul; Jariwala, Krutika; Bentley, John P.

doi:10.1016/j.jval.2013.04.007

Cited by 23 publications

(24 citation statements)

References 36 publications

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“…Overall, half of all DMD caregivers in our sample indicated being moderately or extremely anxious or depressed, and we also found the mental health summary score from the SF-12 to be significantly lower than general population reference data. These result confirms previous findings of elevated risks of depression and distress reported in caregivers to children with DMD and Becker muscular dystrophy [ 15 – 17 ], type 1 diabetes [ 32 ], and autism [ 33 ], as well as parenting stress in pediatric chronic illnesses [ 34 ]. We found the prevalence of anxiety and depression to be comparable over the course of disease progression but strongly associated with the health and mental state of the patient as perceived by the caregiver.…”

Section: Discussionsupporting

confidence: 91%

Quantifying the burden of caregiving in Duchenne muscular dystrophy

et al. 2016

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Duchenne muscular dystrophy (DMD) is a rare pediatric neuromuscular disease associated with progressive muscle degeneration and extensive care needs. Our objective was to estimate the caregiver burden associated with DMD. We made cross-sectional assessments of caregiver health-related quality of life (HRQL) and burden using the EuroQol EQ-5D, a Visual Analogue Scale (VAS), the SF-12 Health Survey, and the Zarit Caregiver Burden Interview (ZBI) administered online. Results were stratified by disease stage (early/late ambulatory/non-ambulatory) and caregivers’ rating of patients’ health and mental status. In total, caregivers to 770 patients participated. Mean EQ-5D utility ranged between 0.85 (95 % CI 0.82–0.88) and 0.77 (0.74–0.80) across ambulatory classes and 0.88 (0.85–0.90) and 0.57 (0.39–0.74) across caregivers’ rating of patients’ health and mental status. Mean VAS score was 0.74 (0.73–0.75), mean SF-12 Mental Health Component Summary score 44 (43–45), and mean ZBI score 29 (28–30). Anxiety and depression, recorded in up to 70 % of caregivers depending on patients’ health and mental status, was significantly associated with annual household cost burden (>$5000 vs. <$1000, odds ratio 1.76, 95 % CI 1.18–2.63) and hours of leisure time devoted to informal care per week (25–50 vs. <25 h 2.01, 1.37–2.94; >50 vs. <25 h 3.35, 2.32–4.83) (p < 0.007). We show that caring for a person with DMD can be associated with a substantial burden and impaired HRQL. Our findings suggest that caregivers to patients with DMD should be screened for depression and emphasize the need for a holistic approach to family mental health in the context of chronic childhood disease.Electronic supplementary materialThe online version of this article (doi:10.1007/s00415-016-8080-9) contains supplementary material, which is available to authorized users.

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Section: Discussionsupporting

confidence: 91%

Quantifying the burden of caregiving in Duchenne muscular dystrophy

et al. 2016

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“…QOL was assessed using the European Quality of Life 5 Dimensions (EQ-5D) [ 21 , 22 ] and QOL Questionnaire for Cancer Patients Treated with Anticancer Drugs (QOL-ACD) [ 23 ]. The EQ-5D is widely used in clinical studies and health status surveys targeting the general population as a comprehensive scale based on preferences to assess cardinal changes in level of health [ 24 , 25 ]. The questionnaire analyzes health state over 5 dimensions: mobility, personal care, usual activities, pain/discomfort, and anxiety/depression.…”

Section: Methodsmentioning

confidence: 99%

The Impact of Outpatient Chemotherapy-Related Adverse Events on the Quality of Life of Breast Cancer Patients

et al. 2015

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The objective of our study was to clarify the impact of adverse events associated with the initial course of outpatient chemotherapy on the quality of life of breast cancer patients. We conducted a survey to assess the quality of life in 48 breast cancer patients before and after receiving their first course of outpatient chemotherapy at Gifu Municipal Hospital. Patients completed the European Quality of Life 5 Dimensions and Quality of Life Questionnaire for Cancer Patients Treated with Anticancer Drugs before and after 1 course of outpatient chemotherapy. European Quality of Life 5 Dimensions utility value and Quality of Life Questionnaire for Cancer Patients Treated with Anticancer Drugs total score decreased significantly after chemotherapy (p<0.001 and p = 0.018, respectively). The mean scores for the activity, physical condition, and psychological condition subscales of the Quality of Life Questionnaire for Cancer Patients Treated with Anticancer Drugs decreased significantly after chemotherapy (p = 0.003, p<0.001, and p = 0.032, respectively), whereas the social relationships score increased significantly (p<0.001). Furthermore, in the evaluation of quality of life according to individual adverse events, the decrease in quality of life after chemotherapy in terms of the European Quality of Life 5 Dimensions utility value and the Quality of Life Questionnaire for Cancer Patients Treated with Anticancer Drugs total score was greater in anorexic patients than in non-anorexic patients (p = 0.009 and p<0.001, respectively). This suggests that anorexia greatly reduces quality of life. Our findings reveal that anticancer drug-related adverse events, particularly anorexia, reduce overall quality of life following the first course of outpatient chemotherapy in current breast cancer patients. These findings are extremely useful and important in understanding the impact of anticancer drug-related adverse events on quality of life.

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“…Family and caregiver spillover effects, in terms of health and well-being, may be particularly pronounced in child health interventions [ 20 – 22 ] and for mental health conditions where social support systems may be lacking [ 23 , 24 ]. Interventions for children with autism spectrum disorder (ASD) have the potential for substantial spillover effects in caregivers and family members due to an increased prevalence of psychiatric and medical co-morbidities such as anxiety, behavioral problems, sleep disturbance, and cognitive issues [ 25 – 27 ]. Preventing symptoms of ASD in the child is thus likely to improve family and caregiver health and reduce burden [ 22 ].…”

Section: Introductionmentioning

confidence: 99%

Measuring Health Spillover Effects in Caregivers of Children with Autism Spectrum Disorder: A Comparison of the EQ-5D-3L and SF-6D

et al. 2019

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Background and Objective Healthcare interventions that improve the health of children with autism spectrum disorder (ASD) have the potential to affect the health of caregivers. This study compares the three-level EuroQoL-5 Dimension (EQ-5D-3L) and the Short Form-6 Dimension (SF-6D) in their ability to value such spillover effects in caregivers. Methods Clinical data collected from two Autism Treatment Network (ATN) sites was combined with survey data of caregivers of children diagnosed with ASD. Caregivers completed instruments by proxy describing child health and completed the EQ-5D-3L and SF-6D preference-weighted instruments to describe their own health. Results There was a strong correlation between the health utility scores of the two preference-weighted instruments ( ρ = 0.6172, p < 0.001) measuring caregiver health-related quality of life. There was a similar correlation between both the SF-6D and EQ-5D-3L scores with a previously validated care-related quality of life measure (Care-related Quality of Life instrument [CarerQol-7D]) ( ρ = 0.569, p < 0.001 and ρ = 0.541, p < 0.001, respectively). The mean SF-6D scores for caregivers differed significantly in relation to four of the five child health or behavior measures whereas the EQ-5D-3L differed for only two of them. Conclusions Health utility values of caregivers for children with ASD vary by the health characteristics of the child, suggesting significant potential for spillover effects. The comparison of the EQ-5D-3L and SF-6D demonstrated that both instruments can be used to estimate spillover effects of interventions to improve child health, but the SF-6D exhibited greater sensitivity to child health among children with ASD. Electronic supplementary material The online version of this article (10.1007/s40273-019-00789-2) contains supplementary material, which is available to authorized users.

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Health Utility Assessment Using EQ-5D among Caregivers of Children with Autism

Abstract: Autism caregivers had lower health utility than did the general adult US population. There is an immediate need to address health concerns among this growing population.

Cited by 23 publications

References 36 publications

Quantifying the burden of caregiving in Duchenne muscular dystrophy

Quantifying the burden of caregiving in Duchenne muscular dystrophy

The Impact of Outpatient Chemotherapy-Related Adverse Events on the Quality of Life of Breast Cancer Patients

Measuring Health Spillover Effects in Caregivers of Children with Autism Spectrum Disorder: A Comparison of the EQ-5D-3L and SF-6D

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