Care gaps and unaddressed palliative needs as sources of distress in advanced heart failure

Background: Heart failure (HF) affects approximately 5.8 million Americans. Characterized by significant disease management needs and high healthcare utilization, HF presents a prime target for care coordination, such as that of community-based palliative care (PC). Quality monitoring is vital to establishing general care effectiveness and uptake evidence-based practices, which are poorly understood in PC. The Carolinas Consortium maintains the US's largest multi-site community-based PC quality monitoring database; here, we highlight its role in HF. Methods: The Carolinas Consortium established a standardized, point-of-care data collection system that accumulates clinician, patient, and proxy reported data from community-based PC sites. We analyzed initial PC visit data for all HF patients. Variables assessed include demographics, symptoms, quality-of-life, and functioning. Functional status was measured using the Palliative Performance Scale (PPS); QOL and symptoms were scored on 4-point scales. Results: Of 5,959 patients, 13.9% had a diagnosis of HF. Fifty-nine percent were female, 91% Caucasian, and median age was 85 years [range: 52-101]. At referral, 60% of patients had significant functional limitations (PPS <50%), requiring assistance with self-care. Forty-one percent reported “poor” QOL. Symptoms most frequently reported as “moderate” or “severe” were: fatigue (53%), anorexia (28%), and dyspnea (25%). Conclusions: HF patients experience functional impairment and symptom burden leading to poor QOL. PC may have a role in improving advanced HF care and patient QOL; however, patients are referred for PC late in the disease trajectory. This type of information is critical for service and workforce planning among the growing number of community-based PC programs.