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

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

*Corresponding author for this work

Research output: Contribution to journalArticle

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 (OpenSPiltSPi 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.

Original languageEnglish (US)
Pages (from-to)801-810
Number of pages10
JournalQuality of Life Research
Volume27
Issue number3
DOIs
StatePublished - Mar 1 2018

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Huntington Disease
Quality of Life
Prodromal Symptoms
Education
Marital Status
Cognition
Psychiatry
Surveys and Questionnaires
Research Personnel

Keywords

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

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

Hahn, E. A., Downing, N. R., Stout, J. C., Paulsen, J. S., Ready, B., Goodnight, S., ... Carlozzi, N. E. (2018). Understanding the need for assistance with survey completion in people with Huntington disease. Quality of Life Research, 27(3), 801-810. https://doi.org/10.1007/s11136-017-1747-6
Hahn, Elizabeth A ; Downing, Nancy R. ; Stout, Julie C. ; Paulsen, Jane S. ; Ready, Becky ; Goodnight, Siera ; Lai, Jin-Shei ; Miner, Jennifer A. ; Carlozzi, Noelle E. / Understanding the need for assistance with survey completion in people with Huntington disease. In: Quality of Life Research. 2018 ; Vol. 27, No. 3. pp. 801-810.
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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 (OpenSPiltSPi 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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Hahn, EA, Downing, NR, Stout, JC, Paulsen, JS, Ready, B, Goodnight, S, Lai, J-S, Miner, JA & Carlozzi, NE 2018, 'Understanding the need for assistance with survey completion in people with Huntington disease', Quality of Life Research, vol. 27, no. 3, pp. 801-810. https://doi.org/10.1007/s11136-017-1747-6

Understanding the need for assistance with survey completion in people with Huntington disease. / Hahn, Elizabeth A; Downing, Nancy R.; Stout, Julie C.; Paulsen, Jane S.; Ready, Becky; Goodnight, Siera; Lai, Jin-Shei; Miner, Jennifer A.; Carlozzi, Noelle E.

In: Quality of Life Research, Vol. 27, No. 3, 01.03.2018, p. 801-810.

Research output: Contribution to journalArticle

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T1 - Understanding the need for assistance with survey completion in people with Huntington disease

AU - Hahn, Elizabeth A

AU - Downing, Nancy R.

AU - Stout, Julie C.

AU - Paulsen, Jane S.

AU - Ready, Becky

AU - Goodnight, Siera

AU - Lai, Jin-Shei

AU - Miner, Jennifer A.

AU - Carlozzi, Noelle E.

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N2 - 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 (OpenSPiltSPi 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.

AB - 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 (OpenSPiltSPi 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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