TY - JOUR
T1 - Caregivers’ attitudes toward blood-based biomarker testing for Alzheimer's disease
AU - Bolsewig, Katharina
AU - Blok, Hester
AU - Willemse, Eline A. J.
AU - Zwaaftink, Rob B. M. Groot
AU - Kooistra, Minke
AU - Smets, Ellen M. A.
AU - Teunissen, Charlotte E.
AU - Visser, Leonie N. C.
N1 - Publisher Copyright: © 2024 The Authors. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring published by Wiley Periodicals LLC on behalf of Alzheimer's Association.
PY - 2024/1/1
Y1 - 2024/1/1
N2 - INTRODUCTION: We aimed to evaluate informal caregivers’ attitudes toward undergoing and future implementation of blood-based biomarkers (BBBM) testing for Alzheimer's disease (AD). METHODS: We explored caregivers’ perspectives, by combining an online survey (n = 107) with a subsequent focus group (n = 7). We used descriptive statistics and thematic content analysis to identify common themes in answers to open-ended survey questions and focus group data. RESULTS: Most caregivers (72.0%) favored BBBM for AD diagnosis. Provided with hypothetical scenarios, confidence in a normal result decreased significantly if experienced symptoms were more severe (mild: 78.5% vs. severe: 48.6%). Caregivers’ attitudes toward BBBM for screening purposes significantly improved with prospect of treatment (53.3% vs. 92.5%). Concerns toward BBBM testing included treatment unavailability, increased/prolonged distress, and AD-related stigma. Potential benefits were actionability, explanation for symptoms, and opportunities for better care and future treatment. DISCUSSION: Emerging AD treatment and reduction of AD-related stigma could profoundly increase public interest in BBBM testing for AD. Highlights: Most informal caregivers would want blood-based biomarker (BBBM) testing for Alzheimer's disease (AD) diagnosis. Perceived (dis)advantages were related to diagnosing AD early. With severe symptoms, there was less confidence in normal BBBM results. Treatment availability would significantly increase interest in BBBM testing for AD. Informal caregivers showed uncertainty regarding the meaning of the term “AD.”.
AB - INTRODUCTION: We aimed to evaluate informal caregivers’ attitudes toward undergoing and future implementation of blood-based biomarkers (BBBM) testing for Alzheimer's disease (AD). METHODS: We explored caregivers’ perspectives, by combining an online survey (n = 107) with a subsequent focus group (n = 7). We used descriptive statistics and thematic content analysis to identify common themes in answers to open-ended survey questions and focus group data. RESULTS: Most caregivers (72.0%) favored BBBM for AD diagnosis. Provided with hypothetical scenarios, confidence in a normal result decreased significantly if experienced symptoms were more severe (mild: 78.5% vs. severe: 48.6%). Caregivers’ attitudes toward BBBM for screening purposes significantly improved with prospect of treatment (53.3% vs. 92.5%). Concerns toward BBBM testing included treatment unavailability, increased/prolonged distress, and AD-related stigma. Potential benefits were actionability, explanation for symptoms, and opportunities for better care and future treatment. DISCUSSION: Emerging AD treatment and reduction of AD-related stigma could profoundly increase public interest in BBBM testing for AD. Highlights: Most informal caregivers would want blood-based biomarker (BBBM) testing for Alzheimer's disease (AD) diagnosis. Perceived (dis)advantages were related to diagnosing AD early. With severe symptoms, there was less confidence in normal BBBM results. Treatment availability would significantly increase interest in BBBM testing for AD. Informal caregivers showed uncertainty regarding the meaning of the term “AD.”.
KW - Alzheimer's disease
KW - blood-based biomarkers
KW - caregivers
KW - dementia
KW - public patient involvement
KW - public perspective
UR - http://www.scopus.com/inward/record.url?scp=85185278379&partnerID=8YFLogxK
U2 - 10.1002/dad2.12549
DO - 10.1002/dad2.12549
M3 - Article
C2 - 38371360
SN - 2352-8729
VL - 16
JO - Alzheimer's and Dementia: Diagnosis, Assessment and Disease Monitoring
JF - Alzheimer's and Dementia: Diagnosis, Assessment and Disease Monitoring
IS - 1
M1 - e12549
ER -