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Table 1 Characteristics of studies included in the systematic review

From: Psychological, behavioral and social effects of disclosing Alzheimer’s disease biomarkers to research participants: a systematic review

Authors

Year

Country

Study name

Study design

Study population (n)

Disclosure

Assessment timepoints

Outcome measures

Studies on psychological effects

Romero et al. [30]

2005

USA

 

Cohort

76

APOE genotype

1 month, 4 months, 10 months

Emotional reactions

Gooding et al. [25]

2006

USA

REVEAL QRI

Qualitative

60

APOE genotype

>1 year

Coping

Green et al. [23]

2009

USA

REVEAL I

RCT

162

APOE genotype

Baseline, 6 weeks, 6 months, 1 year

Anxiety, depression, test-related distress

Ashida et al. [31]

2010

USA

REVEAL II

RCT

269

APOE genotype

Baseline, 6 weeks, 1 year

Relation results communication and anxiety, depression and test-related distress

Lineweaver et al. [32]

2014

USA

 

Case–control

144

APOE genotype

Mean 8.2 months post disclosure

Objective and subjective memory functioning

Green et al. [29]

2014

USA

REVEAL II

RCT

343

APOE genotype

Baseline, 6 weeks, 6 months, 1 year

Anxiety, depression, distress

Studies on behavioral effects

Zick et al. [24]

2005

USA

REVEAL I

RCT

162

APOE genotype

6 weeks, 6 months, 1 year

Insurance uptake

Chao et al. [22]

2008

USA

REVEAL I

RCT

162

APOE genotype

1 year

Health-related behavior: diet, physical exercise, medication/vitamin intake

Vernarelli et al. [33]

2010

USA

REVEAL II

RCT

272

APOE genotype

6 weeks

Health-related behavior: dietary supplement intake

Taylor et al. [34]

2010

USA

REVEAL II

RCT

276

APOE genotype

Not reported

Insurance uptake

Christensen et al. [27]

2015

USA

REVEAL II/III

RCT

795

APOE genotype

6 weeks, 1 year

Insurance uptake, health-related behavior and other behavior changes

Hypothetical Caselli et al. [28]

2014

USA

 

Survey

4036

Hypothetical disclosure

Not applicable

Anticipated health-related behavior and other behavior changes

Studies on social effects

Ashida et al. [35]

2009

USA

REVEAL II

RCT

271

APOE genotype

6 weeks

Results communication

Ashida et al. [31]

2010

USA

REVEAL II

RCT

269

APOE genotype

Base, 6 weeks, 1 year

Relation results communication and anxiety, depression and test-related distress

Chilibeck et al. [26]

2011

Canada/USA

REVEAL I

Qualitative

79

APOE genotype

Not reported

Risk perception in relation to family history

Hypothetical Caselli et al. [28]

2014

USA

 

Survey

4036

Hypothetical disclosure

Not applicable

Anticipated results communication

  1. Of the 14 studies included in the systematic review, two report on two types of effects and are taken up twice in this table. Ashida et al. [31] report on both psychological and social effects, and Caselli et al. [28] report on both behavioral and social effects
  2. APOE apolipoprotein E, RCT randomized controlled trial, REVEAL Risk Evaluation and Education for Alzheimer’s Disease Study