People with COPD want more from their doctors: Here’s what they say

Debilitating. Frustrating. Devastating.

When asked to describe their condition in one word, COPD patients’ choice of words reveals struggle, fear, misery, and helplessness in Health Union’s COPD In America 2018 survey.

This year’s survey results, and the conversations that occur within the COPD.net community, showcase that being able to share emotions, struggles, and worries is particularly important to people with COPD. The person they want to connect with the most? Their doctor.

The COPD In America 2018 survey (n=2,067) sought to understand more about a variety of issues that people with COPD live with on a daily basis, like quality of life and relationships, treatment awareness and usage, and HCP engagement. The survey results found that 96% of respondents regularly see an HCP for their COPD and cite a positive relationship with the doctor; however, many wish their HCP would understand the emotional impact of the condition. In particular, many respondents wished their doctor understood more about their fear of COPD worsening.

In addition to their worries and struggles, COPD patients wish their HCP understood the difficulties and frustrations they face when trying to “live a normal life,” or the attempt to prepare for an “unknown” future. Some patients wanted their doctor to know more about…

“How difficult it is to get around when unable to breathe, particularly when leaving home for appointments and how anxious it makes me”

“How scary it is worrying about my future. The cost of meds are outrageous, and I worry about not being able to afford the meds and care in the future.”

Unfortunately, less than half of COPD patients surveyed felt their HCP communicated effectively about their condition or discussed quality of life on their current treatment plan.*

“I feel my pulmonologist could do more with my treatment,” wrote one respondent. “My next appointment I plan to inquire about new meds. That might help me. He seems very reluctant to try new meds.”

Only 22%* of patients feel that their COPD is under control with their current treatment plan. Those patients who felt they had higher levels of control were currently diagnosed with stage 1 or 2 and had a better relationship with their HCP on almost all aspects measured. This indicates that those with more progressed levels of COPD feel their condition is less well-controlled with their current treatment plan, which could cause the relationship with their HCP to be negatively impacted.

Results from COPD In America 2018 reveal that a gap may exist between doctor/patient communication, particularly as it relates to a COPD patient’s satisfaction with their treatment plan. A true dialogue must exist between HCPs and patients regarding what matters most to patients and their expectations for their own quality of life, so that patients’ values and preferences are incorporated into treatment decisions.

To learn more about life with COPD and additional results from COPD In America 2018, visit the community at COPD.net.

*Top 2 box on a 7-point scale.