In Their Own Words: Fears Expressed by People with Parkinson's Disease in an Online Symptom Database

被引：1

作者：

Mantri, Sneha ^{[1
]}

Purks, Jennifer L. ^{[2
]}

Kinel, Daniel ^{[3
]}

Arbatti, Lakshmi ^{[4
]}

Hosamath, Abhishek ^{[4
]}

Allen, Allison ^{[1
]}

Amara, Amy ^{[5
]}

Anderson, Karen ^{[6
,7
]}

Chahine, Lana M. ^{[8
]}

Eberly, Shirley ^{[9
]}

Mathur, Soania ^{[10
]}

Standaert, David ^{[11
]}

Oakes, David

Weintraub, Daniel ^{[12
,13
]}

Shoulson, Ira ^{[2
,4
]}

Marras, Connie ^{[14
]}

机构：

[1] Duke Univ, Dept Neurol, Durham, NC USA

[2] Univ Rochester, Dept Neurol, Rochester, NY USA

[3] Univ Rochester, Ctr Hlth Technol, Dept Neurol, Med Ctr, Rochester, NY USA

[4] Grey Matter Technol, San Francisco, CA USA

[5] Univ Colorado, Dept Neurol, Anschutz Med Campus, Aurora, CO USA

[6] Georgetown Univ, Dept Psychiat, Washington, DC USA

[7] Georgetown Univ, Dept Neurol, Washington, DC USA

[8] Univ Pittsburgh, Dept Neurol, Pittsburgh, PA USA

[9] Univ Rochester, Dept Biostat & Computat Biol, Rochester, NY USA

[10] PD Avengers, Toronto, ON, Canada

[11] Univ Alabama Birmingham, Dept Neurol, Birmingham, AL USA

[12] Univ Penn, Perelman Sch Med, Dept Psychiat, Philadelphia, PA USA

[13] Univ Pennsylvania, Perelman Sch Med, Dept Neurol, Philadelphia, PA USA

[14] Univ Toronto, Univ Hlth Network, Edmond J Safra Program Parkinsons Dis, Toronto, ON, Canada

来源：

JOURNAL OF PARKINSONS DISEASE | 2024年 / 14卷 / 04期

关键词：

Parkinson's disease; quality of life; qualitative; PERSPECTIVE;

D O I：

10.3233/JPD-230305

中图分类号：

Q189 [神经科学];

学科分类号：

071006 ;

摘要：

Parkinson's disease (PD) carries substantial psychosocial burden. Using a database of responses by people with PD reporting up to five "most bothersome problems," we identified 225 fear-based verbatims, which were organized using the framework method into 26 categories. Commonly-reported fears included uncertainty of progression (n = 60, 26.7%), fear of future cognitive impairment (n = 24, 10.7%) and fear of becoming a burden on others (n = 23, 10.2%). Fears in PD are wide-ranging and can constitute the most bothersome aspect of the condition. These data can be used to design interventions to lessen the psychosocial burden of PD.

引用

页码：865 / 872

页数：8

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