Chronic Obstructive Pulmonary Disease Patient Preferences Survey

NCT02970422 | Completed Results

• 1 other identifier: 15-203-MUHC
• Study Type: observational
• Target: 200
• Locations: 1 country
• Sites: 1

Brief Summary

The purpose of this study is to distribute a questionnaire created for individuals living with chronic obstructive pulmonary disease (COPD) to assess their activities, participation, and healthcare and COPD-related research priorities. The data collected will be compared across diagnosed COPD stages and disease severity to determine the extent to which adults with COPD participate in the listed activities and identify their primary research and healthcare related priorities. The questionnaire was originally developed based on past research then verified by a panel of COPD and participation experts; as well as, individuals living with COPD in the form of focus groups. The questionnaire will now be administered to 200 individuals living COPD (50 in each GOLD stage) at three sites across Montreal where clinical data for each participant will be available. This phase will help establish the reliability of the questionnaire.

Conditions

Pulmonary Disease, Chronic Obstructive

Keywords

Survey; Priorities; Activities; Participation

Outcome Measures

Primary Outcomes (3)

• Number of Participants Who Prioritized Healthcare Topics

  Twenty-four healthcare topics were selected once again from a literature and expert panel review, as well as corroborated by individuals living with COPD in five focus groups. Example healthcare topics include: relief of breathlessness; increase maximal amount of exercise individuals living with COPD can do inside and outside their homes; and prevent-lung flare-ups. Participants were asked to indicate their preference of the topics by assigning a percentage of their time, in increments of 10%, to the various healthcare topics, for a total of 100% of their time. For the 24 healthcare topics, individuals could select up to 10 topics (10% times 10 topics, for 100% of their time). The top five topics are presented as the most important topics for the participants and are indicative of areas of focus for future healthcare and research. The top five were presented in accordance to the request from the working group who developed the survey and reviewed the results.

  Baseline

• Number of Participants Who Prioritized Research Topics

  Individuals were asked to indicate their research priorities from a list of research topics using a modified willingness-to-pay method (Kawata et al., 2014). The willingness-to-pay method allows individuals to assign preference to various topics by assigning a percentage of funds to the topic. A list of 22 research topics (e.g., to relieve breathlessness in individuals living with COPD, to increase access to lung transplantations) was created for this study through a literature review, expert consultation, and five focus groups with individuals living with COPD (n=23, 27% women). Individuals were asked to assign a percentage of funds, in increments of 10% of funding, to the 22 COPD research topics. Participants could assign anywhere between 10% of funding to 100% of funding to the topics. The top five were presented in accordance to the request from the working group who developed the survey and reviewed the results.

  Baseline

• Number of Participants Who Were Not Satisfied With Their Participation in Daily and Social Activities

  Participants will answer questions about their participation in 26 daily activities, as well as their desire to participate in each of the 26 daily activities. This is a measure of those who indicated they wanted to increase their participation. 10 of the 26 activities and their outcome measures are listed below. Activity 1: Walking from one place to another outside of your home on a flat surface. Activity 2: Moving from one place to another using motorized transportation. Activity 3: Climbing two or more flights of stairs. Activity 4: Walking up a hill. Activity 5: Participating in regular exercise. Activity 6: Walking from one place to another in your home. Activity 7: Carrying light objects on a flat surface. Activity 8: Carrying heavy objects on a flat surface. Activity 9: Carrying-out low intensity physical activities

  Baseline

Secondary Outcomes (7)

• Forced Expiratory Volume in 1-sec (FEV1)

  Baseline

• FEV1/FVC

  Baseline

• Modified Medical Research Council Questionnaire on Breathlessness

  Baseline

• COPD Assessment Test

  Baseline

• Godin Leisure Time Physical Activity Questionnaire

  Baseline

Study Arms (4)

Quartile 1 [Mild]

Other: Patient Survey

Quartile 2 [Moderate]

Other: Patient Survey

Quartile 3 [Severe]

Other: Patient Survey

Quartile 4 [Very Severe]

Other: Patient Survey

Interventions

Patient Survey OTHER

Participants will answer an online survey and their medical chart information will be gathered to compare responses across disease severity.

Quartile 1 [Mild]; Quartile 2 [Moderate]; Quartile 3 [Severe]; Quartile 4 [Very Severe]

Eligibility Criteria

• Age: 40 Years - 90 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Adults living with chronic obstructive pulmonary disease (COPD).

You may qualify if:

• Clinical diagnosis of COPD
• English or French speaking
• Patient at one of the three participating sites with medical chart

You may not qualify if:

• No diagnosis of COPD by a healthcare professional
• Unable to communicate in English or French
• Unable to provide informed consent
• No medical chart information at one of the three participating sites

Sponsors & Collaborators

• McGill University: lead
• AstraZeneca: collaborator

Study Sites (1)

Montreal Chest Institute of the McGill University Health Center (MUHC)

Montreal, Quebec, H4A 3J1, Canada

Location

Related Links

• Clinical Exercise and Respiratory Physiology Laboratory (CERPL)
• Theories and Interventions in Exercise and Health Psychology (TIE) Laboratory

MeSH Terms

Conditions

Pulmonary Disease, Chronic Obstructive; Motor Activity

Condition Hierarchy (Ancestors)

Lung Diseases, Obstructive; Lung Diseases; Respiratory Tract Diseases; Chronic Disease; Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms; Behavior

Results Point of Contact

• Title: Emilie Michalovic, Ph.D. Candidate
• Organization: McGill University

emilie.michalovic@mail.mcgill.ca

514-941-6450

Study Officials

• Dennis Jensen, Ph.D.

  McGill University

  PRINCIPAL INVESTIGATOR

• Shane N Sweet, Ph.D.

  McGill University

  PRINCIPAL INVESTIGATOR

Publication Agreements

• PI is Sponsor Employee: No
• Restrictive Agreement: No

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Professor

Study Record Dates

• First Submitted: April 26, 2016
• First Posted: November 22, 2016
• Study Start: November 1, 2016
• Primary Completion: October 1, 2017
• Study Completion: December 12, 2018
• Last Updated: December 24, 2020
• Results First Posted: December 24, 2020

Record last verified: 2020-12

Data Sharing

• IPD Sharing: Will not share

Locations

CA (1)