A Retrospective, Descriptive Study of Dyspnea Management in a Multidisciplinary Interstitial Lung Disease Clinic

Background: Fibrotic interstitial lung diseases (F-ILDs) have a high symptom burden with progressive dyspnea as a primary feature. Breathlessness is underrecognized and undertreated primarily due to lack of consensus on how to best measure and manage it. Several nonpharmacologic and pharmacologic strategies are published in the literature, however there is a paucity of real-world data describing their systematic implementation. Objectives: We describe the types of breathlessness interventions and timing of implementation in our multidisciplinary collaborative care (MDC) ILD clinic and the impact of our approach on dyspnea trajectory and acute care use in ILD. Methods: A retrospective, observational study of deceased ILD patients seen in our clinic (2012-2018) was conducted. Patients were grouped by baseline medical research council (MRC) grade and dyspnea interventions from clinic enrolment until death were examined. Healthcare usage in the last 6 months of life was collected through Alberta’s administrative database. Results: Eighty-one deceased ILD patients were identified. Self management advice was provided to 100% of patients. Pulmonary rehabilitation (PR) and home care (HC) referrals were made in 40% and 57% of patients, respectively. Eighty percent were treated with oxygen and 53% with opioids during the study. MDC-initiated referral to PR and HC, oxygen and opioid prescriptions were provided a median of 13, 9, 11, and 4 months prior to death, respectively. Stepwise implementation of interventions was observed more commonly in MRC 1-2 and concurrent implementation in MRC 4-5. Conclusions: Our clinic’s approach allows early and systematic dyspnea management.