Fragmented Care, Financial Strain, Gender Gaps Define Life With COPD

Patients with chronic obstructive pulmonary disease (COPD) continue to navigate fragmented, poorly coordinated care and often delay seeking help during exacerbations because they struggle to recognize when symptoms have become dangerous, according to a qualitative study presented at the European Respiratory Society Congress 2026, held September 5-9 in Barcelona, Spain.¹ A second poster presented at the meeting found that women with COPD shoulder a disproportionate share of the disease's financial and social burden, reporting higher rates of cost-related medication non-adherence and lower quality of life (QoL) than men.²

The posters’ findings make it clear the disease’s burden extends well beyond breathlessness and is shaped by care coordination gaps, stigma, and unequal access to resources.

Patients Describe a "Finite Energy Budget" and Disconnected Care

The CARINA study is a multicountry qualitative interview project that set out to capture the perspectives of people living with COPD directly and identify the barriers to care they face.¹ Researchers conducted remote, semistructured interviews in participants' native languages between September 2023 and July 2025, ultimately analyzing data from 60 adults across Australia, China, the Netherlands, the United Kingdom, and the United States.

Eligible participants were 40 years or older, had a physician diagnosis of COPD, were on dual or triple inhaled therapy, and had experienced at least 2 moderate or 1 severe exacerbation in the prior 12 months. The majority of patients were 70 years or older (65.0%), male (66.7%), on triple inhaled therapy (70.0%), and former smokers (7.71%).

Analysis of the interviews surfaced 4 overarching themes that held consistent across all 5 countries and health care systems.

• Persistent daily burden: participants described breathlessness, cough, and mucus as a constant, fluctuating presence that forced them to manage a “finite energy budget,” pacing themselves or skipping activities to conserve strength. One 62-year-old male participant from China put it bluntly: “When you can't breathe, how could it not be unbearable? … All you can think about is trying to catch your breath.”
• Barriers to receiving optimal care: participants described fragmented care delivered by multiple, poorly coordinated clinicians; feeling judged, including for smoking history; being excluded from treatment decisions with minimal shared decision-making; and receiving little to no proactive support for lifestyle-based management. A 68-year-old man from the United Kingdom described the experience with temporary or rotating clinicians as feeling like “just a number on the screen.”
• Uncertainty and delayed care-seeking during exacerbations: participants had difficulty recognizing when an exacerbation was occurring and tended to rely on personal cues rather than formal clinical guidance, often downplaying symptoms and delaying professional care even during severe episodes. A 69-year-old man from the United States said it took him 15 years to learn to distinguish a bad day from a genuine downturn.
• A cautious but pragmatic openness to future add-on treatments: participants said they hoped for meaningful improvement in breathing and daily functioning rather than a cure, but their openness was tempered by concerns about safety, adverse effects, and interactions with existing therapy, as well as past treatment disappointments.

The study's authors concluded that the findings point to a need to strengthen continuity of care and patient-centered communication and that clinicians should prioritize coordination among the multiple providers involved in a patient's care while more actively involving patients in shared treatment decisions. They also called for patients to be proactively educated on how to recognize an exacerbation and when to seek help, supported by personalized self-management plans and structured follow-up after recovery.

“These cross-country findings highlight systemic gaps and the need to embed patient perspectives into care and treatment design to improve outcomes,” the researchers concluded.

The study was funded by AstraZeneca.

Women With COPD Report Greater Financial Strain and Lower QOL Than Men

A separate poster, drawing on data from the National Institutes of Health's All of Us Research Program, found that women with COPD face measurably greater financial and social barriers to care than men, along with worse health-related QOL (HRQoL) across nearly every domain measured.²

“While financial and social barriers can influence a patient’s ability to access care and adhere to treatment, less is known about whether these challenges differ between females and males living with COPD,” Radmila Choate, PhD, associate professor of research in the Department of Epidemiology and Environmental Health and an affiliated faculty member of the Sanders-Brown Center on Aging at the University of Kentucky, explained during a presentation of the poster.

Choate and her fellow researchers from the University of Kentucky analyzed data from 12,505 adults with an electronic health record–documented COPD diagnosis, 58% of whom were female. Financial hardship was assessed using items from the Healthcare Access and Utilization Survey, and HRQoL was measured using items from the Overall Health Survey; comparisons between sexes used chi-square tests for categorical variables and t tests for continuous variables, with all reported differences reaching statistical significance (P < .0001).

At the time of the survey, the mean age of the female participants was 62.5 years compared with 66.3 years for the male participants. Women were diagnosed at a younger mean age (58.6 vs 62.0). More than half (54.2%) of women had an annual income of less than $50,000 compared with 43.6% of men, and a slightly higher proportion of women reported high school was their highest form of education (29.2% vs 25.4%).

Women were substantially more likely than men to report worrying about their ability to pay medical bills in the event of illness or an accident (48% vs 35%). They also reported higher rates of cost-related medication non-adherence, including delaying prescription fills (18% vs 10%) and reducing or skipping medications outright to save money (13% vs 8%). Beyond medication costs, women more frequently cited high out-of-pocket costs, transportation barriers, childcare responsibilities, and an inability to take time off work as reasons for delaying or forgoing care.

The gap extended to QOL. Across every domain measured (general health, overall QOL, physical health, mental health, social satisfaction, and social roles) women reported lower rates of excellent or very good status than men. The difference was most pronounced for mental health, where 44.0% of women reported excellent or very good status compared with 53.0% of men.

Choate and her colleagues concluded that sex-specific barriers may help explain differences in treatment access, medication adherence, and overall well-being among people with COPD.

“Patient-reported financial and social unmet needs are more pronounced among females with COPD, with corresponding differences in HRQoL,” they noted in the abstract. “These findings highlight the importance of incorporating patient experiences into COPD care and research to address sex specific barriers to accessing and adhering to treatment.”

References

1. Harms E, Draffan L, Stuifzand J. Barriers in current and future care in people with COPD: CARINA study. Presented at: ERS Congress 2026; September 5-9, 2026; Barcelona, Spain. Poster ID 6172.

2. Choate R, Karnik K, McQuerry K, Mannino D. Sex differences in financial and social unmet needs and quality of life in COPD. Presented at: ERS Congress 2026; September 5-9, 2026; Barcelona, Spain. Poster ID 4929.