We are excited to introduce to you the COPD Patient Care Map—an innovative educational and advocacy tool designed to shine a brighter light on the shared challenges faced by people living with COPD and their caregivers.

As you may know, the journey with COPD is complex and begins well before diagnosis, in a world where patient education is not always reaching the people who need it, symptoms can be minimized or missed, and gold standard testing is not adequately used to find impacted individuals early enough in their disease journey.

Challenges extend too across treatment and management, including decisions regarding medication and devices, exercise, nutrition, and ongoing support needs, as well as common experiences such as exacerbations (flare-ups) and mental health challenges. On their long-term journey, people with COPD may experience barriers to adequate care or fragmented support, stigma, and self-management challenges; their caregivers can also experience a lack of support and caregiving fatigue.

This tool was created to highlight these challenges, support advocacy efforts, and provide a compelling basis for policymakers to implement meaningful changes for the COPD community.

An Overview of the COPD Patient Care Map

The COPD Patient Care Map walks users through the journey of people with COPD, examining each phase, from pre-diagnosis and diagnosis to ongoing treatment and monitoring. For each of these, it provides:

  • Information on the challenges those with COPD and their caregivers face, with respect to care, mental and physical functioning, perceptions of others, and daily functioning.
  • Insight into the implications of each of these challenges for both patients and society, highlighting areas where support often falls short.
  • Calls to action that address gaps, including specific steps for stakeholders and policymakers to help improve the journey for those affected by COPD.

Across its content, the Care Map incorporates three essential components to engage and inform policymakers:

  1. Evidence of barriers faced by COPD patients and their caregivers – this includes diagnostic delays, access issues, and treatment challenges.
  2. Economic impact – this underscores the cost burden on both individuals and healthcare systems.
  3. Emotional toll on patients and their families – this includes real stories from people with COPD, complete with photos and video testimonials, that underscore the human impact of this condition.

A Global Effort Built on Evidence-Based Insights

The COPD Patient Care Map was co-developed by GAAPP, European Federation of Allergy and Airways Diseases Patients Associations (EFA), and the COPD Foundation. This collaborative effort was supported by Sanofi, Regeneron, and Alira Health and shaped by a coalition of nine global patient advocacy groups from countries including Canada, France, Germany, Italy, Japan, and the United States.

The content of the COPD Patient Care Map is grounded in a comprehensive review of more than 50 sources—peer-reviewed studies, articles, and a deep ethnographic exploration of patient and caregiver experiences. More than 700 insights were extracted, analyzed, and synthesized to represent a realistic picture of the global COPD journey. The final insights report, with GAAPP as co-author, is set to be published in 2025.

Leveraging This Interactive and Adaptable Tool

The COPD Patient Care Map was created for the larger COPD community and we encourage you to adapt it to your specific needs. Therefore, the tool is available in an interactive PowerPoint format for easy use, alteration, and sharing with various stakeholders. It’s designed to be a flexible resource that can evolve alongside healthcare landscapes and cater to the unique needs of COPD communities worldwide.

Example uses:

  • To educate or provide refresher information to team members and others about the COPD patient experience across the care continuum.
  • To demonstrate in conversations with policymakers the most common barriers to optimal living that people with COPD experience where you live – and what change can benefit them most.
  • To allow decisionmakers to hear – through included videos – the firsthand experiences of people with COPD and their families.

The COPD Patient Care Map Localization Guide can help you in the customization process.

Thank you for helping to amplify the experiences and challenges of those living with COPD as well as those who care for them—together, we can create a better, more supportive world for those living with COPD.

Download the COPD Patient Map and Localization Guide!