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

Landeiro, Filipa; Mughal, Seher; Walsh, Katie; Nye, Elsbeth; Morton, Jasmine; Williams, Harriet; Ghinai, Isaac; Castro, Yovanna; Leal, José; Roberts, Nia; Wace, Helena; Handels, Ron; Lecomte, Pascal; Gustavsson, Anders; Roncancio-Diaz, Emilse; Belger, Mark; Jhuti, Gurleen S.; Bouvy, Jacoline C.; Potashman, Michele H.; Tockhorn-Heidenreich, Antje; Gray, Alastair M.

doi:10.1186/s13195-020-00723-1

Alzheimer's Research & Therapy

Table 1 Health state values for individuals with MCI or dementia by health-related quality-of-life instrument, respondent and country

Study	Time point	Country	Study design	Setting	Self-rated mean (SD)							Proxy-rated mean (SD)
Study	Time point	Country	Study design	Setting	n	MCI	Mild	Mod.	Mild–mod.	Sev.	NS	n	MCI	Mild	Mod.	Mild–mod.	Sev.	NS
EQ-5D
Davis 2017	BL – I	CA	RCT	Comm	35		0.82 (0.07)					32		0.83 (0.06)
Davis 2017	BL – C	CA	RCT	Comm	35		0.80 (0.11)					31		0.80 (0.14)
Fang 2016	CA pw	CA	CS	NS	216		0.84*^†	0.82^† (0.38)
Fang 2016	UK pw	CA	CS	NS	216		0.85^† (0.11)	0.81^† (0.56)
Jönsson 2006	Mean of BL, 6 mo, 12 mo	SE, DK, FI, NO	CO	Mixed	272	0.84	0.85	0.73	0.83	0.78		272	0.7	0.65	0.51	0.52	0.4
Naglie 2011b	BL	CA	CS	Comm	370	0.89 (0.12)	0.87 (0.13)	0.92 (0.11)		0.87 (0.16)
Naglie 2011a	BL	CA	CS	Comm								412	0.82 (0.16)	0.80 (0.16)	0.76 (0.17)		0.68 (0.22)
Naglie 2006	BL	CA	CS	Mixed	60				0.86*			60				0.62*
Oremus 2014	US value set	CA	CS	Mixed	216		0.89 (0.10)	0.82 (0.41)
Oremus 2014	CA set	CA	CS	Mixed	216		0.82 (0.07)	0.77 (0.34)
Oremus 2016	BL	CA	CS	Gen pub								48P		0.65 (0.18)	0.51 (0.4)		0.25 (0.22)
Tarride 2011	BL	CA	Obs	Gen pub								430			0.64 (0.19)
Xie 2012	BL	CA	Obs	Gen pub								100P		0.74 (0.12)	0.62 (0.16)		0.45 (0.19)
Hessmann 2016	BL	DE	CS	Mixed	395	0.72 (0.28)	0.68 (0.30)	0.71 (0.32)		0.50 (0.40)		395	0.75 (0.30)	0.61 (0.33)	0.41 (0.34)		0.21 (0.27)
Kunz 2010	BL	DE	CO	Comm	333		0.69*	0.58*				333		0.60*	0.46*
Makai 2014	BL	DE	CS	Institute								95F						0.52 (0.34)
Menn 2012	BL – I1	DE	CRCT	Comm								109				0.59 (0.31)
Menn 2012	BL – I2	DE	CRCT	Comm								110				0.51 (0.32)
Menn 2012	BL – C	DE	CRCT	Comm								171				0.53 (0.29)
Wimo 2013	All countries BL	DE, GB, FR	CS	Comm								1497		0.71 (0.79)	0.64 (0.49)		0.51 (0.59)
Bhattacharya 2010	BL	DK	CS	Comm	321		0.86 (0.16)					321		0.73 (0.15)
Hoffman 2016	BL – I	DK	RCT	Comm	107		0.93 (0.10)					107		0.88 (0.12)
Hoffman 2016	BL – C	DK	RCT	Comm	93		0.93 (0.09)					93		0.86 (0.11)
Diaz-Redondo 2014	BL	ES	CS	Institute								525		0.50 (0.40)	0.30 (0.40)		0.00 (0.30)
Garre-Olmo 2017	BL	ES	CS	NS								343		0.70 (0.10)	0.50 (0.20)		0.30 (0.20)
Léon-Salas 2015	BL	ES	CS	Institute								475						0.09 (0.37)
Lopez-Bastida 2006	BL	ES	CS	Comm								237		0.52*	0.30*		0.12*
Olazarán 2012	Nursing home pts	ES	CO	Institute								153					0.06 (0.33)
Olazarán 2012	Daycare pts	ES	CO	Comm								27					0.20 (0.33)
Sarabia-Cobo 2017	BL	ES	CS	Institute								217F		0.71 (0.14)	0.62 (0.31)		0.31 (0.17)
Coucill 2001	BL	GB	CS	Comm	64						0.80*
Bryan 2005	Informal CG	GB	CS	Comm								64		0.57 (0.29)	0.61 (0.29)
Bryan 2005	Professional CG	GB	CS	Comm								64F		0.72 (0.22)	0.69 (0.24)
Knapp 2016	BL – I1	GB	RCT	Comm								73					0.57 (0.28)
Knapp 2016	BL – I2	GB	RCT	Comm								73					0.55 (0.28)
Knapp 2016	BL – I3	GB	RCT	Comm								76					0.59 (0.27)
Knapp 2016	BL – I4	GB	RCT	Comm								73					0.55 (0.29)
Mulhern 2013	BL	GB	CS	Comm	71						0.85 (0.14)	71						0.78 (0.19)
Orgeta 2015	BL	GB	OB	Comm	478		0.79 (0.22)	0.72 (0.23)				478		0.63 (0.27)	0.52 (0.27)
Selwood 2005	FU (Thorgrimsen 2003)	GB	CO	Mixed	40						0.88*
Sheehan 2012	BL	GB	CS	Mixed	109						0.71 (0.35)	106						0.30 (0.42)
Woods 2012	BL – I	GB	pRCT	Comm	268				0.75 (0.25)			268				0.57 (0.29)
Woods 2012	BL – C	GB	pRCT	Comm	219				0.76 (0.26)			219				0.60 (0.27)
Thorgrimsen 2003	BL	GB	CS	Mixed	60						0.80 (0.30)
Trigg 2015	BL	GB	CO	Mixed	70						0.81 (0.22)	145						0.70 (0.29)
Érsek 2010	BL	HU	CS	Comm								74^‡	0.53 (0.33)	0.56 (0.28)	0.29 (0.32)		0.19 (0.31)
Sakakibara 2015	BL – G1	JP	NRCT	NS								43						0.58 (0.19)
Sakakibara 2015	BL – G2	JP	NRCT	NS								45						0.55 (0.21)
Sakakibara 2015	BL – G3	JP	NRCT	NS								51						0.51 (0.24)
Sakakibara 2015	BL – G4	JP	NRCT	NS								51						0.48 (0.24)
Schiffczyk 2010	BL	DE	CO	Comm	137						0.15	137						0.002*
Yamanaka 2013	BL – I	JP	RCT	Institute	26				0.74 (0.05)			26F				0.62 (0.04)
Yamanaka 2013	BL – C	JP	RCT	Institute	30				0.81 (0.04)			30F				0.59 (0.04)
Koekkoek 2015	BL	NL	CS	Comm	57	0.73 (0.30)
MacNeil Vroomen 2015	BL – I1	NL	NRCT	Comm	234						0.82 (0.20)	234						0.74 (0.20)
MacNeil Vroomen 2015	BL – I2	NL	NRCT	Comm	214						0.79 (0.20)	214						0.71 (0.30)
MacNeil Vroomen 2015	BL – C	NL	NRCT	Comm	73						0.83 (0.20)	73						0.74 (0.20)
Meeuwsen 2013	BL – I	NL	RCT	Comm	87				0.85 (0.18)
Meeuwsen 2013	BL – C	NL	RCT	Comm	88				0.85 (0.17)
van de Ven 2013	BL – I	NL	CRCT	Institute	73						0.39 (0.03)
van de Ven 2013	BL – C	NL	CRCT	Institute	119						0.44 (0.02)
Wolfs 2008	BL – I	NL	CRCT	Comm								137						0.54 (0.33)
Wolfs 2008	BL – C	NL	CRCT	Comm								93						0.54 (0.30)
Winter 2011	With depr	RU	CS	NS	85^‡						0.35 (0.18)
Winter 2011	Without depr	RU	CS	NS	13^‡						0.48 (0.18)
Mesterton 2010	BL	SE	CS	Mixed								233^§		0.64*	0.39*		0.24*
Boström 2007	People with DLB	SE, FI, NO	CS	Mixed	34						0.38 (0.38)	34						0.24 (0.30)
Boström 2007	People with AD	SE, FI, NO	CS	Mixed	34						0.87 (0.17)	34						0.56 (0.29)
Kuo 2010	BL – C	TW	CS	Comm								89						0.55*
Kuo 2010	BL – I	TW	CS	Institute								51						0.32*
Karlawish 2008b	BL	US	CS	Comm	93	0.78 (0.26)	0.8 (0.23)	0.89 (0.13)
Karlawish 2008a	BL	US	CS	Comm								100	0.72 (0.20)	0.63 (0.25)	0.60 (0.23)
HUI-2
Lam 2010	AD pts	CA	RB	Institute								4094						0.23*
Lam 2010	Other dementia pts	CA	RB	Institute								12,452						0.24*
Goldfeld 2012	Non-dying in last 90 d	US	CO	Institute								142F					0.18 (0.06)
Goldfeld 2012	Dying in last 90 d	US	CO	Institute								177F					0.16 (0.06)
Kavirajan 2009	BL	US	CO	Mixed								408						0.54 (0.23)
Leon 2000	CAMCs	US	CS	Comm								204		0.69 (0.16)	0.53 (0.18)		0.36 (0.16)
Leon 2000	CMCOs	US	CS	Comm								150		0.67 (0.15)	0.56 (0.16)		0.38 (0.17)
Leon 2000	RALFs	US	CS	Institute								161F		0.74 (0.13)	0.56 (0.16)		0.35 (0.15)
Leon 2000	NHs	US	CS	Institute								164F		0.71 (0.16)	0.48 (0.18)		0.31 (0.12)
Karlawish 2008b	BL	US	CS	Comm	93	0.89 (0.13)	0.85 (0.19)	0.92 (0.11)
Karlawish 2008a	BL	US	CS	Comm								100	0.76 (0.16)	0.70 (0.20)	0.71 (0.17)
HUI-3
Naglie 2011a	BL	CA	CS	Comm								412	0.48 (0.27)	0.36 (0.27)	0.31 (0.26)		0.16 (0.24)
Naglie 2006	BL	CA	CS	Mixed	60				0.73*			60				0.23*
Ikeda 2001	Inpts	JP	CS	Mixed								17F					0.04 (0.20)
Ikeda 2001	Outpts	JP	CS	Mixed								78		0.33 (0.23)	0.16 (0.29)		0.02 (0.25)
Lacey 2015	Pooled dataset	US, CA, DE, AT	RCT	Comm								2204	0.54 (0.25)	0.51 (0.25)	0.41 (0.23)
Neumann 2000	By disease stage	US	CS	Mixed								679	0.47 (0.24)	0.39 (0.24)	0.19 (0.20)		0.06 (0.17)
Miller 2008	BL	US	CO	Comm								421						0.18 (0.25)
Kavirajan 2009	BL	US	CO	Mixed								408						0.17 (0.31)
McLaughlin 2010	By disease stage	US + Europe	CS	NS								166		0.49 (0.26)	0.29 (0.25)
QWB
Naglie 2011b	BL	CA	CS	Comm	370	0.63 (0.15)	0.61 (0.15)	0.65 (0.16)		0.65 (0.18)
Naglie 2011a	BL	CA	CS	Comm								412	0.56 (0.17)	0.50 (0.15)	0.46 (0.17)		0.39 (0.17)
Naglie 2006	BL	CA	CS	Mixed	60				0.60*			60				0.42*
Kerner 1998	BL	US	CO	Comm								159						0.51 (0.06)
15D ^¶
Suominen 2015	BL – I	FI	RCT	Comm	40						0.76^‡ (0.11)
Suominen 2015	BL – C	FI	RCT	Comm	38						0.77^‡ (0.14)
CDR
Sano 1999	Expert raters	US	CS	NS								41		0.67 (0.32)			0.31 (0.27)
Sano 1999	Student raters	US	CS	NS								13		0.58 (0.23)			0.29 (0.21)
DEMQOL
D’Amico 2016	BL – I	GB	RCT	Mixed								30						0.67 (0.14)
D’Amico 2016	BL – C	GB	RCT	Mixed								22						0.71 (0.15)

Refer to Additional file 1 for the full details of each study cited
AD Alzheimer’s disease, AT Austria, BL baseline, C control, CA Canada, CAMC community academic/medical centres, CDR Clinical Dementia Rating, CG caregiver, CMCO community managed care organisations, CO cohort, Comm community setting, CRCT cluster randomised controlled trial, CS cross-sectional, d days, DE Germany, depr depression, DK Denmark, DLB dementia with Lewy bodies, EQ-5D EuroQol-5 Dimensions, ES Spain, F formal caregiver, FI Finland, FR France, FU follow-up, G group, GB Great Britain, Gen pub general public, HR-QoL health-related quality of life, HU Hungary, HUI Health Utilities Index, I intervention, I1 intervention 1, I2 intervention 2, I3 intervention 3, I4 intervention 4, inpts inpatients, JP Japan, MCI mild cognitive impairment, mo month(s), mod. moderate, NH nursing home, NL Netherlands, NO Norway, NRCT non-randomised controlled trial, NS not specified, Obs observational study, outpts outpatients, P member of the general public, pRCT pragmatic randomised controlled trial, pts. patients, pw preference weights, QWB Quality of Well-Being scale, RALF residential assisted-living facility, RB register-based study, RCT randomised controlled trial, RU Russia, SD standard deviation, SE Sweden, Sev. severe, TW Taiwan, UK United Kingdom, US United States of America
*SD not provided
^†Median
^‡Does not specify whether the quality of life was self-rated or proxy-rated
^§Does not specify whether the proxy was an informal or formal caregiver
^¶The 15D may also be completed during an interview with the subject or their proxy

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