Chronic Obstructive Pulmonary Disease Patient Preferences Survey

Completed

Conditions: Pulmonary Disease, Chronic Obstructive

Interventions: Other: Patient Survey

Registration Number: NCT02970422

Lead Sponsor: McGill University

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.

Detailed Description: Not available

Recruitment & Eligibility

Status: COMPLETED

Sex: All

Target Recruitment: 200

Inclusion Criteria

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

Exclusion Criteria

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

Study & Design

Study Type: OBSERVATIONAL

Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
Quartile 1 [Mild]	Patient Survey	-
Quartile 2 [Moderate]	Patient Survey	-
Quartile 3 [Severe]	Patient Survey	-
Quartile 4 [Very Severe]	Patient Survey	-

Primary Outcome Measures

Name	Time	Method
Number of Participants Who Prioritized Research Topics	Baseline	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.
Number of Participants Who Prioritized Healthcare Topics	Baseline	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.
Number of Participants Who Were Not Satisfied With Their Participation in Daily and Social Activities	Baseline	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

Secondary Outcome Measures

Name	Time	Method
Forced Expiratory Volume in 1-sec (FEV1)	Baseline	Individuals forced expiratory volume in 1-sec (FEV1) as assessed by spirometry
FEV1/FVC	Baseline	Individuals FEV1-to-forced vital capacity (FVC) ratio
Godin Leisure Time Physical Activity Questionnaire	Baseline	Self-reported physical activity levels measured in length of bouts over the previous 7 days to determine physical activity frequency.
Satisfaction of Life Questionnaire	Baseline	This 5 item questionnaire was used to measure participants' level of life satisfaction. The higher the score, the higher the sense of life satisfaction. A score from 5-9 indicated extremely dissatisfied, 10-14 is dissatisfied, 15-19 indicated slightly below average life satisfaction. 20-24 is the average score, 25-29 is a high score indicative of higher life satisfaction and a score between 30-35 is a very high score and represent very high life satisfaction.
Number of Participants With Exacerbations Due to COPD in the Preceding 12 Months	baseline	An exacerbation was defined as a change in medication due to a COPD exacerbation (i.e., the prescription of prednisone or a medical action plan) as indicated in the medical chart or hospital admission due to a COPD exacerbation.
COPD Assessment Test	Baseline	This questionnaire measure the impact COPD is having on well being and daily life. The CAT is an eight-item semantic differential scale from 0 to 5, where 0 is no impact and 5 is extremely impactful. Items include: I never cough\\| I cough all the time, I have no phlegm (mucus) in my chest at all \\| My chest is completely full of phlegm (mucus), My chest does not feel tight at all \\| My chest feels very tight, When I walk up a hill or one flight of stairs, I am not breathless \\| When I walk up a hill or one flight of stairs, I am very breathless, I am not limited doing any activities at home\\| I am very limited doing activities at home, I am confident leaving my home despite my lung condition\\| I am not at all confident leaving my home because of my lung condition, I sleep soundly \\| I don't sleep soundly because of my lung condition, I have lots of energy I have no energy at all. Participants' scores were totaled and a score of ≥ 10 indicated higher than normal burden of disease.
Modified Medical Research Council Questionnaire on Breathlessness	Baseline	Self-reported intensity of activity related breathlessness as assessed by the modified Medical Research Council (mMRC) dyspnea scale (0-4). This questionnaire was used to measure participants' breathlessness burden using a single item scale from 0 to 4, where a score of 0-1 indicated mild breathlessness and 2-4 indicated increased breathlessness.