Home > Research > Publications & Outputs > What is important to people living with dementia?

Research

Associated organisational unit

Electronic data

  • phase 1 paper

    Final published version, 830 KB, PDF document

    Available under license: CC BY: Creative Commons Attribution 4.0 International License

Links

Text available via DOI:

Keywords

View graph of relations

What is important to people living with dementia?: the ‘long-list’ of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions

Research output: Contribution to Journal/Magazine › Journal article › peer-review

Published

Standard

What is important to people living with dementia? the ‘long-list’ of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions. / Harding, Andrew; Morbey, Hazel; Ahmed, Faraz et al.
In: BMC Geriatrics, Vol. 19, No. 94, 94, 27.03.2019, p. 1-12.

Research output: Contribution to Journal/Magazine › Journal article › peer-review

Harvard

Harding, A, Morbey, H, Ahmed, F, Opdebeeck, C, Lasrado, R, Williamson, P, Swarbrick, C, Leroi, I, Challis, D, Hellström , I, Burns, A, Keady, J & Reilly, ST 2019, 'What is important to people living with dementia? the ‘long-list’ of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions', BMC Geriatrics, vol. 19, no. 94, 94, pp. 1-12. https://doi.org/10.1186/s12877-019-1103-5

APA

Harding, A., Morbey, H., Ahmed, F., Opdebeeck, C., Lasrado, R., Williamson, P., Swarbrick, C., Leroi, I., Challis, D., Hellström , I., Burns, A., Keady, J., & Reilly, S. T. (2019). What is important to people living with dementia? the ‘long-list’ of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions. BMC Geriatrics, 19(94), 1-12. Article 94. https://doi.org/10.1186/s12877-019-1103-5

Vancouver

Harding A, Morbey H, Ahmed F, Opdebeeck C, Lasrado R, Williamson P et al. What is important to people living with dementia? the ‘long-list’ of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions. BMC Geriatrics. 2019 Mar 27;19(94):1-12. 94. doi: 10.1186/s12877-019-1103-5

Author

Harding, Andrew ; Morbey, Hazel ; Ahmed, Faraz et al. / What is important to people living with dementia? the ‘long-list’ of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions. In: BMC Geriatrics. 2019 ; Vol. 19, No. 94. pp. 1-12.

Bibtex

@article{38f1292e51564f9683608a140336f125,
title = "What is important to people living with dementia?: the {\textquoteleft}long-list{\textquoteright} of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions",
abstract = "BackgroundCore outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a {\textquoteleft}long-list{\textquoteright} of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a {\textquoteleft}long-list{\textquoteright} of outcome items for non-pharmacological interventions for people with dementia living at home.MethodsThree iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers (n = 55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample (n = 124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the {\textquoteleft}long-list{\textquoteright} in eight workshops.ResultsOne hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood & Home, Independence).ConclusionsThis paper presents a transparent blueprint for {\textquoteleft}long-list{\textquoteright} development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes.",
keywords = "Core outcome set, Delphi survey long-list, Dementia, Neighbourhood, Non-pharmacological, Literature review, Qualitative research",
author = "Andrew Harding and Hazel Morbey and Faraz Ahmed and Carol Opdebeeck and Reena Lasrado and Paula Williamson and Caroline Swarbrick and Iracema Leroi and David Challis and Ingrid Hellstr{\"o}m and Alistair Burns and John Keady and Reilly, {Siobhan Theresa}",
year = "2019",
month = mar,
day = "27",
doi = "10.1186/s12877-019-1103-5",
language = "English",
volume = "19",
pages = "1--12",
journal = "BMC Geriatrics",
issn = "1471-2318",
publisher = "BioMed Central",
number = "94",

}

RIS

TY - JOUR

T1 - What is important to people living with dementia?

T2 - the ‘long-list’ of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions

AU - Harding, Andrew

AU - Morbey, Hazel

AU - Ahmed, Faraz

AU - Opdebeeck, Carol

AU - Lasrado, Reena

AU - Williamson, Paula

AU - Swarbrick, Caroline

AU - Leroi, Iracema

AU - Challis, David

AU - Hellström , Ingrid

AU - Burns, Alistair

AU - Keady, John

AU - Reilly, Siobhan Theresa

PY - 2019/3/27

Y1 - 2019/3/27

N2 - BackgroundCore outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a ‘long-list’ of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a ‘long-list’ of outcome items for non-pharmacological interventions for people with dementia living at home.MethodsThree iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers (n = 55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample (n = 124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the ‘long-list’ in eight workshops.ResultsOne hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood & Home, Independence).ConclusionsThis paper presents a transparent blueprint for ‘long-list’ development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes.

AB - BackgroundCore outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a ‘long-list’ of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a ‘long-list’ of outcome items for non-pharmacological interventions for people with dementia living at home.MethodsThree iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers (n = 55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample (n = 124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the ‘long-list’ in eight workshops.ResultsOne hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood & Home, Independence).ConclusionsThis paper presents a transparent blueprint for ‘long-list’ development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes.

KW - Core outcome set

KW - Delphi survey long-list

KW - Dementia

KW - Neighbourhood

KW - Non-pharmacological

KW - Literature review

KW - Qualitative research

U2 - 10.1186/s12877-019-1103-5

DO - 10.1186/s12877-019-1103-5

M3 - Journal article

VL - 19

SP - 1

EP - 12

JO - BMC Geriatrics

JF - BMC Geriatrics

SN - 1471-2318

IS - 94

M1 - 94

ER -