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. 2020 Nov 18;12(1):154.
doi: 10.1186/s13195-020-00723-1.

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

Filipa Landeiro  1 , Seher Mughal  2 , Katie Walsh  2 , Elsbeth Nye  2 , Jasmine Morton  2 , Harriet Williams  2 , Isaac Ghinai  2 , Yovanna Castro  3 , José Leal  2 , Nia Roberts  4 , Helena Wace  2 , Ron Handels  5   6 , Pascal Lecomte  7 , Anders Gustavsson  6   8 , Emilse Roncancio-Diaz  9 , Mark Belger  10 , Gurleen S Jhuti  3 , Jacoline C Bouvy  11 , Michele H Potashman  12 , Antje Tockhorn-Heidenreich  13 , Alastair M Gray  2 ; ROADMAP consortium
Affiliations

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

Filipa Landeiro et al. Alzheimers Res Ther. .

Abstract

Background: 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.

Aims: 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.

Methods: 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. 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.

Results: 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. 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.

Conclusions: 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.

Keywords: Alzheimer’s disease; Dementia; Quality of life; Systematic literature review.

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Conflict of interest statement

YC is an employee of F. Hoffmann-La Roche Ltd. RH has received grants from ROADMAP (IMI2; public–private collaboration; 2016–2019); consulting fees from Piramal, Roche and Eisai; and grants from Horizon 2020, JPND Joint Programming Neurodegenerative Disease Research, IMI Innovative Medicines Initiative, and national, European and patient charity funding organisations and private–public collaborations (ZonMw Netherlands, Alzheimer Netherlands, Dutch Flutemetamol Study, Alzheimer Research UK, Swedish National study on Aging and Care, European Brain Council). PL is employed by, owns stock in and has stock options in Novartis Pharma AG. AG is a partner of Quantify Research, providing consultancy services to pharmaceutical companies and other private and public organisations and institutions. AG’s contribution to ROADMAP was on behalf of Roche Pharmaceuticals. ERD is an employee of GE Healthcare. MB is an employee of and owns stock in Eli Lilly and Company Limited. GSJ is an employee of F. Hoffmann-La Roche Ltd. MHP is an employee of Biogen and owns stock in Biogen. She owns stock in a variety of companies that at times include other pharmaceutical and healthcare-related companies. ATH is an employee of and owns stock in Eli Lilly and Company Limited. FL, SM, KW, EN, JM, HW, IG, JL, NR, HW, JCB and AMG declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
PRISMA diagram for the SLR considering HR-QoL in people with predementia AD, MCI or dementia. ADLs, activities of daily living; CCRCT, Cochrane Central Register of Controlled Trials; CDSR, Cochrane Database of Systematic Reviews; DARE, Database of Abstracts of Reviews of Effects; NHS EED, National Health Service Economic Evaluation Database; QoL, quality of life; SLR, systematic literature review
Fig. 2
Fig. 2
HR-QoL measured using the EQ-5D. Self- and proxy ratings in people with MCI or dementia by disease severity. Results reported: mean HR-QoL and 95% confidence intervals (size of the box represents the sample size). EQ-5D, EuroQoL 5-Dimensions instrument; HR-QoL, health-related quality of life; MCI, mild cognitive impairment
See this image and copyright information in PMC

References

    1. National Institute for Health and Care Excellence . Dementia: assessment, management and support for people living with dementia and their carers. London: NICE; 2018. - PubMed
    1. Kalaria RN, Maestre GE, Arizaga R, Friedland RP, Galasko D, Hall K, et al. Alzheimer's disease and vascular dementia in developing countries: prevalence, management, and risk factors. Lancet Neurol. 2008;7:812–826. doi: 10.1016/S1474-4422(08)70169-8. - DOI - PMC - PubMed
    1. Rizzi L, Rosset I, Roriz-Cruz M. Global epidemiology of dementia: Alzheimer’s and vascular types. Biomed Res Int. 2014;2014:908915. doi: 10.1155/2014/908915. - DOI - PMC - PubMed
    1. Lobo A, Launer LJ, Fratiglioni L, Andersen K, Di Carlo A, Breteler MM, et al. Prevalence of dementia and major subtypes in Europe: a collaborative study of population-based cohorts. Neurologic Diseases in the Elderly Research Group. Neurology. 2000;54:S4–S9. doi: 10.1212/WNL.54.1.4. - DOI - PubMed
    1. Custodio N, Montesinos R, Lira D, Herrera-Perez E, Bardales Y, Valeriano-Lorenzo L. Mixed dementia: a review of the evidence. Dement Neuropsychol. 2017;11(4):364–370. doi: 10.1590/1980-57642016dn11-040005. - DOI - PMC - PubMed

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