Engaging patients and families to create a feasible clinical trial integrating palliative and heart failure care: results of the ENABLE CHF-PC pilot clinical trial
BACKGROUND Patients with advanced chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF) may experience significant symptom distress. For development of palliative care programs that adequately address symptoms of patients with COPD or CHF, it is necessary to know severity of symptom distress and to gain insight in comorbidities and current provision of health care. Objective of the present cross-sectional observational study was to assess severity of symptoms, presence of comorbidities, and current provision of health care in outpatients with advanced COPD or CHF. METHODS A total of 105 outpatients with clinically stable but advanced COPD (Global initiative for chronic Obstructive Lung Disease [GOLD] stage III or IV) and 80 patients with advanced CHF (New York Heart Association [NYHA] class III or IV) were assessed for demographics, clinical characteristics, self-reported comorbidities, and severity of symptoms using visual analogue scales. In addition, current health care and symptom-related interventions have been assessed. RESULTS Comorbidities were reported by 96.3% of the CHF patients and 61.9% of the COPD patients. Patients suffered from multiple symptoms, like dyspnea, fatigue, muscle weakness, coughing, low mood, sleeplessness, and frequent micturition. For most symptoms, only the minority of patients had received symptom-related treatment. Involvement of allied health care professionals was low. The majority of COPD and CHF patients had received home adaptation and medical aids. CONCLUSIONS Patients with advanced COPD or CHF experience comorbidities and suffer from multiple symptoms, which are often under treated. Further development and implementation of palliative care programs, consisting of regular assessment of the patients' comorbidities and symptoms as well as the provision of patient-tailored interventions is needed.