Besser Lilah M, Galvin James E
Institute for Human Health and Disease Intervention (LMB), School of Urban and Regional Planning, Florida Atlantic University, Boca Raton, FL; and Comprehensive Center for Brain Health (JEG), Charles E. Schmidt College of Medicine, Florida Atlantic University, Boca Raton, FL.
Neurol Clin Pract. 2020 Aug;10(4):298-306. doi: 10.1212/CPJ.0000000000000738.
To describe the experience of obtaining a diagnosis of frontotemporal degeneration (FTD) for patients and caregivers.
Data came from a 2017 web-based survey of 698 FTD caregivers. Clinical characteristics and diagnostic experiences were described according to the phenotype of the patient with FTD (behavioral variant FTD, primary progressive aphasia, FTD with motor neuron disease, or progressive supranuclear palsy/corticobasal syndrome). Unadjusted and adjusted logistic regression analyses determined associations between patient with FTD and caregiver characteristics and (1) receiving a diagnosis >1 year after initial symptoms and (2) first receiving a non-FTD diagnosis.
Mean age was 66 ± 9 years for patients with FTD and 61 ± 10 years for FTD caregivers. Forty-four percent of patients took more than 1 year; 65% saw 3 or more doctors; and 84% required 3 or more visits to establish an FTD diagnosis. Initial diagnosis was depression or other psychiatric condition in 21% of patients. Twenty-eight percent of caregivers and 26% of patients lost ≥11 work days seeking diagnosis. The majority of diagnoses (66%) were made by neurologists. Patient and caregiver age, having a spouse caregiver, rural residency, and mood changes as first symptom were associated with a longer time to receive FTD diagnosis. Caregivers frequently rated diagnosing doctors as good/excellent in knowledge of FTD but as inadequate/poor on knowledge of available community resources.
This study, which quantifies the patient with FTD and caregiver burden before receiving the FTD diagnosis, can inform clinical practice, interventions to address diagnostic delays, and programs and services to support patients/caregivers during and following the diagnosis.
描述患者及照料者获得额颞叶变性（FTD）诊断的经历。
数据来自2017年对698名FTD照料者进行的网络调查。根据FTD患者的表型（行为变异型FTD、原发性进行性失语、伴运动神经元病的FTD或进行性核上性麻痹/皮质基底节综合征）描述临床特征和诊断经历。未经调整和调整后的逻辑回归分析确定了FTD患者及照料者特征与以下两项之间的关联：（1）在出现初始症状1年后才获得诊断；（2）首次获得非FTD诊断。
FTD患者的平均年龄为66±9岁，FTD照料者的平均年龄为61±10岁。44%的患者诊断时间超过1年；65%的患者看过3名或更多医生；84%的患者需要就诊3次或更多次才能确诊FTD。21%的患者初始诊断为抑郁症或其他精神疾病。28%的照料者和26%的患者在寻求诊断过程中损失了≥11个工作日。大多数诊断（66%）由神经科医生做出。患者及照料者的年龄、有配偶照料者、居住在农村以及首发症状为情绪变化与获得FTD诊断的时间较长有关。照料者经常评价诊断医生对FTD的知识掌握良好/优秀，但对可用社区资源的知识掌握不足/较差。
本研究量化了FTD患者及照料者在获得FTD诊断之前的负担，可为临床实践、解决诊断延迟的干预措施以及在诊断期间及之后支持患者/照料者的项目和服务提供参考。
