Evidence map›Paper›PMID 30315554›Full record

ArticleThe patient2019

Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia.

Jan R Oyebode, Simon Pini, Emma Ingleson, Molly Megson, Mike Horton, Linda Clare, Hareth Al-Janabi, Carol Brayne, Penny Wright

Open access · greenAbstract read
PubMed Publisher
In one paragraph

Article in The patient, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed, 1 pooled it
2.0field-weighted citation impact, top 14% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

10 citing papers in PubMed, 1 synthesis or guideline pooled it, 19 citations in OpenAlex.

  1. Pooled it
  2. Review
  3. Article
  4. Article
  5. Article
  6. Article
  7. Article
  8. Article
  9. UK General Population Utility Values for the SIDECAR-D Instrument Measuring the Impact of Caring for People With Dementia.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research · 2020
    Article
  10. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors at 5 institutions in 1 country.

Jan R OyebodeCentre for Applied Dementia Studies, Faculty of Health Studies, University of Bradford, Bradford, UK. j.oyebode@bradford.ac.uk.ORCID http://orcid.org/0000-0002-0263-8740
Simon PiniSection of Patient Centred Outcome Research, Leeds Institute of Cancer and Pathology, University of Leeds, Leeds, UK.
Emma InglesonSection of Patient Centred Outcome Research, Leeds Institute of Cancer and Pathology, University of Leeds, Leeds, UK.
Molly MegsonSection of Patient Centred Outcome Research, Leeds Institute of Cancer and Pathology, University of Leeds, Leeds, UK.
Mike HortonPsychometric Laboratory for Health Sciences, Faculty of Medicine and Health, University of Leeds, Leeds, UK.
Linda ClareThe Centre for Research in Ageing and Cognitive Health, Medical School, University of Exeter, Exeter, UK.
Hareth Al-JanabiHealth Economics Unit, Institute of Applied Health Research, University of Birmingham, Birmingham, UK.ORCID http://orcid.org/0000-0002-3691-8310
Carol BrayneDepartment of Public Health and Primary Care, University of Cambridge, Cambridge, UK.ORCID http://orcid.org/0000-0001-5307-663X
Penny WrightSection of Patient Centred Outcome Research, Leeds Institute of Cancer and Pathology, University of Leeds, Leeds, UK.ORCID http://orcid.org/0000-0001-6129-4143
University of Leeds · GBUniversity of Birmingham · GBUniversity of Bradford · GBUniversity of Cambridge · GBUniversity of Exeter · GB

Funding

Medical Research Council MR/M025179/1National Institute for Health Research MR/M025179/1
6 · The paper itself

Abstract

BACKGROUND AND

objectivesThis paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool.

methodsSeven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers; a content and face validity check; assessment of psychometric potential; testing of response formats; pre-testing through cognitive interviews with 22 carers; administration rehearsal with two carers; and final review.

resultsAn initial set of 99 items was refined to a pool of 70 to be answered using a binary response format. Items were excluded due to overlap with others, ceiling effects, ambiguity, dependency on function of the person with dementia or two-part phrasing. Items retained covered a breadth of areas of impact of caring and were understandable and acceptable to respondents.

conclusionsThe resulting dementia carer-specific item pool reflects the accounts of a diverse sample of those who provide care for a person with dementia, allowing them to define the nature of the impact on their lives and resulting in a valid, acceptable set of items.

Indexed as

Needs AssessmentQuality of LifeAdultAgedAged, 80 and overCaregiversDementiaFamilyFemaleHumansInterviews as TopicMaleMiddle AgedPsychometricsQualitative ResearchUnited Kingdom

Identifiers

PMID30315554
OpenAlexW2892670947

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.