There are approximately 16 million people living with Chronic Obstructive Pulmonary Disease (COPD) in the United States, with several million more projected to be living undiagnosed. The underdiagnosis or misdiagnosis of COPD is a serious issue, increasing the urgency for open patient-provider communication so that a plan of action can be created for long-term lung health.
COPD signs and symptoms include shortness of breath, a frequent cough (with or without mucus), wheezing and chest tightness. The earlier symptoms are recognized by a patient, the earlier it can be brought to a doctor’s attention and the quicker patients and providers can work together to manage the disease.
Even though it may be easy to talk about the importance of patient-provider communication, putting that communication into practice can be difficult. Unfortunately, 2019-2020 CHEST and COPD Foundation survey results, sponsored by AstraZeneca, suggest that there might be gaps in patient-provider dialogue when it comes to managing COPD. The survey reported that, while 77% of patients living with COPD recall their doctor asking them to report any changes in symptoms, only 29% of patients reported symptom changes at the onset. If patients are not proactively reporting symptom changes, and their doctors are not always asking the appropriate questions, then there can be large gaps in disease management that put patients at risk for future flare-ups.
From the patient perspective, it is not always easy to be proactive about reaching out to a health care provider and communicating concerns or changes in symptoms. The survey discovered that, among those who wait to check in with their doctor about a problem, about 60% reported thinking their symptoms were not severe enough to bring up.
"Conducting this survey was an essential step in helping us to close the gaps in communication between patients and providers,” says Kristen Willard, Executive Vice President of Public and Professional Education, COPD Foundation. “We understand that patients may be afraid to speak up about their symptoms. We encourage people living with COPD to be proactive in their care through the Foundation’s real-world projects like the CIRCLES program, which provides information that educates, engages, and empowers patients to become advocates for their health. Also, resources such as our My COPD Action Plan and the COPD Pocket Consultant Guide App can support people with COPD by providing them with tools for communicating with health care teams and managing their overall lung health journey.”
It is important for patients to know that no symptom is too small to be mentioned to a doctor and could be a crucial piece of the puzzle that helps better manage their COPD. However, survey results found that only 28% of patients recall talking to their doctors about the risk of future COPD-related events.
Deb Brown, Chief Mission Officer at the American Lung Association explained, “We’ve heard from patients that they don’t always understand treatment goals and the importance of being assertive in discussing new or lingering symptoms. This suggests that there is a need not only for proactive conversations about how recommended treatments help achieve optimal lung health, but also general education about what long-term management looks like, how to prevent future COPD flare-ups, and agreement of treatment plans and goals."
From the provider’s perspective, it is all about making the time they have with patients count. While providers cannot control when or how often their patients come to see them, it is important to continue to provide a safe and open space for honest conversations about their experiences. Despite these efforts, the survey reported that only about a fifth of patients contact their physicians at the outset of symptoms, despite knowing that this is an important inflection point in their COPD care.
Robert Musacchio, PhD, Chief Executive Officer and Executive Vice President of the American College of CHEST Physicians (CHEST) provided insight from the perspective of CHEST’s clinician members saying, “Physicians are eager to learn as much information as possible about a patient and their life circumstances in order to tailor treatment options to each individual. Today’s practice setting isn’t always conducive to establishing the deep trust that encourages patients to share their personal barriers, as we found in a multicity listening tour conducted through the CHEST Foundation. CHEST is committed to supporting our clinician members in the practice of empathetic medicine through training programs and tools that enable the formation of a true partnership with the patient at the center of their own care team. We see this work as essential to supporting patients facing chronic diseases like COPD.”
If open conversations are still not occurring, providers can support patients with tools to facilitate dialogue around disease management. 42% of physicians reported that they provide their patients with a written action plan, while only 14% of patients reported receiving an action plan from their physician – indicating that more can still be done to increase the use of available resources.
In summary, while we understand there may be gaps in patient and provider communications surrounding COPD, there are actionable ways that providers and patients can come together to better manage this disease:
- Patients should recognize the signs and symptoms of COPD so that early and proactive dialogue with healthcare providers can take place, subsequently preventing hospital visits and life-threatening exacerbations.
- It is crucial to improve the quality and frequency of conversations between those living with COPD and their physicians to catch flare-up warning signs early on and better manage COPD. For a successful patient-provider relationship, both sides must be willing and able to listen and speak up when needed.
- Patients and providers can utilize educational tools and tracking resources to improve dialogue and hold each other accountable to ultimately avoid future flare-ups or worsening of disease.