View in EDS PDF Full Text

How to measure fluctuating impairments in people with MS: development of an ambulatory assessment version of the EQ-5D-5L in an exploratory study.

Saved in:
Bibliographic Details
Title: How to measure fluctuating impairments in people with MS: development of an ambulatory assessment version of the EQ-5D-5L in an exploratory study.
Authors: Blome, Christine (AUTHOR), Carlton, Jill (AUTHOR), Heesen, Christoph (AUTHOR), Janssen, Mathieu F. (AUTHOR), Lloyd, Andrew (AUTHOR), Otten, Marina (AUTHOR), Brazier, John (AUTHOR)
Source: Quality of Life Research. Jul2021, Vol. 30 Issue 7, p2081-2096. 16p. 1 Diagram, 7 Charts, 3 Graphs.
Subjects: Patients' attitudes, Ecological momentary assessments (Clinical psychology), Mobile health, Cell phones, Test validity
Abstract: Background: Health fluctuations even within a single day are typical in multiple sclerosis (MS), but are not captured by widely used questionnaires like the EQ-5D-5L. This exploratory study aimed to develop an ambulatory assessment (AA) version of the EQ-5D-5L (EQ-5D-AA) where patients rate their health on mobile phones multiple times per day over several days, and to assess its feasibility and face validity. Methods: An initial EQ-5D-AA version was based on two patient focus groups. It was then tested and continuously developed in an iterative process: patients completed it over several days, followed by debriefing interviews. Findings were used to refine the EQ-5D-AA, with the resulting version being tested by the subsequent wave of patients until participants declared no need for changes anymore. Before and after the AA period, participants completed the standard paper-based EQ-5D-5L asking about 'today'. Results: Focus group participants reported that their impairments often fluctuated between and within days. They regarded an AA with three assessments per day over seven days most appropriate; assessment should be retrospective to the previous assessment, but not all items should be assessed at each time point. Four waves of AA testing were conducted. Thirteen out of the 17 participants preferred the AA over standard assessment as they regarded it more informative, but not too burdensome. Conclusion: The newly developed one-week AA of the EQ-5D-5L captures within-day and day-to-day health fluctuations in people with MS. From the patients' perspective, it is a feasible and face valid way to provide important information beyond what is captured by the standard EQ-5D-5L. [ABSTRACT FROM AUTHOR]
Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
FullText Links:
  – Type: pdflink
Text:
  Availability: 0
Header DbId: pbh
DbLabel: Psychology and Behavioral Sciences Collection
An: 151083839
AccessLevel: 6
PubType: Academic Journal
PubTypeId: academicJournal
PreciseRelevancyScore: 0
IllustrationInfo
Items – Name: Title
  Label: Title
  Group: Ti
  Data: How to measure fluctuating impairments in people with MS: development of an ambulatory assessment version of the EQ-5D-5L in an exploratory study.
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Blome%2C+Christine%22">Blome, Christine</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Carlton%2C+Jill%22">Carlton, Jill</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Heesen%2C+Christoph%22">Heesen, Christoph</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Janssen%2C+Mathieu+F%2E%22">Janssen, Mathieu F.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Lloyd%2C+Andrew%22">Lloyd, Andrew</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Otten%2C+Marina%22">Otten, Marina</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Brazier%2C+John%22">Brazier, John</searchLink> (AUTHOR)
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="JN" term="%22Quality+of+Life+Research%22">Quality of Life Research</searchLink>. Jul2021, Vol. 30 Issue 7, p2081-2096. 16p. 1 Diagram, 7 Charts, 3 Graphs.
– Name: Subject
  Label: Subjects
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Patients'+attitudes%22">Patients' attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Ecological+momentary+assessments+%28Clinical+psychology%29%22">Ecological momentary assessments (Clinical psychology)</searchLink><br /><searchLink fieldCode="DE" term="%22Mobile+health%22">Mobile health</searchLink><br /><searchLink fieldCode="DE" term="%22Cell+phones%22">Cell phones</searchLink><br /><searchLink fieldCode="DE" term="%22Test+validity%22">Test validity</searchLink>
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: Health fluctuations even within a single day are typical in multiple sclerosis (MS), but are not captured by widely used questionnaires like the EQ-5D-5L. This exploratory study aimed to develop an ambulatory assessment (AA) version of the EQ-5D-5L (EQ-5D-AA) where patients rate their health on mobile phones multiple times per day over several days, and to assess its feasibility and face validity. Methods: An initial EQ-5D-AA version was based on two patient focus groups. It was then tested and continuously developed in an iterative process: patients completed it over several days, followed by debriefing interviews. Findings were used to refine the EQ-5D-AA, with the resulting version being tested by the subsequent wave of patients until participants declared no need for changes anymore. Before and after the AA period, participants completed the standard paper-based EQ-5D-5L asking about 'today'. Results: Focus group participants reported that their impairments often fluctuated between and within days. They regarded an AA with three assessments per day over seven days most appropriate; assessment should be retrospective to the previous assessment, but not all items should be assessed at each time point. Four waves of AA testing were conducted. Thirteen out of the 17 participants preferred the AA over standard assessment as they regarded it more informative, but not too burdensome. Conclusion: The newly developed one-week AA of the EQ-5D-5L captures within-day and day-to-day health fluctuations in people with MS. From the patients' perspective, it is a feasible and face valid way to provide important information beyond what is captured by the standard EQ-5D-5L. [ABSTRACT FROM AUTHOR]
– Name: AbstractSuppliedCopyright
  Label:
  Group: Ab
  Data: <i>Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=151083839
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1007/s11136-021-02802-8
    Languages:
      – Code: eng
        Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 16
        StartPage: 2081
    Subjects:
      – SubjectFull: Patients' attitudes
        Type: general
      – SubjectFull: Ecological momentary assessments (Clinical psychology)
        Type: general
      – SubjectFull: Mobile health
        Type: general
      – SubjectFull: Cell phones
        Type: general
      – SubjectFull: Test validity
        Type: general
    Titles:
      – TitleFull: How to measure fluctuating impairments in people with MS: development of an ambulatory assessment version of the EQ-5D-5L in an exploratory study.
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Blome, Christine
      – PersonEntity:
          Name:
            NameFull: Carlton, Jill
      – PersonEntity:
          Name:
            NameFull: Heesen, Christoph
      – PersonEntity:
          Name:
            NameFull: Janssen, Mathieu F.
      – PersonEntity:
          Name:
            NameFull: Lloyd, Andrew
      – PersonEntity:
          Name:
            NameFull: Otten, Marina
      – PersonEntity:
          Name:
            NameFull: Brazier, John
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 07
              Text: Jul2021
              Type: published
              Y: 2021
          Identifiers:
            – Type: issn-print
              Value: 09629343
          Numbering:
            – Type: volume
              Value: 30
            – Type: issue
              Value: 7
          Titles:
            – TitleFull: Quality of Life Research
              Type: main
ResultId 1