Women with COPD experience stigma, barriers to medication, resources

Key takeaways:

• Women with COPD reported that it was difficult to access medications and resources.
• This patient population did not use/understand palliative care.

WASHINGTON — Among 30 women with advanced COPD, many reported barriers to care and none received palliative care, according to an abstract presented at the American Thoracic Society International Conference.

“Evidence suggests that [palliative care (PC)] should be started earlier in the disease process and is supported by the American Thoracic Society, the Global initiative for Chronic Obstructive Lung Disease, and the American College of Chest Physicians,” Jessica Madiraca, MSN, RN, CCRN-K, of the Medical University of South Carolina, told Healio. “This study provides evidence that women do have unmet care needs, high symptom burden and disease uncertainty. Women with COPD should have the opportunity to have the supportive care that PC provides to help manage symptoms, provide education of disease progression and emotional support.”

In a prospective, single-arm, multimethod study, Madiraca and colleagues analyzed online survey responses from 30 women with COPD to gain a better understanding of their unmet care needs, barriers to care and awareness of PC. Half of these women also completed an interview.

Researchers had the women fill out three different assessments to capture various outcomes, such as respiratory-related quality of life and symptom burden. These assessments included the St. George’s Respiratory Question for COPD, the COPD Assessment Test and Patient Reported Outcomes Measurement Information System-29 (PROMIS-29).

Based on the women’s responses, Madiraca told Healio that they received no education on COPD disease progression, symptoms and treatment options at diagnosis. She added that these women also reported a lack of awareness on the severity of the disease.

“Women experienced numerous emotions when receiving their COPD diagnosis such as denial, depression and fear of dying,” Madiraca told Healio.

According to survey results, women with COPD frequently reported difficultly accessing medications/oxygen, pulmonary rehabilitation and support groups. They also commonly felt embarrassed because of their disease and angry because of stigma.

“Women want additional knowledge about COPD provided to them,” Madiraca said. “They lean on support groups to obtain information about the disease. Many women interviewed did advocacy work through support groups and were actively involved in COPD organizations.

“Additionally, women with advanced COPD have high symptom burden that has an impact on quality of life and ability to complete activities of daily living,” Madiraca added. “One example provided by these women was the importance of online delivery (ie, groceries) due to symptoms/fear impeding their ability to go to the grocery store.”

When asked if they were seeing a pulmonologist, 46.7% of women interviewed said they were not, and this was due to various reasons, including retirement, distance to the office or lack of a referral, according to Madiraca.

PC was not reported by any of the women in the total cohort, and among the 15 women interviewed, many said that they never heard of this type of care and thought it was the same as end-of-life care, Madiraca told Healio.

“Future studies will focus on inclusion of a more diverse population since over 90% of participants identified as white, non-Hispanic race,” Madiraca told Healio. “Further exploration of health care providers and/or pulmonologist [are needed] to determine barriers that might exist to referring men/women to PC services earlier in the disease process.”

For more information:

Jessica Madiraca, MSN, RN, CCRN-K, can be reached at madiraca@musc.edu.