Valuation of Quality of Life in Pediatric Disability in a Developing Country. (August 2018)

• Record Type: Journal Article
• Authors: Spiegel, Elizabeth; Jondhale, Sunil; Brajkovic, Ivana; Nesbit, Kathryn C.; Allen, Isabel E.; Bhutani, Vinod; Kumar, Praveen; Partridge, John Colin
• Is Part Of: Journal of child neurology. Volume 33:Number 9(2018:Sep.)
• Page Start: 601
• Page End: 609
• Publication Date: 2018-08
• Subjects: utilities -- disability -- quality of life -- global health; Nervous system -- Diseases -- Periodicals; 618.928
• DOI: 10.1177/0883073818773941
• Languages: English
• ISSNs: 0883-0738

Abstract

This article assessed how Indian providers and mothers value quality of life in pediatric disabilities, hypothesizing lower values with increasing disability, lower values among providers than mothers, and lower values among mothers with versus mothers without a disabled child. We asked 175 participants: "If born tomorrow, how many years of a disabled life ( y ) would you trade to avoid life-long disability" for 4 hypothetical disabilities, calculating "utility" scores as: (life span – y ) / life span, where death = 0 and full life without disability = 1. Providers' utilities were 0.67 (mild), 0.18 (moderate), –0.70 (severe), and –0.60 (profound); 0.67, 0, –0.77, and –0.88 for mothers without and 0.38, –0.49, –0.86, and –0.87 for mothers with a disabled child. Mothers without reported lower utilities than providers (severe and profound disability [ P ≤ .03]), and higher utilities than mothers (for mild and moderate disability [ P < .001]). Major disability is valued as a fate worse than death in India.