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

From: 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

Study Time point Country Study design Setting Self-rated mean (SD) Proxy-rated mean (SD)
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)
  1. Refer to Additional file 1 for the full details of each study cited
  2. 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
  3. *SD not provided
  4. Median
  5. Does not specify whether the quality of life was self-rated or proxy-rated
  6. §Does not specify whether the proxy was an informal or formal caregiver
  7. The 15D may also be completed during an interview with the subject or their proxy