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Whose Quality of Life? Ethical Implications in Patient-Reported Health Outcome Measurement

Hagell, Peter LU ; Reimer, Jan LU and Nyberg, Per LU (2009) In Value in Health 12(4). p.613-617
Abstract
Patient-reported health status questionnaires intend to assess illness and therapy from the patients' perspective. To provide fair and valid assessments, they should be equally relevant to major subsets of respondents. Furthermore, disease-specific measures are assumed to be perceived as more relevant than generic ones. This study assessed these assumptions among people with Parkinson's disease. Cross-sectional data from 202 people with Parkinson's disease (54% men; mean age, 70) were analyzed regarding patient-rated relevance and predictors of patient-rated poor relevance of two generic [the 36-item Short Form Health Survey (SF-36) and Nottingham Health Profile (NHP)] and one disease-specific [Parkinson's Disease Questionnaire (PDQ-39)]... (More)
Patient-reported health status questionnaires intend to assess illness and therapy from the patients' perspective. To provide fair and valid assessments, they should be equally relevant to major subsets of respondents. Furthermore, disease-specific measures are assumed to be perceived as more relevant than generic ones. This study assessed these assumptions among people with Parkinson's disease. Cross-sectional data from 202 people with Parkinson's disease (54% men; mean age, 70) were analyzed regarding patient-rated relevance and predictors of patient-rated poor relevance of two generic [the 36-item Short Form Health Survey (SF-36) and Nottingham Health Profile (NHP)] and one disease-specific [Parkinson's Disease Questionnaire (PDQ-39)] health status questionnaire. There were no differences in relevance ratings across the questionnaires. Poorer overall quality of life [odds ratio (OR), 2.459] and mental health (OR, 1.023) were associated with poorer patient-rated relevance of the SF-36, and higher age was associated with poorer patient-rated relevance of the PDQ-39 (OR, 1.040). No significant predictors were found for the NHP. The PDQ-39 failed to meet the assumption that disease-specific scales are more relevant than generic ones. Nevertheless, the most important implication of this study is an ethical one. Because the relevance of the SF-36 and PDQ-39 is perceived as poorer by those who fare least well and by older people, these scales may not reflect the perspectives of these groups. This challenges bioethical principles and threatens scientific validity. Perceived relevance of patient-centered outcomes needs to be considered, or the voice of vulnerable groups may be silenced, fair inferences prohibited, and opportunities for improved care lost. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
ethics, clinical research, outcomes research, quality of life, Parkinson's disease
in
Value in Health
volume
12
issue
4
pages
613 - 617
publisher
Wiley-Blackwell
external identifiers
  • wos:000266467800030
  • pmid:19900259
  • scopus:66249143010
ISSN
1098-3015
DOI
10.1111/j.1524-4733.2008.00488.x
language
English
LU publication?
yes
id
a18b33f1-f8d7-4b92-912c-1ddfd8aafac1 (old id 1442431)
alternative location
http://www.ncbi.nlm.nih.gov/pubmed/19900259?dopt=Abstract
date added to LUP
2009-07-24 13:05:44
date last changed
2017-07-02 03:35:59
@article{a18b33f1-f8d7-4b92-912c-1ddfd8aafac1,
  abstract     = {Patient-reported health status questionnaires intend to assess illness and therapy from the patients' perspective. To provide fair and valid assessments, they should be equally relevant to major subsets of respondents. Furthermore, disease-specific measures are assumed to be perceived as more relevant than generic ones. This study assessed these assumptions among people with Parkinson's disease. Cross-sectional data from 202 people with Parkinson's disease (54% men; mean age, 70) were analyzed regarding patient-rated relevance and predictors of patient-rated poor relevance of two generic [the 36-item Short Form Health Survey (SF-36) and Nottingham Health Profile (NHP)] and one disease-specific [Parkinson's Disease Questionnaire (PDQ-39)] health status questionnaire. There were no differences in relevance ratings across the questionnaires. Poorer overall quality of life [odds ratio (OR), 2.459] and mental health (OR, 1.023) were associated with poorer patient-rated relevance of the SF-36, and higher age was associated with poorer patient-rated relevance of the PDQ-39 (OR, 1.040). No significant predictors were found for the NHP. The PDQ-39 failed to meet the assumption that disease-specific scales are more relevant than generic ones. Nevertheless, the most important implication of this study is an ethical one. Because the relevance of the SF-36 and PDQ-39 is perceived as poorer by those who fare least well and by older people, these scales may not reflect the perspectives of these groups. This challenges bioethical principles and threatens scientific validity. Perceived relevance of patient-centered outcomes needs to be considered, or the voice of vulnerable groups may be silenced, fair inferences prohibited, and opportunities for improved care lost.},
  author       = {Hagell, Peter and Reimer, Jan and Nyberg, Per},
  issn         = {1098-3015},
  keyword      = {ethics,clinical research,outcomes research,quality of life,Parkinson's disease},
  language     = {eng},
  number       = {4},
  pages        = {613--617},
  publisher    = {Wiley-Blackwell},
  series       = {Value in Health},
  title        = {Whose Quality of Life? Ethical Implications in Patient-Reported Health Outcome Measurement},
  url          = {http://dx.doi.org/10.1111/j.1524-4733.2008.00488.x},
  volume       = {12},
  year         = {2009},
}