Table 1.
Characteristics of included studies by study design
| Author (Year) | Study name | Country | Sample size (n) | Details of amyloid PET scan disclosure | Study aim | Level of comparison(s) | Outcomes |
|---|---|---|---|---|---|---|---|
| Randomized controlled trials | |||||||
| Lingler (2020) | RAISR | USA | MCI (N = 82); Caregivers (N = 82) | Disclosure followed standardized script: including verbal and visual presentations of scan results; short-term risk estimates for conversion to AD; brain health information; and follow-up monitoring instructions. | To determine the effect of receiving amyloid PET results on understanding of, and perceived efficacy to cope with MCI, compared with psychoeducation | Amyloid PET scan vs psychoeducation. Sub-group analysis comparing elevated vs non-elevated amyloid amongst scan recipients | Understanding of scan result/diagnosis; self-efficacy for coping; depression; anxiety; test related distress |
| Mattos (2019) | RAISR | USA | MCI (N = 24) | To examine the impact of disclosing amyloid PET results to individuals with MCI | Adverse events following amyloid PET scan disclosure | ||
| Pre/Post studies | |||||||
| Lim (2016) | USA | Subjective Cognitive Decline (N = 11) | Scan results were mailed to participant’s board-certified neurologists | To explore impact of amyloid PET scan disclosure on psychological outcomes | Elevated vs non-elevated amyloid (all participants received a scan) | Depression; anxiety; stress; test related distress | |
| Wake (2018) | Japan | Subjective Cognitive Decline (N = 42) | Two study psychiatrists disclosed the PET results to each participant | To examine the short-term psychological impact of delivering amyloid PET results to asymptomatic Japanese elderly with SCD | Elevated vs non-elevated amyloid (all participants received a scan) | Depression; anxiety; stress; test related distress | |
| van der Doelen (2022) | The Netherlands | Young onset ADRD (N = 154) | Participants underwent the full diagnostic process including amyloid PET scans | To explore the association between diagnostic outcome and clinician’s level of certainty with quality of life (QoL) after amyloid PET results were disclosed in young onset dementia patients in a memory clinic cohort | Pre scan vs post scan (all participants received a scan) | Quality of life | |
| Taswell (2017) | Australia | MCI or ADRD (N = 133) | Scan results were initially disclosed by the referring physician followed by a more in-depth disclosure by a member of the study team. | To assess the psychological impact of disclosing amyloid PET scan results on people with MCI or mild ADRD | Pre scan vs post scan, elevated vs non-elevated amyloid, and MCI vs ADRD (all participants received a scan) | Depression; Anxiety | |
| Cross sectional studies | |||||||
| Bensaidane (2016) | Canada | Caregivers (N = 23) | Scan result was disclosed by a member of the study team to the patient and caregiver. Patients and caregivers were shown the scan. | To explore the clinical utility of amyloid PET scans in the differential diagnosis of dementia and its impact on caregivers | Elevated vs non-elevated amyloid (all participants received a scan) | Anxiety; depression; understanding of the disease; expectation of the future; quality of life | |
| Jutkowitz (2020) | CARE-IDEAS | USA | MCI or ADRD (N = 1551); Caregivers (N = 1551) | Scans were performed and interpreted at each participating PET facility. Results were then provided to the ordering provider. Study protocol specified that providers disclose the PET scan results, preferably in person, to patients and care partners as a part of clinical care with no specified timeframe | To evaluate determinants of willingness to accept a treatment to return memory to normal among persons with cognitive impairment who received an amyloid PET scan and their care partner | Elevated vs non-elevated amyloid (all participants received a scan) | Willingness to accept risky treatment |
| James (2020) | CARE-IDEAS | USA | MCI (N = 1349); ADRD (N = 496); Caregivers (N = 1845) | To understand how accurately patients with MCI or dementia and their care partners report results of amyloid PET scans and the concordance between their reports, and identify factors that influence correct reporting of scan results and concordance within the patient-care partner dyad | Elevated vs non-elevated amyloid (all participants received a scan) | Understanding of scan result/ diagnosis | |
| Belanger (2022) | CARE-IDEAS | USA | Caregivers (N = 1872) | To explore caregiver emotional responses to amyloid PET Scans | Elevated vs non-elevated amyloid (all participants received a scan) | Anxiety; depression | |
Note: MCI = Mild cognitive Impairment; ADRD = Alzheimer’s disease and related dementias; PET = Positron Emission Tomography; RAISR = The return of amyloid imaging scan results study; CARE-IDEAS = The caregivers’ reactions and experience supplemental study of the imaging dementia evidence for amyloid scanning study.