Impact of a specialized ambulatory clinic on refractory breathlessness in subjects with advanced copd

BACKGROUND: Severe exertional dyspnea is a commonly reported symptom in patients with COPD, especially in the advanced stages. Our objective was to assess the preliminary impact of comprehensive, individualized management provided by a specialized tertiary center clinic on exertional dyspnea and patient-centered outcomes in patients with advanced COPD. METHODS: This retrospective analysis included 45 subjects with COPD who were evaluated in a newly established dyspnea clinic over 3 years. Those with severe exertional dyspnea (Medical Research Council dyspnea score of >4/5), despite optimal disease-targeted therapy were eligible for referral. We used the revised Edmonton Symptom Assessment System (ESAS-r) to assess symptoms. Responders were defined as those whose change from baseline to 2-months met the minimum clinically important difference of <-1 in ESAS-r score for shortness of breath. RESULTS: Subjects (mean ± SD age 70 ± 7 years) had an average FEV1 of 36 ± 18% predicted and a Medical Research Council dyspnea score of 4.7 ± 0.4. Responses to the intervention were variable and mean change in the ESAS-r score for shortness of breath in the total group was-0.32 ± 3.39, P = .53. Forty-seven percent of the subjects were identified as responders, and 42, 40, 40, and 33% met the minimum clinically important difference for improvement in ESAS-r scores for tiredness, anxiety, well-being, and depression, respectively. Responders had fewer emergency department annual visits in the 2 years after their first clinic visit compared with nonresponders (mean ± SD, 1.38 ± 1.63 vs 4.45 ± 5.52, P = .034). CONCLUSIONS: Although the impact of our specialized advanced dyspnea clinic was variable, as evaluated by the ESAS-r, it provided measurable additional clinically important benefit to almost half of the subjects with advanced COPD and severe refractory dyspnea.