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Geertje van der Sterre, H.M. van der Meulen-Schot, E. Abma-Bustraan, E.S. van de Graaf, Huibert Jan Simonsz; Intergenerational utility in parents of children with amblyopia. Invest. Ophthalmol. Vis. Sci. 2022;63(7):1250 – A0358.
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© ARVO (1962-2015); The Authors (2016-present)
We measured the loss of disease-related quality of life in parents whose child was treated for amblyopia.
Eligible were the parents of children age three to six who were first treated for amblyopia with occlusion therapy.Interviews took on average 20 minutes and were conducted by telephone after 6 weeks of occlusion therapy.Parents were asked how many years of their life they would be willing to give up (Time Trade-Off) in exchange for a completely cured amblyopia with their child. Answers were obtained using a staircase forced choice procedure. Options were 1 day, 1 week, 1 month, 3 months, 6 months, 1, 2, 5, 10, 20, 30 years.Secondly, they were asked how much risk of unilateral blindness they are willing to take (Standard Gamble) in exchange for a completely cured amblyopia with their child. This question asked participants to imagine they could give their child good vision in both eyes, by themselves undergoing a hypothetical procedure that would accomplish this, but also carried the risk of blinding one of their own eyes.
So far, we have been able to interview 19 parents.For TTO, widely differing options over the entire range from 0 to 30 years were chosen. The average was 4.8 years, median 5 years, standard deviation 6.8 years.For SG, 5 out of 12 parents presented with this question were willing to risk the sight in one eye (10% and 1%), 4 opted for risks of 0.01% or 0.005%, 3 for no risk.No correlation existed between these scores and the clinical variables of the child. However, parents who had amblyopia themselves were willing to take a higher risk in SG, and parents who had a family member with amblyopia were willing to sacrifice more life years with TTO.
It is surprising to see how much of their life or vision parents are willing to give up for a healthy child. These results may seem trivial as most parents wish the best for their child anyway. However, parents and not their children vote and thereby decide on the availability of screening programs and amblyopia treatment. Hence, intergenerational utility should be included as a component in their cost-effectiveness analysis.
This abstract was presented at the 2022 ARVO Annual Meeting, held in Denver, CO, May 1-4, 2022, and virtually.
Standard Gamble and Time Trade-Off paired scores per parent, on logarithmic scales. This concerns the subset of parents (12) who were presented with both questions.
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