Health-related quality of life in people with predementia Alzheimer's disease, mild cognitive impairment or dementia measured with preference-based instruments: a systematic literature review

Background<br> Obtaining reliable estimates of the health-related quality of life (HR-QoL) of people with predementia Alzheimer’s disease [AD] (preclinical or prodromal AD), mild cognitive impairment (MCI) and dementia is essential for economic evaluations of related health interventions. <...

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Main Authors: Landeiro, F, Mughal, S, Walsh, K, Nye, E, Morton, J, Williams, H, Ghinai, I, Castro, Y, Leal, J, Roberts, N, Wace, H, Handels, R, Lecomte, P, Gustavsson, A, Roncancio-Diaz, E, Belger, M, Jhuti, GS, Bouvy, JC, Potashman, MH, Tockhorn-Heidenreich, A, Gray, AM, ROADMAP consortium
Format: Journal article
Language:English
Published: BioMed Central 2020
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author Landeiro, F
Mughal, S
Walsh, K
Nye, E
Morton, J
Williams, H
Ghinai, I
Castro, Y
Leal, J
Roberts, N
Wace, H
Handels, R
Lecomte, P
Gustavsson, A
Roncancio-Diaz, E
Belger, M
Jhuti, GS
Bouvy, JC
Potashman, MH
Tockhorn-Heidenreich, A
Gray, AM
ROADMAP consortium
author_facet Landeiro, F
Mughal, S
Walsh, K
Nye, E
Morton, J
Williams, H
Ghinai, I
Castro, Y
Leal, J
Roberts, N
Wace, H
Handels, R
Lecomte, P
Gustavsson, A
Roncancio-Diaz, E
Belger, M
Jhuti, GS
Bouvy, JC
Potashman, MH
Tockhorn-Heidenreich, A
Gray, AM
ROADMAP consortium
author_sort Landeiro, F
collection OXFORD
description Background<br> Obtaining reliable estimates of the health-related quality of life (HR-QoL) of people with predementia Alzheimer’s disease [AD] (preclinical or prodromal AD), mild cognitive impairment (MCI) and dementia is essential for economic evaluations of related health interventions. <br> Aims<br> To provide an overview of which quality of life instruments are being used to assess HR-QoL in people with predementia AD, MCI or dementia; and, to summarise their reported HR-QoL levels at each stage of the disease and by type of respondent. <br> Methods<br> We systematically searched for and reviewed eligible studies published between January 1990 and the end of April 2017 which reported HR-QoL for people with predementia AD, MCI or dementia. We only included instruments which are preference-based, allowing index scores/utility values to be attached to each health state they describe based on preferences obtained from population surveys. Summary results were presented by respondent type (self or proxy), type of instrument, geographical location and, where possible, stage of disease. <br> Health state utility values derived using the EuroQoL 5-Dimensions (EQ-5D) were meta-analysed by pooling reported results across all studies by disease severity (MCI, mild, mild to moderate, moderate, severe dementia, not specified) and by respondent (person with dementia, carer, general public, not specified), using a fixed-effects approach. <br> Results<br> We identified 61 studies which reported HR-QoL for people with MCI or dementia using preference-based instruments, of which 48 used the EQ-5D. Thirty-six studies reported HR-QoL for mild and/or moderate disease severities, and 12 studies reported utility values for MCI. <br> We found systematic differences between self-rated and proxy-rated HR-QoL, with proxy-rated utility valued being significantly lower in more severe disease states. <br> Conclusions<br> A substantial literature now exists quantifying the impact of dementia on HR-QoL using preference-based measures, giving researchers and modellers a firmer basis on which to select appropriate utility values when estimating the effectiveness and cost-effectiveness of interventions in this area. Further research is required on HR-QoL of people with preclinical and prodromal AD and MCI, possible differences by type of dementia, the effects of comorbidities, study setting and the informal caregiver’s own HR-QoL, including any effect of that on their proxy-ratings.
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spelling oxford-uuid:7d17fe0e-5958-43cc-a530-d384d17b53532022-03-26T21:01:14ZHealth-related quality of life in people with predementia Alzheimer's disease, mild cognitive impairment or dementia measured with preference-based instruments: a systematic literature reviewJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:7d17fe0e-5958-43cc-a530-d384d17b5353EnglishSymplectic ElementsBioMed Central2020Landeiro, FMughal, SWalsh, KNye, EMorton, JWilliams, HGhinai, ICastro, YLeal, JRoberts, NWace, HHandels, RLecomte, PGustavsson, ARoncancio-Diaz, EBelger, MJhuti, GSBouvy, JCPotashman, MHTockhorn-Heidenreich, AGray, AMROADMAP consortiumBackground<br> Obtaining reliable estimates of the health-related quality of life (HR-QoL) of people with predementia Alzheimer’s disease [AD] (preclinical or prodromal AD), mild cognitive impairment (MCI) and dementia is essential for economic evaluations of related health interventions. <br> Aims<br> To provide an overview of which quality of life instruments are being used to assess HR-QoL in people with predementia AD, MCI or dementia; and, to summarise their reported HR-QoL levels at each stage of the disease and by type of respondent. <br> Methods<br> We systematically searched for and reviewed eligible studies published between January 1990 and the end of April 2017 which reported HR-QoL for people with predementia AD, MCI or dementia. We only included instruments which are preference-based, allowing index scores/utility values to be attached to each health state they describe based on preferences obtained from population surveys. Summary results were presented by respondent type (self or proxy), type of instrument, geographical location and, where possible, stage of disease. <br> Health state utility values derived using the EuroQoL 5-Dimensions (EQ-5D) were meta-analysed by pooling reported results across all studies by disease severity (MCI, mild, mild to moderate, moderate, severe dementia, not specified) and by respondent (person with dementia, carer, general public, not specified), using a fixed-effects approach. <br> Results<br> We identified 61 studies which reported HR-QoL for people with MCI or dementia using preference-based instruments, of which 48 used the EQ-5D. Thirty-six studies reported HR-QoL for mild and/or moderate disease severities, and 12 studies reported utility values for MCI. <br> We found systematic differences between self-rated and proxy-rated HR-QoL, with proxy-rated utility valued being significantly lower in more severe disease states. <br> Conclusions<br> A substantial literature now exists quantifying the impact of dementia on HR-QoL using preference-based measures, giving researchers and modellers a firmer basis on which to select appropriate utility values when estimating the effectiveness and cost-effectiveness of interventions in this area. Further research is required on HR-QoL of people with preclinical and prodromal AD and MCI, possible differences by type of dementia, the effects of comorbidities, study setting and the informal caregiver’s own HR-QoL, including any effect of that on their proxy-ratings.
spellingShingle Landeiro, F
Mughal, S
Walsh, K
Nye, E
Morton, J
Williams, H
Ghinai, I
Castro, Y
Leal, J
Roberts, N
Wace, H
Handels, R
Lecomte, P
Gustavsson, A
Roncancio-Diaz, E
Belger, M
Jhuti, GS
Bouvy, JC
Potashman, MH
Tockhorn-Heidenreich, A
Gray, AM
ROADMAP consortium
Health-related quality of life in people with predementia Alzheimer's disease, mild cognitive impairment or dementia measured with preference-based instruments: a systematic literature review
title Health-related quality of life in people with predementia Alzheimer's disease, mild cognitive impairment or dementia measured with preference-based instruments: a systematic literature review
title_full Health-related quality of life in people with predementia Alzheimer's disease, mild cognitive impairment or dementia measured with preference-based instruments: a systematic literature review
title_fullStr Health-related quality of life in people with predementia Alzheimer's disease, mild cognitive impairment or dementia measured with preference-based instruments: a systematic literature review
title_full_unstemmed Health-related quality of life in people with predementia Alzheimer's disease, mild cognitive impairment or dementia measured with preference-based instruments: a systematic literature review
title_short Health-related quality of life in people with predementia Alzheimer's disease, mild cognitive impairment or dementia measured with preference-based instruments: a systematic literature review
title_sort health related quality of life in people with predementia alzheimer s disease mild cognitive impairment or dementia measured with preference based instruments a systematic literature review
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