TY - JOUR
T1 - Health-related quality of life in people with predementia Alzheimer's disease, mild cognitive impairment or dementia measured with preference-based instruments
T2 - a systematic literature review
AU - Landeiro, Filipa
AU - Mughal, Seher
AU - Walsh, Katie
AU - Nye, Elsbeth
AU - Morton, Jasmine
AU - Williams, Harriet
AU - Ghinai, Isaac
AU - Castro, Yovanna
AU - Leal, Jose
AU - Roberts, Nia
AU - Wace, Helena
AU - Handels, Ron
AU - Lecomte, Pascal
AU - Gustavsson, Anders
AU - Roncancio-Diaz, Emilse
AU - Belger, Mark
AU - Jhuti, Gurleen S.
AU - Bouvy, Jacoline C.
AU - Potashman, Michele H.
AU - Tockhorn-Heidenreich, Antje
AU - Gray, Alastair M.
AU - ROADMAP consortium
N1 - Funding Information:
This project received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement no. 116020 (“ROADMAP”). This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and the European Federation of Pharmaceutical Industries and Associations (EFPIA). It is also supported by the Medical Research Council Dementias Platform UK (MR/L023784/1 and MR/009076/1). The funding body had no role in the design of the study, data collectoin, analysis, interpretation of results and in writing the manuscript. AMG is partly funded by the NIHR Biomedical Research Centre (BRC) Oxford.
Funding Information:
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.
Funding Information:
The authors would like to acknowledge Dr Sarah Birch and Karen Goa (Rx Communications, Mold, UK) for medical writing assistance with the preparation of this manuscript, funded by Eli Lilly and Company.
Publisher Copyright:
© 2020, The Author(s).
PY - 2020/12/18
Y1 - 2020/12/18
N2 - 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.
AB - 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.
KW - Dementia
KW - Alzheimer’
KW - s disease
KW - Quality of life
KW - Systematic literature review
KW - DEMQOL-PROXY-U
KW - OLDER-PEOPLE
KW - EQ-5D-5L
KW - UTILITY
U2 - 10.1186/s13195-020-00723-1
DO - 10.1186/s13195-020-00723-1
M3 - (Systematic) Review article
C2 - 33208190
SN - 1758-9193
VL - 12
JO - Alzheimer's Research & Therapy
JF - Alzheimer's Research & Therapy
IS - 1
M1 - 154
ER -