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

共 50 条

[31] Smartphones for Remote Symptom Monitoring of Parkinson's Disease
Little, Max A.
JOURNAL OF PARKINSONS DISEASE, 2021, 11 : S49 - S53
[32] FEARS AND CERTAINTIES OF CHILEAN NEUROLOGISTS IN THE THERAPEUTIC APPROACH TO PARKINSON'S DISEASE
Salles, P.
Teran-Jimenez, M.
Palma, B. -H.
Retamal, M.
Chana-Cuevas, P.
PARKINSONISM & RELATED DISORDERS, 2023, 113 : 49 - 49
[33] Kinetic tremor in Parkinson's disease - an underrated symptom
Kraus, PH
Lemke, MR
Reichmann, H
JOURNAL OF NEURAL TRANSMISSION, 2006, 113 (07) : 845 - 853
[34] The cortical signature of symptom laterality in Parkinson's disease
Heinrichs-Graham, Elizabeth
Santamaria, Pamela M.
Gendelman, Howard E.
Wilson, Tony W.
NEUROIMAGE-CLINICAL, 2017, 14 : 433 - 440
[35] Throat clicking as the initial symptom of Parkinson's disease
Iyer, SS
Morgan, JC
Glover, AL
Sethi, KD
MOVEMENT DISORDERS, 2005, 20 (10) : 1385 - 1386
[36] Periventricular hyperintensities and axial symptom of Parkinson's disease
Ko, J.
Lee, Y.
Sunwoo, M. K.
Yoon, J. H.
Kang, S. Y.
Hong, J. Y.
MOVEMENT DISORDERS, 2019, 34 : S800 - S800
[37] Cervical dystonia as a presenting symptom of Parkinson's disease
Papapetropoulos, Spiridon
Singer, Carlos
PARKINSONISM & RELATED DISORDERS, 2006, 12 (08) : 514 - 516
[38] Intractable hiccups as a presenting symptom of Parkinson's disease
Yardimci, N.
Kilinc, M.
Benli, S.
EUROPEAN JOURNAL OF NEUROLOGY, 2006, 13 : 84 - 84
[39] Somatic symptom progression in idiopathic Parkinson's disease
Dickson, JM
Grünewald, RA
PARKINSONISM & RELATED DISORDERS, 2004, 10 (08) : 487 - 492
[40] Perspectives on Parkinson's Disease Medications: A Qualitative Study of People with Parkinson's Disease
Richards, Kristin
Brown, Carolyn
Johnsrud, Michael
Arcona, Steve
Sasane, Rahul
Armstrong, Melissa
Feuerstein, Jeanne
Shill, Holly
Talman, Lauren
Mantri, Sneha
NEUROLOGY, 2023, 100 (17)

← 1 2 3 4 5 →