Patient perceptions and knowledge of Parkinson's disease and treatment (KnowPD).

Health education Parkinson's disease Patient education Questionnaire design

Journal

Clinical parkinsonism & related disorders
ISSN: 2590-1125
Titre abrégé: Clin Park Relat Disord
Pays: England
ID NLM: 101761473

Informations de publication

Date de publication:
2020
Historique:
received: 21 04 2019
revised: 28 09 2019
accepted: 25 11 2019
entrez: 28 7 2021
pubmed: 16 1 2020
medline: 16 1 2020
Statut: epublish

Résumé

As the 2nd most common neurodegenerative disorder, Parkinson's disease (PD) affects over 1 million Americans. Treatment is complex and may include pharmacotherapy, rehabilitative measures, and surgical intervention. A comprehensive understanding of the patient's perceptions about PD is a vital step towards improving health literacy and clinical outcomes. KnowPD is a web-based survey with Likert responses for a cross-sectional, nonrandomized study to assess patients' knowledge of PD symptoms, medications, deep brain stimulation (DBS), rehabilitation, and other factors relevant to disease management. Of the 98 subjects surveyed, 90% agreed they had sufficient knowledge of PD. However, in this cohort, 82% incorrectly believed levodopa stops working as the disease progresses, 77% erroneously thought DBS improves balance and reduces falls, and, <50% could answer specific questions regarding the dosing of levodopa despite over 75% reporting managing their own medications. A majority of patients (84%) believed it was possible to live well with PD, correlating with their self-reported knowledge of the disease. Finally, patients selected electronic video (13.7%) and reading (20.0%) material, yearly symposia (20.0%), and lunch lectures (28.4%) as their preferred method of information delivery. Misconceptions are prevalent among PD patients, and these appear to be unrelated to gender, provider type, or education level. Identification and characterization of this knowledge gap is vital towards allocating patient education resources, and the findings described herein will form the basis for effective educational interventions.

Sections du résumé

BACKGROUND BACKGROUND
As the 2nd most common neurodegenerative disorder, Parkinson's disease (PD) affects over 1 million Americans. Treatment is complex and may include pharmacotherapy, rehabilitative measures, and surgical intervention. A comprehensive understanding of the patient's perceptions about PD is a vital step towards improving health literacy and clinical outcomes.
METHODS METHODS
KnowPD is a web-based survey with Likert responses for a cross-sectional, nonrandomized study to assess patients' knowledge of PD symptoms, medications, deep brain stimulation (DBS), rehabilitation, and other factors relevant to disease management.
RESULTS RESULTS
Of the 98 subjects surveyed, 90% agreed they had sufficient knowledge of PD. However, in this cohort, 82% incorrectly believed levodopa stops working as the disease progresses, 77% erroneously thought DBS improves balance and reduces falls, and, <50% could answer specific questions regarding the dosing of levodopa despite over 75% reporting managing their own medications. A majority of patients (84%) believed it was possible to live well with PD, correlating with their self-reported knowledge of the disease. Finally, patients selected electronic video (13.7%) and reading (20.0%) material, yearly symposia (20.0%), and lunch lectures (28.4%) as their preferred method of information delivery.
CONCLUSION CONCLUSIONS
Misconceptions are prevalent among PD patients, and these appear to be unrelated to gender, provider type, or education level. Identification and characterization of this knowledge gap is vital towards allocating patient education resources, and the findings described herein will form the basis for effective educational interventions.

Identifiants

pubmed: 34316624
doi: 10.1016/j.prdoa.2020.100038
pii: S2590-1125(20)30006-2
pmc: PMC8298769
doi:

Types de publication

Journal Article

Langues

eng

Pagination

100038

Déclaration de conflit d'intérêts

No specific funding was received for this work. The authors declare that there are no conflicts of interest relevant to this work and no additional disclosures to report.

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Auteurs

Meagen R Salinas (MR)

University of Texas Southwestern Medical Center, Dallas, TX, USA.
Neurology Section, VA North Texas Health Care System, Medical Service, Dallas, TX, USA.

Elizabeth J Chambers (EJ)

University of Texas Southwestern Medical Center, Dallas, TX, USA.

Travis Ho (T)

University of Texas Southwestern Medical Center, Dallas, TX, USA.

Pravin Khemani (P)

University of Texas Southwestern Medical Center, Dallas, TX, USA.
Swedish Neuroscience Institute, Seattle, WA, USA.

DaiWai M Olson (DM)

University of Texas Southwestern Medical Center, Dallas, TX, USA.

Sonja Stutzman (S)

University of Texas Southwestern Medical Center, Dallas, TX, USA.

Shilpa Chitnis (S)

University of Texas Southwestern Medical Center, Dallas, TX, USA.

Classifications MeSH