Impact of Swallowing Impairment on Individuals With Parkinson Disease

In this online study, investigators will explore the psychosocial burdens of swallowing difficulties in people with Parkinson's Disease. This study is completely virtual, so you can participate from wherever you live in the United States. Participation requires you to complete a one-hour Zoom interview and a brief questionnaire. You will be compensated with a $25 Walmart gift card. To learn more, please use the "send email" feature. Thank you!

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Key information

Conditions

Parkinson Disease Basal Ganglia Diseases Brain Diseases Central Nervous System Diseases Deglutition Disorders Digestive System Diseases Dysphagia Esophageal Diseases Gastrointestinal Diseases Movement Disorders Nervous System Diseases Neurodegenerative Diseases Otorhinolaryngologic Diseases Parkinsonian Disorders Pharyngeal Diseases Synucleinopathies

Age range

18 year–100 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Northern Arizona University

Flagstaff, Arizona, 86005, United States

About this study

This is a mixed methods study. The investigators will collect qualitative data from participants by conducting 1-2 hour semi-structured interviews on Zoom. The interview questions are designed to systemically inquire about patient experiences, affective reactions, coping strategies, social support, self-identity issues, and treatment experiences. The investigators will collect quantitative data by asking participants to complete The Brief Illness Perception Questionnaire. The data will be analyzed using a comprehensive stress and coping model, which has not been done previously in the field. The investigators hope to discover themes about psychosocial burdens and related coping mechanisms.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Participants must currently have oropharyngeal dysphagia and Parkinson Disease
Participants must be at least 18 years of age
Participants must speak English.

Exclusion criteria

Participants whose receptive and expressive language skills will not allow them to participate in one-on-one interviews

Treatment and study plan

Primary outcomes

Identification of the Impact of Swallowing Impairment on Individuals with Parkinson Disease as Expressed During Interviews

Time frame: To be assessed from the participant interviews through study completion, an average of 1 year.

A 1-2 hour, semi-structured interview will be conducted with each participant on Zoom to identify patient experiences, affective reactions, coping strategies, social support, self-identity issues, and treatment experiences associated with swallowing impairment.

Secondary outcomes

Overall Score on Brief Illness Perception Questionnaire (Brief IPQ) as Self-Reported by Participants

Time frame: The Brief IPQ will be mailed to participants after their interview and asked to complete it and return it to us within one week.

The Brief IPQ is a self-report survey that contains nine items that quantify the cognitive and emotional representations of an illness. It has good test-retest reliability and concurrent validity with relevant measures in a few populations with chronic disease. Scores range from 0 (i.e., illness has no effect on life) to 80 points (i.e., illness extremely effects various aspects of life).

Sponsors and collaborators

Lead sponsor

Northern Arizona University

Other

Registry information

Official study title

Incorporating the Psychological Consequences of Dysphagia Into Swallowing Care: A Preliminary Investigation

Important dates

Study start: 2021
Primary completion: 2021
Study completion: 2021
First posted: Feb 25, 2021
Registry last updated: Jan 27, 2022

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed