Clinic combines ILD, palliative care to improve access for underserved patients
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Key takeaways:
- The Breathlessness Clinic provides palliative care for patients with advanced lung disease.
- The Breathlessness Clinic served a more diverse patient population than the ILD clinic.
BOSTON — A subspeciality clinic that combined pulmonary and palliative care improved access to these treatments for diverse and underserved populations, according to an abstract presented at the CHEST Annual Meeting.
The clinic also was effective in supporting patients as they completed advanced care planning, compared with a clinic for interstitial lung disease, Meghan Price, MD, internal medicine resident, Johns Hopkins Hospital, and colleagues wrote.
The clinic’s purpose
Along with high rates of mortality and morbidity, patients who have advanced lung disease experience profound symptom burdens including psychological and social distress that require symptom management and advance care planning, the researchers said.
Rebecca Anna Gersten, MD, assistant professor of medicine, established the Breathlessness Clinic (BC) in 2022 to provide both pulmonary and palliative care to treat patients with significant dyspnea and other symptoms due to their advanced lung disease.
The clinic aims to provide targeted management of symptoms in addition to improving access to palliative care for patients who may have encountered obstacles in accessing palliative care, the researchers said.
Price told Healio that her discussions with Gersten, who is her mentor and who has continued to build the clinic’s presence over the past 2 years, prompted the study.
“She has been a guide to me throughout residency when thinking about the clinical intersection of palliative care and pulmonary medicine, and her clinic has been the perfect example of this intersection,” Price said.
“She has very graciously allowed me to learn from the patients seen in the first 2 years of the BC and provided me the resources to ask specific research questions about this patient population,” Price continued.
Previously, Gersten also dedicated significant effort to collecting data on patients with ILD seen at the Johns Hopkins ILD Clinic, Price said, adding that these patients then formed the larger cohort of patients used for comparison with those seen in the BC.
“The primary question we asked that drove this study was: has the BC successfully started to bridge the gap in access to palliative care resources, particularly for traditionally underserved patients?” Price said.
Price noted a significant body of literature highlighting disparities in access to resources in palliative care (PC) across all areas of medicine and specifically in patients with ILD.
“Unfortunately, for racial/ethnic minority patient populations, there are historically disparate rates of utilization of PC resources, especially in the outpatient setting,” Price said.
Previous studies also have shown that these patients are much more likely to receive aggressive end-of-life care and die in the hospital, often in ICUs, without utilizing hospice resources, Price continued, with many drivers behind these disparities.
“At a patient-provider level, studies have cited disparities in communication and referral patterns, cultural differences, lack of trust, and misunderstanding symptoms as well as patient priorities,” Price said.
“At a systems level, there are financial and logistical barriers, particularly for un/underinsured patient populations,” she said. “These include lack of accessible specialty palliative care clinics and insufficient financial/insurance coverage for end-of-life care/hospice resources.”
As part of its coordinated and intentional recruitment effort, the BC screened all patients seen in the ILD Clinic, identified those underserved patients at risk for lower access to care, and encouraged them to enroll in the BC.
“The clinic sent out direct MyChart messages to invite them to enroll in the BC,” Price said. “If they did not respond to the MyChart message, one of the clinic coordinators called these patients until they were able to get in contact with them.”
The BC team also conducted presentations about the BC and its resources and mission for other subspecialty clinical teams in the Johns Hopkins system and then deferred the referral process to those individual providers, Price said.
Study results
The study included 71 patients (57.7% female) with ILD seen at the BC at least once between October 2022 and September 2023 as well as 564 patients (47.5% female) with ILD seen at the ILD Clinic between July 2010 and June 2019.
The BC group included 41 patients (57.7%) who were white, 19 (26.6%) who were Black/African American, eight (11.3%) who were Asian and three (4.2%) who were Hispanic American.
The group seen at the ILD Clinic included 463 patients (82.2%) who were white, 55 (9.8%) who were Black/African American, eight (1.4%) who were Asian and five (0.8%) who were unknown (P < .0001).
Also, 49.3% of the BC group and 4.2% of the ILD clinic group (P < .0001) had completed advanced directives, and 42% of the BC group and 5% of the ILD clinic group (P < .0001) had completed medical orders for life-sustaining treatment.
“Additionally, the rate of in-hospital deaths was 28% lower for patients seen in the BC than that of the larger ILD cohort,” Price said.
Almost 50% of patients in the BC died in home hospice programs, compared with 50% of patients in the larger ILD cohort who died in the hospital.
“In contrast, only 24% of patients seen in the BC died in the hospital,” Price said.
Conclusions
The researchers concluded that the BC effectively improved access to clinical resources and PC in addition to supporting patients in completing advance care planning.
“These findings highlight that the BC has been an effective resource and changed [end-of-life] care for both underserved patient populations and the larger population of patients with [advanced lung disease],” Price said.
Considering prior research indicating the impact of race and ethnicity on perceptions of PC experiences, access to PC resources and choices in advance care planning, the researchers continued, these findings also reveal why it is important for pulmonary clinics to integrate PC resources and providers.
“The most important aspects of establishing a program like this are support and advocacy,” Price said.
Price also said that Gersten and her partner, Annlise Calypso, CRNP, nurse practitioner with Johns Hopkins Medicine, “have been incredible advocates of this work” since the BC’s inception, adding that they “have dedicated the time, effort and care to allow it to grow over time.”
“Having champions like these two is critical to the success of programs such as the Breathlessness Clinic,” Price said. “Additionally, the pulmonary department at Johns Hopkins has been very supportive and provided the resources (time, space, financial) needed to make their vision a reality.”
For more information:
Meghan Price, MD, can be reached at mprice47@jhu.edu.
Perspective
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People living with ILD would benefit from PC approaches. ILD is an illness for which the main treatments are palliative. Despite this, there is little research examining what palliative approaches are useful, and for which people living with ILD.
This study shows promising results. The inferences could be improved by using methods to select an appropriate set of matching patients such as propensity scoring.
Integrating palliative care resources and specialists with pulmonary clinics is also a terrific idea. However, it is challenging to implement given limited palliative care specialists.
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