Symptoms and disease severity in lung transplant candidates co-managed with palliative care

BACKGROUND: Lung transplant (LTx) candidates experience significant respiratory symptoms often necessitating palliative care (PC) support. We aimed to describe symptoms experienced by interstitial lung disease (ILD) and chronic obstructive pulmonary disease (COPD) LTx candidates referred for PC using the Edmonton Symptom Assessment System (ESAS) and to assess the change in ESAS in relation to pre-LTx exercise capacity, oxygen requirements, and respiratory exacerbations. Understanding symptom trajectory of these two patient groups will help inform PC management. METHODS: Single centre, retrospective cohort of 102 ILD and 24 COPD LTx candidates who were assessed in the Toronto Transplant PC Clinic (TPCC) from 2014-2017. Chi-square and t-tests were used to compare clinical characteristics, physiological parameters, and ESAS scores. RESULTS: The most common symptom in ILD and COPD patients was dyspnea (median score of 8, cough 7, fatigue 6). ILD patients reported higher cough scores (7 vs. 4, P<0.001). There was no association between the change in ESAS domains and six-minute walk distance (6MWD), oxygen requirements, or respiratory exacerbations, despite increased oxygen requirements and a greater decline in 6MWD in ILD compared to COPD pre-LTx (-47 vs. -8 meters, P=0.01). ILD candidates who were delisted/died compared to those transplanted, experienced worse depression (median ESAS; 4.5 vs. 1), anxiety (5.5 vs. 2) and dyspnea (9.5 vs. 8); P<0.05. CONCLUSIONS: ILD patients had similar symptoms as COPD patients, despite increased oxygen requirements and decreasing 6MWD pre-LTx. This study highlights the importance of symptom management of LTx candidates co-managed with PC, independent of traditional measures of disease severity.