Research and Healthcare Priorities of Individuals Living with COPD

Abstract

This study describes the research and healthcare priorities of individuals living with COPD. On an online survey, individuals living with COPD assigned a percentage of funding to 22 research priorities and a percentage of time spent communicating with a healthcare provider to 24 healthcare priorities, indicating which topics were most important. For each research and healthcare priority, we examined the selection frequency of the priority and used chi-square analyses to examine differences in priority selection by quartiles of airflow obstruction (percent predicted forced expiratory volume in 1-sec (FEV₁%predicted)) and breathlessness burden and exacerbation risk. Based on participants’ responses (N = 148, 47% women; Mean ± Standard Deviation age = 68 ± 9 yrs) relief of breathlessness was the most often selected research (76% of respondents) and healthcare priority (61% of respondents). It was selected most often, regardless of disease severity or breathlessness burden and exacerbation risk. We found differences for disease severity and breathlessness burden and exacerbation risk in some research priorities (e.g., to improve the maximal amount of exercise of adults living with COPD in and out of the home (χ²₍₃₎ = 9.97, Cramer’s V =.28) and healthcare priorities (e.g., increase your ability to exercise (χ²₍₃₎ = 9.72, Cramer’s V =.27)). This study provides empirical evidence that relief of breathlessness is a top research and healthcare priority for individuals living with COPD. Future healthcare and research activities should align with the priorities of individuals with COPD to improve their care by minimizing disease/symptom burden and optimizing health-related quality of life.

Keywords:

• Pulmonary disease
• chronic obstructive
• priorities
• research
• healthcare
• breathlessness

Acknowledgements

The authors would like to thank Dr. Jean Bourbeau, Dr. Nathalie Saad, Dr. Gregory Moullec, Dr. Benjamin M. Smith, Dr. Nicole Ezer, and Dr. Ronald Dandurand for their contribution to this project. The authors would also like to thank the two individuals living with COPD who actively participated in the working group and shared their experiences to ensure the AHRPS represented the needs of individuals living with COPD. Lastly, the authors would like to thank Alexandra Schram, Frank Niro and Evan Bishop for their help throughout this project, particularly as it related to recruiting participants.

Declaration of interest

In accordance with Taylor & Francis policy and our ethical obligation as researchers, we are reporting that Dr. Jensen received Investigator Initiated Funding from AstraZeneca Canada, which may have affected the research reported in the enclosed paper. We have disclosed those interests fully to Taylor & Francis, and we have in place an approved plan for managing any potential conflicts arising from the funding and research salary support. No potential conflict of interest was reported by the other authors.

Additional information

Funding

This work was supporting by an Investigator Initiated Grant from AstraZeneca Canada (ESR-16-12133).