Symptom Burden and Performance Status among Community-Dwelling Patients with Serious Illness

Predicting when burdensome symptoms will arise or worsen is important to preserving quality of life in patients with serious illness.

We explored the relationship between prevalence and severity of symptoms and underlying performance status.

We performed a retrospective cohort analysis of patients receiving community palliative care, investigating relationships between symptom burden and performance status. Patient data were obtained from the Carolinas Palliative Care Consortium Database, a central registry of community consultation data for research and quality improvement. We measured symptom prevalence and severity using the McCorkle Symptom Distress Scale and performance status using the Palliative Performance Scale.

We analyzed data of 4994 patients, most (90%) with noncancer, serious illnesses. Thirty percent had one or more moderate/severe symptoms. In addition to identifying the high prevalence of fatigue and pain, we found distinct groupings of symptoms with high burden associated with different levels of performance status. This includes high prevalence of fatigue, anorexia, and dyspnea in patients with high performance. Patients with low performance status, however, reported more pain, depression, and constipation.

Bothersome symptoms change as patients' performance status worsens. Using performance status as a common language, both medical professionals and informal caregivers can monitor impending changes in symptom burden. This should inform development of community-based delivery systems to detect and manage distress in patients with palliative care needs.