Patients Perspective of Timeliness and Usefulness of an Outpatient Supportive Care Referral at a Comprehensive Cancer Center

Abstract Context Current guidelines recommend early referral to palliative care for patients with advanced cancer; however, no studies have examined the optimal timing of referral from the patients' perspective. Objectives To examine patients' perceptions of timeliness of referral and its association with survival among patients with advanced cancer referred to an outpatient supportive care (SC) clinic. Methods This cross-sectional prospective study in an SC clinic at a comprehensive cancer center included patients 18 years or older with locally advanced, recurrent, or metastatic cancer. Patients were asked to complete an anonymous survey regarding the timeliness and perceived usefulness of SC referral within four weeks of their first SC consultation. Results Of 253 eligible patients, 209 (83%) enrolled in the study and 200 completed the survey. Median survival was 10.3 months. Most patients (72%) perceived that referral occurred "just in time," whereas 21% felt it was "late" and 7% "early." A majority (83%) found the referral useful, and 88% would recommend it to other cancer patients. The perception of being referred early was associated with lower reported levels of pain ( P =.043), fatigue ( P =.004), drowsiness ( P =.005), appetite loss ( P =.041), poor well-being ( P =.041), and lower physical ( P =.001) and overall symptom distress ( P =.001). No other associations were found between perceived timeliness and usefulness and patients' baseline characteristics. Conclusions Most patients with a median survival of 10 months perceived that SC referral was timely and useful. Patient care needs rather than the timing of advanced cancer diagnosis drove this perception of referral timing. Lower symptom burden was associated with the perception of being referred to early.