Understanding the need for assistance with survey completion in people with Huntington disease.

Purpose: In Huntington disease (HD), motor, cognitive, and psychiatric changes can have a detrimental impact on health-related quality of life (HRQOL). The purpose of this paper is to describe the extent and type of assistance needed to complete online HRQOL surveys, and the impact of assistance on HRQOL scores.

Methods: A patient-reported outcome measurement system was developed for HD-specific HRQOL.