Journal article
Understanding the need for assistance with survey completion in people with Huntington disease
Quality of life research, Vol.27(3), pp.801-810
03/2018
DOI: 10.1007/s11136-017-1747-6
PMCID: PMC5845783
PMID: 29214414
Abstract
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.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.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.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.
Details
- Title: Subtitle
- Understanding the need for assistance with survey completion in people with Huntington disease
- Creators
- Elizabeth Hahn - 0000 0001 2299 3507 grid.16753.36 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 USANancy Downing - grid.416970.d College of Nursing Texas A&M University Health Science Center Bryan TX USAJulie Stout - 0000 0004 1936 7857 grid.1002.3 School of Psychological Sciences, Institute of Cognitive and Clinical Neurosciences Monash University Clayton VIC AustraliaJane Paulsen - 0000 0004 1936 8294 grid.214572.7 Departments of Neurology, Psychiatry, and Psychological and Brain Sciences, Carver College of Medicine University of Iowa Iowa City IA USABecky Ready - Psychological and Brain Sciences University of Massachusetts Amherst MA USASiera Goodnight - 0000000086837370 grid.214458.e Department of Physical Medicine and Rehabilitation, Center for Clinical Outcomes Development and Application (CODA) University of Michigan Ann Arbor MI USAJin-Shei Lai - 0000 0001 2299 3507 grid.16753.36 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 USAJennifer Miner - 0000000086837370 grid.214458.e Department of Physical Medicine and Rehabilitation, Center for Clinical Outcomes Development and Application (CODA) University of Michigan Ann Arbor MI USANoelle Carlozzi - 0000000086837370 grid.214458.e Department of Physical Medicine and Rehabilitation, Center for Clinical Outcomes Development and Application (CODA) University of Michigan Ann Arbor MI USA
- Resource Type
- Journal article
- Publication Details
- Quality of life research, Vol.27(3), pp.801-810
- DOI
- 10.1007/s11136-017-1747-6
- PMID
- 29214414
- PMCID
- PMC5845783
- NLM abbreviation
- Qual Life Res
- ISSN
- 0962-9343
- eISSN
- 1573-2649
- Publisher
- Springer International Publishing
- Grant note
- R01-NS077946 / National Institute of Neurological Disorders and Stroke (http://dx.doi.org/10.13039/100000065) UL1-TR000433 / National Center for Advancing Translational Sciences (http://dx.doi.org/10.13039/100006108)
- Language
- English
- Date published
- 03/2018
- Academic Unit
- Psychiatry; Psychological and Brain Sciences
- Record Identifier
- 9984083890202771
Metrics
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