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Qual Life Res. 2018 Mar;27(3):801-810. doi: 10.1007/s11136-017-1747-6. Epub 2017 Dec 6.

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

Author information

1
Department of Medical Social Sciences and Center for Patient-Centered Outcomes, Northwestern University Feinberg School of Medicine, 633 N. St. Clair St., Suite 1900, Chicago, IL, 60611, USA. e-hahn@northwestern.edu.
2
College of Nursing, Texas A&M University Health Science Center, Bryan, TX, USA.
3
School of Psychological Sciences, Institute of Cognitive and Clinical Neurosciences, Monash University, Clayton, VIC, Australia.
4
Departments of Neurology, Psychiatry, and Psychological and Brain Sciences, Carver College of Medicine, University of Iowa, Iowa City, IA, USA.
5
Psychological and Brain Sciences, University of Massachusetts, Amherst, MA, USA.
6
Department of Physical Medicine and Rehabilitation, Center for Clinical Outcomes Development and Application (CODA), University of Michigan, Ann Arbor, MI, USA.
7
Department of Medical Social Sciences and Center for Patient-Centered Outcomes, Northwestern University Feinberg School of Medicine, 633 N. St. Clair St., Suite 1900, Chicago, IL, 60611, USA.

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.

KEYWORDS:

Health-related quality of life; Huntington disease; Patient-reported outcomes; Surveys and questionnaires

PMID:
29214414
PMCID:
PMC5845783
[Available on 2019-03-01]
DOI:
10.1007/s11136-017-1747-6
[Indexed for MEDLINE]

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