Registries Highlight the Needs of Patients With COPD in Primary Care

US patients with chronic obstructive pulmonary disease (COPD) managed in primary care settings have high exacerbations, symptoms, and treatment burdens, according to an analysis of electronic health record data and patient-reported information/outcomes.

In the United States, most patients with chronic obstructive pulmonary disease (COPD) are managed by their primary care physician or general internist, who may not be up-to-date with the latest clinical guidelines. A recent study examined the demographics and clinical characteristics of individuals from 2 patient registries.

The researchers, writing in The Annals of Family Medicine, noted that describing the patient population is an important first step in improving primary care for patients with COPD.

Data came from 2 registries: the COPD Optimum Patient Care DARTNet Research Database (COPD-RD) and the Advancing the Patient Experience in COPD (APEX-COPD) registry.

The APEX-COPD registry is an observational primary care initiative that retrospectively and prospectively collects electronic health record (EHR) data to describe patient demographics, compare COPD treatments, and to understand predictors of response to these treatments. The APEX-COPD is derived from the COPD-RD, which is a much larger data set. The APEX-COPD differs from the COPD-RD in that it links EHR data to patient-reported information/outcomes (PRIO) collected from patients during their primary care appointments.

This observational registry study used EHR patient data from the COPD-RD and the APEX-COPD registries. PRIO data from the APEX-RD came from 5 primary health care organizations in Texas, Ohio, Colorado, New York, and North Carolina. Data was collected from June 2019 through November 2020.

The study included 17,192 patients from the COPD-RD registry and 1354 patients from the APEX-COPD registry. All patients were aged 35 years or older at the time of their COPD diagnosis. Patient demographics were as follows: 56% female; 81% aged 55-84 years; 64% White; 80% current or ex-smokers; 69% overweight or obese.

Clinical characteristic data from the COPD-RD showed that 99% of patients had 1 comorbid condition, and 87% of patients had 3 or more comorbidities. The most common comorbidities were hypertension (73%), type 2 diabetes (45%), depression (42%), and osteoarthritis (41%).

In the last 12 months, 3% of patients from the COPD-RD were untreated, 9% were on short-acting bronchodilator monotherapy, and 4% were on inhaled corticosteroid monotherapy. The most prescribed controller therapies were inhaled corticosteroid with long-acting b2-agonist (30%) and inhaled corticosteroid with a long-acting muscarinic antagonist (27%).

In the last 12 months, 38% of patients from the COPD-RD experienced 1 or more exacerbations. The APEX-COPD registry found that 50% patients experienced 1 or more exacerbations in last 12 months. Since most patients were on maintenance therapy, the flare-ups may indicate inadequate treatment or poor compliance with medication, the researchers said.

PRIO data from the APEX-COPD registry showed that 82% of patients reported a medium to very high COPD Assessment Test score, which assesses COPD’s impact on quality of life. A breathlessness score of 2 or more on the modified Medical Research Council (mMRC) dyspnea scale was reported by 45% of APEX-COPD patients.

Limitations of this study include the lower internal validity of registry data than prospective data in randomized controlled trials. Registry data also lacks information on treatment adherence, inhaler technique, and peak inspiratory flow.

“In conclusion, our findings highlight the high exacerbation, treatment, and comorbidity burdens experienced by US patients diagnosed with COPD and managed in primary care, and the need for more real-life effectiveness trials to better support decision making at the primary care level,” the researchers wrote.


Pace WD, Brandt E, Carter VA, et al. COPD population in US primary care: data from the Optimum Patient Care DARTNet Research Database and the Advancing the Patient Experience in COPD registry. Ann Fam Med. 2022;20(4):319-327. doi:

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