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Gepubliceerd in: Quality of Life Research 3/2018

06-12-2017

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

Auteurs: Elizabeth A. Hahn, Nancy R. Downing, Julie C. Stout, Jane S. Paulsen, Becky Ready, Siera Goodnight, Jin-Shei Lai, Jennifer A. Miner, Noelle E. Carlozzi

Gepubliceerd in: Quality of Life Research | Uitgave 3/2018

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Abstract

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. Individuals across the prodromal and diagnosed disease severity spectrum (n = 532) completed surveys by computer, and reported the amount and type of assistance they received.

Results

Some participants (n = 56; 10.5%) did not complete all surveys; this group had larger proportions with late stage disease, racial/ethnic minority status, low education and single marital status, and poorer motor, independence and cognitive function compared to those who completed all surveys (n = 476). Overall, 72% of individuals did not receive assistance, 11% received computer assistance only, and 17% received assistance answering the survey questions. The majority of late stage individuals (78%) received some assistance compared to early stage (29%) and prodromal individuals (< 1%). Those who received assistance had higher proportions with late stage disease, were older, had less education, and had poorer functional and cognitive skills. Before and after adjustment for sociodemographic and clinical characteristics, those who received assistance had poorer scores on some HRQOL outcomes than those who did not receive assistance.

Conclusions

Computer-based assessments are feasible for many persons with HD, although other methods may also be needed. Clinicians and researchers should develop strategies to assist people with HD to complete HRQOL surveys.
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Metagegevens
Titel
Understanding the need for assistance with survey completion in people with Huntington disease
Auteurs
Elizabeth A. Hahn
Nancy R. Downing
Julie C. Stout
Jane S. Paulsen
Becky Ready
Siera Goodnight
Jin-Shei Lai
Jennifer A. Miner
Noelle E. Carlozzi
Publicatiedatum
06-12-2017
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 3/2018
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-017-1747-6

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