TY  - JOUR
AU  - Paul, Diane B.
PY  - 2021
DA  - 2021/05/14
TI  - Imagining Life with a Genetic Disorder: The Challenge of Evaluating Health States that Exist from Birth
JO  - OBM Genetics
SP  - 130
VL  - 05
IS  - 02
AB  - This article explores difficulties encountered by those with no personal experience of a chronic disease or disability in accurately evaluating the quality of life with a condition present from birth. In most countries, cost-effectiveness analysis relies on ratings of health states by members of the general population, who must try to imagine what life for those affected is like based on (usually brief) descriptions of the conditions. That task is challenging for reasons that have been well-discussed in the literature. This article employs a detailed case-study of dietary treatment for the genetic disease phenylketonuria to identify additional, unrecognized challenges that arise in the case of conditions experienced from birth (or early childhood) and considers some implications of these difficulties for practices in health-state valuation.
SN  - 2577-5790
UR  - https://doi.org/10.21926/obm.genet.2102130
DO  - 10.21926/obm.genet.2102130
ID  - Paul2021
ER  -