Patient Journey COPD360 Study

The Patient’s Journey Through the COPD Treatment

Study Enrollment completed
Analysis and reporting in progress
Funded by GSK

COPD Foundation Principal Investigator: Barbara Yawn, MD MSc
Patient Investigator: Valerie Chang

The Patient Journey Study utilized the COPD Foundation's research infrastructure to:

  • identify and recruit all of the study participants;
  • facilitate an asynchronous focus group to identify issues in the patient’s COPD treatment journey utilizing a private feature on the COPD Foundation’s COPD360social online community;
  • develop and deploy a survey to the COPD Patient Powered Research Network (COPD PPRN), the Foundation’s self-reported registry of over 8000 individuals with COPD or at risk for COPD.

Why is the Patient’s Journey to Diagnosis and Treatment so Important?

COPD is one of the leading causes of disability and disease in the US, and yet a significant proportion of the population with evidence of COPD remain undiagnosed. I addition, even when patients are diagnosed with COPD, they face barriers in receiving the ideal treatment of their disease. This study was designed with the aim to gain a better understanding of the treatment and life journey of people with COPD.

This observational study recruited patients from the COPD PPRN to participate in an online focus group which took place from mid-July to late August 2021. Learnings from the focus group were used to design a survey which was available to members of the COPD PPRN from 2/8/2021 through 3/3/2021. The survey questions covered a range of topics including age and circumstances of diagnosis, current treatment including access to medication and education on how to use therapies.

Completed Activities within the Patient’s Journey Study:

  • Pre-Screener: A pre-screener was made available on the COPD PPRN participant portal to assess the eligibility of interested individuals to participate in one of three online focus groups.
  • Confirmation of Eligibility: A COPDF research coordinator conducted telephone calls to confirm eligibility for those identified as potentially eligible to take part in the online focus groups. On the calls, potential participants were provided information about the project and had the opportunity to ask questions and confirm their interest in participation.
  • Focus Groups: Participants who expressed interest in participating were confirmed for each focus group based on the eligibility criteria and topic of interest for of each group:
    • Focus Group 1: Identify issues in the patient’s treatment journey related to systemic steroid therapy for the treatment of COPD exacerbations
    • Focus Group 2: Identify issues in the patient’s treatment journey related to the use of multiple maintenance inhalers or those on triple therapy (ICS, ICS/LABA, LAMA, LABA/LAMA, ICS/LABA/LAMA)
    • Focus Group 3: Identify Issues in the patient’s treatment journey related to a worsening of disease, experienced as exacerbations and/or chronic increase in symptoms Many common topics were explored among the 3 focus groups, including identifying: the classes of maintenance medications used, inhaler devices chosen, patient reported reasons for changes in medications and devices and perceived impact of those changes. Additionally we asked questions specific to how often medication class or device changes are driven by such things as symptom burden, exacerbation occurrence and frequency, patient preference, insurance and formulary issues and device issues will be investigated. Along with various therapies and COPD treatments, it was important to explore how COVID-19 has impacted COPD treatment, including medications prior, during and as the pandemic transitions with special attention to use of inhaled corticosteroids, oral steroids and nebulizer devices as well as access to care during and after pandemic.
    • Patient Journey Survey: Based on the analysis of responses from the 3 focus groups, a survey was developed and deployed to the COPD PPRN.

Results and Conclusions

The Patient Journey survey was completed by 669 COPD PPRN participants (mean age of 66) on the online platform, including 41% men and 59% women. Out of the respondents, 79% reported that their illness was called COPD at the time of diagnosis, although 33% reported that they had symptoms for over three years prior to their diagnosis, with another 37% reporting symptoms for 1-2 years. The most common symptoms reported at the time of diagnosis included shortness of breath while exercising or walking up steps, difficulty breathing, frequent coughing, and fatigue. While most patients (79%) reported that they have been shown how to use their inhalers, 46% also reported they have never been asked to demonstrate that they know how to use their devices. 53% of participants reported using nebulized medications, with the most common reason for their use being that "Medicine works better in nebulizer than puffers or inhalers". 65% of participants reported using oral steroids or steroid shots for their COPD, including 13% who stated that they used steroids "regularly, daily, or weekly for several weeks or months".

A large proportion of COPD patients in this survey had symptoms for years prior to their diagnosis. While most patients have been shown how to use their therapies, many have not been asked to demonstrate their ability, which may explain why patients feel nebulized therapies work better. Finally, the regular use of steroids in these patients occurs in a significant minority of patients.

This study reaffirms the value of the patient voice to help educate and further understand the patient journey through COPD diagnosis, treatment and barriers. Further analysis is being conducted to look at rural verses urban and/or primary care versus specialty for diagnosis. The patients provided a wealth of knowledge from their vast experience during the 3-day focus group which is difficult to amass from a survey.

To learn more about the study, contact