Preference-based utility weights for the Individualized Neuromuscular Quality of Life Questionnaire (INQoL), with a focus on non-dystrophic myotonia (NDM).

ABSTRACT:

Introduction

The Individualized Neuromuscular Quality of Life Questionnaire (INQoL) is used to measure quality of life in neuromuscular disorders such as non-dystrophic myotonia (NDM). Here we report methods to estimate utilities, with a focus on NDM, from this questionnaire based on two preference elicitation exercises.

Methods

Eight items from the INQoL were selected with input from three neuromuscular disorder clinical experts with expertise in treating NDM. A discrete choice experiment (DCE) survey of UK general public respondents (n = 508) described outcomes defined by the INQoL items. The same 8 items were also valued using time trade-off (TTO) face-to-face interviews (n = 200). A hybrid regression modelling approach combined both datasets to inform the utility weights

SUBMITTER: Lloyd A 

PROVIDER: S-EPMC11639140 | biostudies-literature | 2024 Nov

REPOSITORIES: biostudies-literature