The authors measured perceived quality of life for 4 disabilities among 450 adults in 3 resource-limited countries, measuring mean utilities using time trade-off, and surveying participants on 35 sociocultural characteristics to compare utilities for disabilities by country and examine associated sociocultural characteristics. Mean utilities were >0 for mild and moderate, but <0 for severe and profound. Utilities differed across countries (P = .007, .000, .017, .000 for mild, moderate, severe, profound, respectively). Vietnamese utilities correlated with residence (P = .03, moderate), education (P = .03, severe), and number of children (P = .03, moderate). Peruvian utilities correlated with education (P = .05, mild; P = .05, severe), experience with disability (P = .001, mild), gender (P = .04, moderate; P = .03, profound), number of hospitalizations (P = .04, severe). In Haiti, the only correlate was rejection (P = .02, moderate). Culture-specific variables differentially shape perceptions of disability in developing countries, thereby affecting cost-effectiveness calculations. Given substantially negative perceptions, reducing major disability would improve cost-effectiveness of health-policy decisions more than reducing mortality.
UNICEF. The State of the World’s Children 2013: Children with Disabilities. New York, NY: United Nations Children’s Fund; May 2013.
2.
GBD 2017 Child and Adolescent Health Collaborators, ReinerRCOlsenHE, et al.Diseases, injuries, and risk factors in child and adolescent health, 1990 to 2017: findings from the Global Burden of Diseases, Injuries, and Risk Factors 2017 Study. JAMA Pediatr. 2019;173(6):e190337. doi:10.1001/jamapediatrics.2019.0337.
3.
MaulikPKDarmstadtGL. Childhood disability in low- and middle-income countries: overview of screening, prevention, services, legislation, and epidemiology. Pediatrics. 2007;120(Suppl 1):S1–S55). doi:10.1542/peds.2007-0043B.
4.
EdwardrajSMumtajKPrasadJHKuruvillaAJacobKS. Perceptions about intellectual disability: a qualitative study from Vellore, South India. J Intellect Disabil Res. 2010;54(8):736–748. doi:10.1111/j.1365-2788.2010.01301.x.
5.
LandryMDRamanSRHarrisE, et al.Exploring the factors that influence the perceptions of disability: a qualitative study of mothers of children with disabilities at a community-based rehabilitation centre in Sri Lanka. WHO South East Asia J Public Health. 2015;4(2):150–158. doi:10.4103/2224-3151.206684.
6.
LiptakGSAccardoPJ. Health and social outcomes of children with cerebral palsy. J Pediatr. 2004;145(2):S36–S41. doi:10.1016/j.jpeds.2004.05.021.
7.
BettsMBGandraSRChengLISzatkowskiATothPP. Differences in utility elicitation methods in cardiovascular disease: a systematic review. J Med Econ. 2018;21:74–84. doi:10.1080/13696998.2017.1379410.
8.
SaigalSStoskopfBLFeenyD, et al.Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. JAMA. 1999;281(21):1991–1997. doi:10.1001/jama.281.21.1991.
9.
SpiegelEJondhaleSBrajkovicI, et al.Valuation of quality of life in pediatric disability in a developing country. J Child Neurol. 2018;33(9):601–609. doi:10.1177/0883073818773941.
10.
Blieden BettsMGandraSRChengL-ISzatkowskiATothPP. Differences in utility elicitation methods in cardiovascular disease: a systematic review. J Med Econ. 2018;21(1):74–84. doi:10.1080/13696998.2017.1379410.
11.
AttemaAEEdelaar-PeetersYVersteeghMMStolkEA. Time trade-off: one methodology, different methods. Eur J Health Econ. 2013;14(suppl 1):S53–S64. doi:10.1007/s10198-013-0508-x.
12.
PatrickDLStarksHECainKCUhlmannRFPearlmanRA. Measuring preferences for health states worse than death. Med Decis Making. 1994;14(1):9–18. doi:10.1177/0272989X9401400102.
13.
MarkidesKSKrauseNMendes de LeonCF. Acculturation and alcohol consumption among Mexican Americans: a three-generation study. Am J Public Health. 1988;78(9):1178–1181. doi:10.2105/ajph.78.9.1178.
14.
MarinGSabogalFVanoss MarinBOtero-SabogalRPerez-StableEJ. Development of a short acculturation scale for Hispanics. Hispan J Behav Sci. 2016;9(2):183–205. doi:10.1177/07399863870092005.
15.
CuellarIArnoldBMaldonadoR. Acculturation rating scale for Mexican Americans-II: a revision of the original ARSMA scale. Hispan J Behav Sci. 1995;17(3):275–304.
16.
GershonRCWagsterMVHendrieHCFoxNACookKFNowinskiCJ. NIH toolbox for assessment of neurological and behavioral function. Neurology. 2013;80(11 suppl 3):S2–S6. doi:10.1212/WNL.0b013e3182872e5f.
17.
VictorsonDManlyJWallner-AllenK, et al.Using the NIH Toolbox in special populations: considerations for assessment of pediatric, geriatric, culturally diverse, non-English-speaking, and disabled individuals. Neurology. 2013;80(11 suppl 3):S13–S19. doi:10.1212/WNL.0b013e3182872e26.
18.
KorenPEDeChilloNFriesenBJ. Measuring empowerment in families whose children have emotional disabilities: a brief questionnaire. Rehab Psych. 1992;37:305–321.
19.
KoenigHGBüssingA. The Duke University Religion Index (DUREL): a five-item measure for use in epidemiological studies. Religions. 2010;1(1):78–85. doi:10.3390/rel1010078.
20.
SaigalSFeenyDRosenbaumP, et al.Self-perceived health status and health-related quality of life of extremely low-birth-weight infants at adolescence. JAMA. 1996:276(6):453–459. doi:10.1001/jama.1996.03540060029031.
21.
LauK-MChowSMKLoSK. Parents’ perception of the quality of life of preschool children at risk or having developmental disabilities. Qual Life Res. 2006;15(7):1133–1141.
22.
RohwerACOladapoOTHofmeyrGJ. Strategies for optimising antenatal corticosteroid administration for women with anticipated preterm birth. Cochrane Database Syst Rev. 2020;5:CD013633. doi:10.1002/14651858.CD013633.
23.
PauliahSSShankaranSWadeACadyEBThayyilS. Therapeutic hypothermia for neonatal encephalopathy in low- and middle-income countries: a systematic review and meta-analysis. PLOS ONE. 2013;8(3):e58834–e58838. doi:10.1371/journal.pone.0058834.
24.
KleinKMcClureEMColaciD, et al.The Antenatal Corticosteroids Trial (ACT): a secondary analysis to explore site differences in a multi-country trial. Reprod Health. 2016;13(1):64–69. doi:10.1186/s12978-016-0179-z.
25.
NeethlingIJelsmaJRammaLSchneiderHBradshawD. Disability weights from a household survey in a low socio-economic setting: how does it compare to the global burden of disease 2010 study?Glob Health Action. 2016;9:31754. doi:10.3402/gha.v9.31754.
26.
ThuyNTMBerryHL. Social capital and mental health among mothers in Vietnam who have children with disabilities. Glob Health Action. 2013;6:18886. doi:10.3402/gha.v6i0.18886.
27.
FangMOremusMTarrideJ-ERainaP, Canadian Willingness-to-Pay Study Group. A comparison of health utility scores calculated using United Kingdom and Canadian preference weights in persons with Alzheimer’s disease and their caregivers. Health Qual Life Outcomes. 2016;14(1):105–108. doi:10.1186/s12955-016-0510-y.
28.
KularatnaSWhittyJAJohnsonNWJayasingheRScuffhamPA. Development of an EORTC-8D utility algorithm for Sri Lanka. Med Decis Making. 2015;35(3):361–370. doi:10.1177/0272989X14559274.
29.
KilingIDueCLiDTurnbullD.Perceptions of disability, environmental risk factors and available services among local leaders and parents of young children with disabilities in West Timor, Indonesia. Disabil Rehabil. 2019;41(20):2421–2432. doi:10.1080/09638288.2018.1466924.
30.
BayatM. The stories of “snake children”: killing and abuse of children with developmental disabilities in West Africa. J Intellect Disabil Res. 2015;59(1):1–10. doi:10.1111/jir.12118.
31.
HawardMFMurphyROLorenzJM. Message framing and perinatal decisions. Pediatrics. 2008;122(1):109–118. doi:10.1542/peds.2007-0620.
32.
SaigalSFeenyDRosenbaumPFurlongWBurrowsEStoskopfB. Self-perceived health status and health-related quality of life of extremely low-birth-weight infants at adolescence. JAMA. 1996;276(6):453–459.
33.
TreleavenEPhamTNLeDNBrooksTNLeHTPartridgeJC. Referral patterns, delays, and equity in access to advanced paediatric emergency care in Vietnam. Int J Equity Health. 2017;16(1):215. doi:10.1186/s12939-017-0703-y.
34.
ShawJWJohnsonJAChenSLevinJRCoonsSJ. Racial/ethnic differences in preferences for the EQ-5D health states: results from the U.S. valuation study. J Clin Epidemiol. 2007;60(5):479–490. doi:10.1016/j.jclinepi.2006.08.008.
35.
GaskinDJFrickKD. Race and ethnic disparities in valuing health. Med Decis Making. 2008;28(1):12–20. doi:10.1177/0272989X07309641.
36.
LamHSWongSPSLiuFYBWongHLFokTFNgPC. Attitudes toward neonatal intensive care treatment of preterm infants with a high risk of developing long-term disabilities. Pediatrics. 2009;123(6):1501–1508. doi:10.1542/peds.2008-2061.
37.
van NootenFEKoolmanXBrouwerWBF. The influence of subjective life expectancy on health state valuations using a 10 year TTO. Health Econ. 2009;18(5):549–558. doi:10.1002/hec.1385.
38.
ThomasKPeterJVChristinaJ, et al.Cost-utility in medical intensive care patients. Rationalizing ongoing care and timing of discharge from intensive care. Ann Am Thorac Soc. 2015;12(7):1058–1065. doi:10.1513/AnnalsATS.201411-527OC.
39.
SimonJPetrouSGrayA. The valuation of prenatal life in economic evaluations of perinatal interventions. Health Econ. 2009;18(4):487–494. doi:10.1002/hec.1375.
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