Symptom Burden in Chronically Ill Homebound Individuals

Objectives: To document the degree of symptom burden in an urban homebound population. Design: Cross-sectional survey. Setting: The Mount Sinai Visiting Doctors (MSVD) program. Participants: All individuals newly enrolled in the MSVD. Measurements: Edmonton Symptom Assessment Scale (ESAS), which consists of 10 visual analogue scales scored from 0 to 10; symptoms include pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being, shortness of breath, and other. Results: ESAS scores were completed for 318 participants. Most participants were aged 80 and older (68%) and female (75%); 36% were white, 22% black, and 32% Hispanic. Forty-three percent had Medicaid, and 32% lived alone. Ninety-one percent required assistance with one or more activities of daily living, 45% had a Karnofsky Performance Scale score between 0 and 40 (unable to care for self), and 43% reported severe burden on one or more symptoms. The most commonly reported symptoms were loss of appetite, lack of well-being, tiredness, and pain; the symptoms with the highest scores were depression, pain, appetite, and shortness of breath. Participants were more likely to have severe symptom burden if they self-reported their ESAS, had chronic obstructive pulmonary disease or diabetes mellitus with end organ damage, or had a Charlson Comorbidity Index greater than 3 and less likely to have severe burden if they had dementia. Conclusion: In chronically ill homebound adults, symptom burden is a serious problem that needs to be addressed alongside primary and specialty care needs.