Can the general public use vignettes to discriminate between Alzheimer’s disease health states?

Oremus, Mark; Xie, Feng; Pullenayegum, Eleanor; Gaebel, Katherine

doi:10.1186/s12877-016-0207-4

Cited by 7 publications

(8 citation statements)

References 25 publications

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“…In this research, we did not focus on analyzing pretest participants’ specific health utilities because the objective of the work was to develop and test an online TTO app. We have already shown in previous research that members of the general public can differentiate between AD health states [16].…”

Section: Discussionmentioning

confidence: 99%

“…Our interest in TTO emerges from research examining whether the general public can act as a proxy and estimate HRQoL in place of persons with Alzheimer’s disease (AD) [16]. We plan to ask members of the general public to read descriptions of the mild, moderate, and severe health states of AD.…”

Section: Introductionmentioning

confidence: 99%

“…The health utility scores from the general public will be compared to a set of similarly elicited scores from persons with AD. We have already established that the general public can use health state descriptions to discriminate between mild, moderate, and severe AD [16].…”

Section: Introductionmentioning

confidence: 99%

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A Computer-Assisted Personal Interview App in Research Electronic Data Capture for Administering Time Trade-off Surveys (REDCap): Development and Pretest

Oremus¹,

Sharafoddini²,

Morgano³

et al. 2018

JMIR Formativ Res

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Background The time trade-off (TTO) task is a method of eliciting health utility scores, which range from 0 (equivalent to death) to 1 (equivalent to perfect health). These scores numerically represent a person’s health-related quality of life. Software apps exist to administer the TTO task; however, most of these apps are poorly documented and unavailable to researchers. Objective To fill the void, we developed an online app to administer the TTO task for a research study that is examining general public proxy health-related quality of life estimates for persons with Alzheimer’s disease. This manuscript describes the development and pretest of the app. Methods We used Research Electronic Data Capture (REDCap) to build the TTO app. The app’s modular structure and REDCap’s object-oriented environment facilitated development. After the TTO app was built, we recruited a purposive sample of 11 members of the general public to pretest its functionality and ease of use. Results Feedback from the pretest group was positive. Minor modifications included clarity enhancements, such as rearranging some paragraph text into bullet points, labeling the app to delineate different question sections, and revising or deleting text. We also added a research question to enable the identification of respondents who know someone with Alzheimer’s disease. Conclusions We developed an online app to administer the TTO task. Other researchers may access and customize the app for their own research purposes.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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A Computer-Assisted Personal Interview App in Research Electronic Data Capture for Administering Time Trade-off Surveys (REDCap): Development and Pretest

Oremus¹,

Sharafoddini²,

Morgano³

et al. 2018

JMIR Formativ Res

Self Cite

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“…As such, it is likely that all participants would have been informed of the risk of bleeds while on DAPT by their treating physician, thus, making them suitable surrogates. Furthermore, the are a number existing studies that have successfully employed the vignette approach to eliciting utility values/decrements using participant samples with no first-hand experience or knowledge of the health states they were being asked to value [ 41 – 43 ]. These existing studies have justified the vignette approach as existing evidence was of poor quality and relevance (which we also showed in our review) and that direct measurement in affected patients would be difficult (which is also the case for major and minor bleeds as patients are incapacitated and don’t interact with the healthcare system at the time of the event respectively).…”

Section: Discussionmentioning

confidence: 99%

Health-related quality of life impact of minor and major bleeding events during dual antiplatelet therapy: a systematic literature review and patient preference elicitation study

Doble

Pufulete

Harris

et al. 2018

Health Qual Life Outcomes

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BackgroundDual antiplatelet therapy (DAPT) is the recommended preventative treatment for secondary ischaemic events, but increases the risk of bleeding, potentially affecting patients’ health-related quality-of-life (HRQoL). Varied utility decrements have been used in cost-effectiveness models assessing alternative DAPT regimens, but it is unclear which of these decrements are most appropriate. Therefore, we reviewed existing sources of utility decrements for bleeds in patients receiving DAPT and undertook primary research to estimate utility decrements through a patient elicitation exercise using vignettes and the EuroQol EQ-5D.MethodsMEDLINE, PubMed and references of included studies were searched. Primary research and decision analytic modelling studies reporting utility decrements for bleeds related to DAPT were considered. For the primary research study, 21 participants completed an elicitation exercise involving vignettes describing minor and major bleeds and the EQ-5D-3 L and EQ-5D-5 L. Utility decrements were derived using linear regression and compared to existing estimates.ResultsFour hundred forty-two citations were screened, of which 12 studies were included for review. Reported utility decrements ranged from − 0.002 to − 0.03 for minor bleeds and − 0.007 to − 0.05 for major bleeds. Data sources used to estimate the decrements, however, lacked relevance to our population group and few studies adequately reported details of their measurement and valuation approaches. No study completely adhered to reimbursement agency requirements in the UK according to the National Institute for Health and Care Excellence reference case. Our primary research elicited utility decrements overlapped existing estimates, ranging from − 0.000848 to − 0.00828 for minor bleeds and − 0.0187 to − 0.0621 for major bleeds. However, the magnitude of difference depended on the instrument, estimation method and valuation approach applied.ConclusionsSeveral sources of utility decrements for bleeds are available for use in cost-effectiveness analyses, but are of limited quality and relevance. Our elicitation exercise has derived utility decrements from a relevant patient population, based on standardised definitions of minor and major bleeding events, using a validated HRQoL instrument and have been valued using general population tariffs. We suggest that our utility decrements be used in future cost-effectiveness analyses of DAPT.Electronic supplementary materialThe online version of this article (10.1186/s12955-018-1019-3) contains supplementary material, which is available to authorized users.

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“…The revisions were substantive enough to produce what was essentially a new set of vignettes. The ‘new’ vignettes are available for viewing in an open access format [ 33 ].…”

Section: Methodsmentioning

confidence: 99%

Development of Clinical Vignettes to Describe Alzheimer's Disease Health States: A Qualitative Study

2016

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AimsTo develop clinical descriptions (vignettes) of life with Alzheimer’s disease (AD), we conducted focus groups of persons with AD (n = 14), family caregivers of persons with AD (n = 20), and clinicians who see persons with AD in their practices (n = 5).MethodsGroup participants read existing descriptions of AD and commented on the realism and comprehensibility of the descriptions. We used thematic framework analysis to code the comments into themes and develop three new vignettes to describe mild, moderate, and severe AD.ResultsThemes included the types of symptoms to mention in the new vignettes, plus the manner in which the vignettes should be written. Since the vignette descriptions were based on focus group participants’ first-hand knowledge of AD, the descriptions can be said to demonstrate content validity.ConclusionMembers of the general public can read the vignettes and estimate their health-related quality-of-life (HRQoL) as if they had AD based on the vignette descriptions. This is especially important for economic evaluations of new AD medications, which require HRQoL to be assessed in a manner that persons with AD often find difficult to undertake. The vignettes will allow the general public to serve as a proxy and provide HRQoL estimates in place of persons with AD.

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Can the general public use vignettes to discriminate between Alzheimer’s disease health states?

Cited by 7 publications

References 25 publications

A Computer-Assisted Personal Interview App in Research Electronic Data Capture for Administering Time Trade-off Surveys (REDCap): Development and Pretest

A Computer-Assisted Personal Interview App in Research Electronic Data Capture for Administering Time Trade-off Surveys (REDCap): Development and Pretest

Health-related quality of life impact of minor and major bleeding events during dual antiplatelet therapy: a systematic literature review and patient preference elicitation study

Development of Clinical Vignettes to Describe Alzheimer's Disease Health States: A Qualitative Study

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