Living With Frontotemporal Degeneration: Diagnostic Journey, Symptom Experiences, and Disease Impact.

IF 2.9 4区 医学 Q2 CLINICAL NEUROLOGY
Megan S Barker, Shana G Dodge, Debra Niehoff, Sharon Denny, Penny A Dacks, Susan Dickinson, Stephanie Cosentino, Dianna K H Wheaton
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Abstract

Frontotemporal degeneration (FTD) is an umbrella term encompassing a range of rare neurodegenerative disorders that cause progressive declines in cognition, behavior, and personality. Hearing directly from individuals living with FTD and their care partners is critical in optimizing care, identifying meaningful clinical trial endpoints, and improving research recruitment and retention. The current paper presents a subset of data from the FTD Insights Survey, chronicling the diagnostic journey, symptoms, and the impact of FTD on distress, quality of life, and independence, in the mild to moderate stages of the disease. Survey respondents included 219 individuals diagnosed with FTD and 437 current care partners, representing a range of FTD diagnoses. Around half of survey respondents reported seeing three or more doctors before an FTD diagnosis was given, and a range of prior diagnoses were noted. Most frequently endorsed symptoms tended to be consistent with clinical characteristics of the specific diagnosis, though there was significant variability in symptoms reported within diagnostic categories as well as considerable overlap in symptoms between diagnostic categories. Cognitive and language symptoms of FTD were generally most distressing to the person diagnosed, and a loss of independence was endorsed as affecting quality of life. The distinct perspectives of diagnosed persons and care partners regarding disease impact differed notably for bvFTD/Pick's disease. Participating independently in a range of activities, within the home, outside the home, and with other people, were reported as challenging for people living with FTD, underscoring the degree to which the lives of these individuals are affected even at the mild and moderate stages of disease. Overall, by heeding the perspectives of those living with FTD, we can begin to design more meaningful research studies, provide better care, and develop therapies that improve quality of life.

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与额颞叶变性共存:诊断历程、症状体验和疾病影响。
额颞叶变性(FTD)是一个总括性术语,包括一系列罕见的神经退行性疾病,这些疾病会导致认知、行为和人格的进行性衰退。直接听取 FTD 患者及其护理伙伴的意见对于优化护理、确定有意义的临床试验终点以及改善研究招募和保留至关重要。本文介绍了 "FTD洞察力调查 "的部分数据,记录了轻度至中度FTD患者的诊断过程、症状以及FTD对痛苦、生活质量和独立性的影响。调查对象包括 219 名被诊断患有 FTD 的患者和 437 名目前的护理伙伴,他们代表了各种 FTD 诊断。约有一半的调查对象称,在确诊 FTD 之前,他们曾看过三位或三位以上的医生,并注意到他们之前曾有过各种诊断。最常被认可的症状往往与特定诊断的临床特征相一致,但诊断类别内报告的症状存在很大差异,诊断类别之间的症状也有相当大的重叠。FTD 的认知和语言症状通常最令被诊断者感到痛苦,丧失独立性也被认为是影响生活质量的因素。对于bvFTD/皮克病,被诊断者和护理伙伴对疾病影响的不同看法有显著差异。据报告,对于 FTD 患者来说,独立参与家庭内外的一系列活动以及与他人一起活动都是一项挑战,这凸显出即使在轻度和中度疾病阶段,这些患者的生活也会受到很大程度的影响。总之,通过听取 FTD 患者的观点,我们可以开始设计更有意义的研究,提供更好的护理,并开发出能改善生活质量的疗法。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
6.20
自引率
0.00%
发文量
40
审稿时长
>12 weeks
期刊介绍: Journal of Geriatric Psychiatry and Neurology (JGP) brings together original research, clinical reviews, and timely case reports on neuropsychiatric care of aging patients, including age-related biologic, neurologic, and psychiatric illnesses; psychosocial problems; forensic issues; and family care. The journal offers the latest peer-reviewed information on cognitive, mood, anxiety, addictive, and sleep disorders in older patients, as well as tested diagnostic tools and therapies.
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