Caregivers’ attitudes toward blood‐based biomarker testing for Alzheimer's disease

Katharina Bolsewig, Hester Blok, E. Willemse, Rob B. M. Groot Zwaaftink, Minke Kooistra, Ellen M. A. Smets, Charlotte E. Teunissen, Leonie N. C. Visser
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Abstract

Abstract 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.”
护理人员对基于血液的阿尔茨海默病生物标志物检测的态度
摘要 引言 我们的目的是评估非正规护理人员对正在进行和未来将实施的阿尔茨海默病(AD)血液生物标记物(BBBM)检测的态度。方法 我们结合在线调查(107 人)和随后的焦点小组(7 人)探讨了护理人员的观点。我们使用描述性统计和主题内容分析法来确定开放式调查问题答案和焦点小组数据中的共同主题。结果 大多数护理人员(72.0%)赞成用 BBBM 诊断注意力缺失症。在假设的情景中,如果经历的症状更严重(轻度:78.5% 对重度:48.6%),则对正常结果的信心明显下降。护理人员对 BBBM 筛查的态度随着治疗前景的改善而明显改善(53.3% 对 92.5%)。对BBBM检测的担忧包括无法获得治疗、增加/延长痛苦以及与AD相关的耻辱感。潜在的益处包括可操作性、对症状的解释以及改善护理和未来治疗的机会。讨论 新出现的注意力缺失症治疗方法和与注意力缺失症相关的耻辱感的减少会极大地提高公众对注意力缺失症BBBM检测的兴趣。亮点 大多数非正规护理人员都希望通过血液生物标记物(BBBM)检测来诊断阿尔茨海默病(AD)。感知到的优势与早期诊断阿尔茨海默病有关。症状严重时,人们对正常的 BBBM 结果信心不足。治疗的可获得性将大大提高人们对阿尔茨海默病(AD)BBBM 检测的兴趣。非正规护理人员对 "AD "一词的含义表示不确定。
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