The DOI matches its Crossref record; 33 of the 33 references it cites were found in a registry or an index.
Seeking the Patient's Perspective: A Qualitative Assessment of EuroQol, COOP-WONCA Charts and MYMOP
Abstract
An outcome questionnaire that is patient-centred should encompass the aims, values and treatment effects that are prioritised by individuals, and should enable each individual to provide an unambiguous assessment of change over time. There is little evidence about how well outcome questionnaires perform in this regard. This paper describes how interviews that combined in-depth enquiry and cognitive techniques were used to explore patients' experiences of completing three outcome questionnaires over a 6 month period. The 23 interviewees all had chronic disease and were receiving acupuncture treatment for the first time. Many of the problems uncovered by this study can be ameliorated by attention to questionnaire design. For example, by the provision of at least five response options, by being explicit about including co-morbidity, and by measuring medication change as a separate outcome. The study also highlighted more fundamental conceptual difficulties, such as response shift and the respondent's conflict between scoring external function and internal distress (what they did, vs. what they felt). These issues relate to the co-existence of different perspectives and the impossibility of reducing health status to one 'single truth'. The study concludes that qualitative evaluations have an important role to play in questionnaire design and development and are likely to lead to more modest and realistic appraisals of outcome questionnaire performance.
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In the citing paper
“PROM development procedures are not standardized regarding patient involvement and the few studies who looked at patient involvement in the development of PROMs reported variations in whether and to what extent patients are involved in the development.7, 17”
From Patient involvement in the development of patient‐reported outcome measures: a scoping review (2017) · cites this paper as [7]
In the citing paper
“To capture the patient's perspective, it is essential that patients are involved in PROM development”
From Patient involvement in the development of patient‐reported outcome measures: a scoping review (2017) · cites this paper as [7]
In the citing paper
“Other research looking at patient involvement in the development of PROMs for certain health problems suggests similar or even less favourable results for patient involvement.7, 17”
From Patient involvement in the development of patient‐reported outcome measures: a scoping review (2017) · cites this paper as [7]
In the citing paper
“This is especially surprising because patient involvement is not only recommended by many researchers,5, 6, 7, 8, 9 a few years ago it has also become a requirement if the PROM is used in medical product development.26”
From Patient involvement in the development of patient‐reported outcome measures: a scoping review (2017) · cites this paper as [7]
In the citing paper
“Only a few studies investigated patient involvement in the development of PROMs, and only for a small number of PROMs, or for a specific disease.7, 17”
From Patient involvement in the development of patient‐reported outcome measures: a scoping review (2017) · cites this paper as [7]
In the citing paper
“PROM development procedures are not standardized regarding patient involvement and the few studies who looked at patient involvement in the development of PROMs reported variations in whether and to what extent patients are involved in the development.7, 17”
From Patient involvement in the development of patient‐reported outcome measures: a scoping review (2017) · cites this paper as [7]
In the citing paper
“Other research using interviews with patients uncovered conceptual difficulties and questionnaire design problems among a few well‐known PROMs which might have been prevented by involving patients in the development.7”
From Patient involvement in the development of patient‐reported outcome measures: a scoping review (2017) · cites this paper as [7]
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Research works printed but not linked: 1
- Paterson C. The context, experience and outcome of acupuncture treatment: Users' perspectives and outcome questionnaire performance (dissertation). University of London, 2002.
Cited by
Sorted by citations
Measures of self-perceived well-being
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Patient involvement in the development of patient‐reported outcome measures: a scoping review
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Metadata
- Authors
- Paterson, C.
- Affiliations
- University of Bristol (GB)
- Corresponding author
- Paterson, Charlotte
- ORCID
- Paterson, Charlotte
- Venue
- Quality of Life Research
- Published
- 2004-06
- Volume
- 13
- Issue
- 5
- Pages
- 871-881
- ISSN
- 0962-9343 (ISSN-L)
- 1573-2649
- OpenAlex
- W1992498035
- Cited by
- 107
- References
- 33
- Citations by year
- 2026: 5 · 2025: 1 · 2024: 4 · 2023: 3 · 2022: 4 · 2021: 5 · 2020: 1 · 2019: 4 · 2018: 8 · 2017: 7 · 2016: 6 · 2015: 4 · 2014: 6 · 2013: 5 · 2012: 2
- FWCI
- 15.90
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- Locations
- Quality of Life Research (publishedVersion)
- PubMed (publishedVersion)
- Explore Bristol Research (publishedVersion)
- Bristol Research (University of Bristol) (submittedVersion)
- Topics
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Health Sciences › Nursing › Research and Theory › Health Education and Validation
- Social Sciences › Sociology and Political Science › Survey Methodology and Nonresponse
- Keywords
- questionnaire design, EuroQol, COOP/WONCA charts, chronic disease, acupuncture, response shift, patient experience, health status measurement, comorbidities, medication changes, cognitive interviewing
- MeSH terms
- Chronic Disease, United Kingdom, Health Status Indicators, Humans, Outcome and Process Assessment, Health Care, Surveys and Questionnaires, State Medicine, Patient Satisfaction, Outcome Assessment, Health Care, Acupuncture
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