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

Overview

Journal Pharmacoeconomics

Specialty Pharmacology

Date 2019 Mar 14

PMID 30864066

Citations 13

Authors

Clare C Brown

J Mick Tilford

Nalin Payakachat

D Keith Williams

Karen A Kuhlthau

Jeffrey M Pyne

Renske J Hoefman

Werner B F Brouwer

Affiliations

Soon will be listed here.

Abstract

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.

Citing Articles

The economic impact of caregiving for individuals with Angelman syndrome in the United States: results from a caregiver survey.

Jarvis J, Chertavian E, Buessing M, Renteria T, Tu L, Hoffer L Orphanet J Rare Dis. 2025; 20(1):82.

PMID: 39985061 PMC: 11846284. DOI: 10.1186/s13023-025-03551-4.

EQ-5D-5L or EQ-HWB-S: Which is the Better Instrument for Capturing Spillover Effects in Parental Carers of Children with COVID-19?.

Zhou W, Ding B, Busschbach J, Herdman M, Yang Z, Lu Y Pharmacoeconomics. 2025; .

PMID: 39907985 DOI: 10.1007/s40273-025-01473-4.

Assessing the psychometric performance of the EQ-5D-5L among informal caregivers of people with dementia.

Sokolova V, Faller J, Mohamad Asfia S, Engel L Qual Life Res. 2024; 33(10):2693-2704.

PMID: 39046615 PMC: 11452493. DOI: 10.1007/s11136-024-03737-6.

Sleeping Sound Autism Spectrum Disorder (ASD): Cost-Effectiveness of a Brief Behavioural Sleep Intervention in Primary School-Aged Autistic Children.

Engel L, Chiotelis O, Papadopoulos N, Hiscock H, Howlin P, McGillivray J J Autism Dev Disord. 2024; .

PMID: 38833029 DOI: 10.1007/s10803-024-06422-2.

Research trends in contemporary health economics: a scientometric analysis on collective content of specialty journals.

Zwack C, Haghani M, de Bekker-Grob E Health Econ Rev. 2024; 14(1):6.

PMID: 38270771 PMC: 10809694. DOI: 10.1186/s13561-023-00471-6.

References

Varni J, Seid M, Kurtin P . PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care. 2001; 39(8):800-12. DOI: 10.1097/00005650-200108000-00006. View

Al-Janabi H, Flynn T, Coast J . QALYs and carers. Pharmacoeconomics. 2011; 29(12):1015-23. DOI: 10.2165/11593940-000000000-00000. View

Magliano L, Fiorillo A, De Rosa C, Malangone C, Maj M . Family burden in long-term diseases: a comparative study in schizophrenia vs. physical disorders. Soc Sci Med. 2005; 61(2):313-22. DOI: 10.1016/j.socscimed.2004.11.064. View

Sanders G, Neumann P, Basu A, Brock D, Feeny D, Krahn M . Recommendations for Conduct, Methodological Practices, and Reporting of Cost-effectiveness Analyses: Second Panel on Cost-Effectiveness in Health and Medicine. JAMA. 2016; 316(10):1093-103. DOI: 10.1001/jama.2016.12195. View

Magliano L, Fiorillo A, Malangone C, De Rosa C, Maj M . Social network in long-term diseases: a comparative study in relatives of persons with schizophrenia and physical illnesses versus a sample from the general population. Soc Sci Med. 2005; 62(6):1392-402. DOI: 10.1016/j.socscimed.2005.08.003. View

Sprangers M, Groenvold M, Arraras J, Franklin J, Te Velde A, Muller M . The European Organization for Research and Treatment of Cancer breast cancer-specific quality-of-life questionnaire module: first results from a three-country field study. J Clin Oncol. 1996; 14(10):2756-68. DOI: 10.1200/JCO.1996.14.10.2756. View

Krol M, Papenburg J, van Exel J . Does including informal care in economic evaluations matter? A systematic review of inclusion and impact of informal care in cost-effectiveness studies. Pharmacoeconomics. 2014; 33(2):123-35. DOI: 10.1007/s40273-014-0218-y. View

Tilford J, Payakachat N . Progress in measuring family spillover effects for economic evaluations. Expert Rev Pharmacoecon Outcomes Res. 2014; 15(2):195-8. PMC: 4736135. DOI: 10.1586/14737167.2015.997216. View

Craig B, Pickard A, Stolk E, Brazier J . US valuation of the SF-6D. Med Decis Making. 2013; 33(6):793-803. PMC: 3740344. DOI: 10.1177/0272989X13482524. View

10.

Akehurst R, Brazier J, Mathers N, OKeefe C, Kaltenthaler E, Morgan A . Health-related quality of life and cost impact of irritable bowel syndrome in a UK primary care setting. Pharmacoeconomics. 2002; 20(7):455-62. DOI: 10.2165/00019053-200220070-00003. View

11.

Payakachat N, Tilford J, Brouwer W, van Exel N, Grosse S . Measuring health and well-being effects in family caregivers of children with craniofacial malformations. Qual Life Res. 2011; 20(9):1487-95. DOI: 10.1007/s11136-011-9870-2. View

12.

Hoefman R, van Exel J, Brouwer W . Measuring Care-Related Quality of Life of Caregivers for Use in Economic Evaluations: CarerQol Tariffs for Australia, Germany, Sweden, UK, and US. Pharmacoeconomics. 2017; 35(4):469-478. PMC: 5357482. DOI: 10.1007/s40273-016-0477-x. View

13.

Shattuck P, Seltzer M, Greenberg J, Orsmond G, Bolt D, Kring S . Change in autism symptoms and maladaptive behaviors in adolescents and adults with an autism spectrum disorder. J Autism Dev Disord. 2006; 37(9):1735-47. PMC: 3265360. DOI: 10.1007/s10803-006-0307-7. View

14.

Brouwer W, van Exel N, van Gorp B, Redekop W . The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res. 2006; 15(6):1005-21. DOI: 10.1007/s11136-005-5994-6. View

15.

Tilford J, Payakachat N, Kuhlthau K, Pyne J, Kovacs E, Bellando J . Treatment for Sleep Problems in Children with Autism and Caregiver Spillover Effects. J Autism Dev Disord. 2015; 45(11):3613-23. PMC: 4609586. DOI: 10.1007/s10803-015-2507-5. View

16.

Khanna R, Jariwala K, Bentley J . Health utility assessment using EQ-5D among caregivers of children with autism. Value Health. 2013; 16(5):778-88. DOI: 10.1016/j.jval.2013.04.007. View

17.

Owens J, Spirito A, McGuinn M . The Children's Sleep Habits Questionnaire (CSHQ): psychometric properties of a survey instrument for school-aged children. Sleep. 2001; 23(8):1043-51. View

18.

Bhadhuri A, Jowett S, Jolly K, Al-Janabi H . A Comparison of the Validity and Responsiveness of the EQ-5D-5L and SF-6D for Measuring Health Spillovers: A Study of the Family Impact of Meningitis. Med Decis Making. 2017; 37(8):882-893. DOI: 10.1177/0272989X17706355. View

19.

Janssen M, Pickard A, Golicki D, Gudex C, Niewada M, Scalone L . Measurement properties of the EQ-5D-5L compared to the EQ-5D-3L across eight patient groups: a multi-country study. Qual Life Res. 2012; 22(7):1717-27. PMC: 3764313. DOI: 10.1007/s11136-012-0322-4. View

20.

Brazier J, Roberts J, Tsuchiya A, Busschbach J . A comparison of the EQ-5D and SF-6D across seven patient groups. Health Econ. 2004; 13(9):873-84. DOI: 10.1002/hec.866. View