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 aged 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% felt ''early.'' A majority (83%) found the referral useful, and 88% would recommend it to other patients with cancer. The perception of being referred early was associated with lower reported levels of pain (P ¼ 0.043), fatigue (P ¼ 0.004), drowsiness (P ¼ 0.005), appetite loss (P ¼ 0.041), poor well-being (P ¼ 0.041), and lower physical (P ¼ 0.001) and overall symptom distress (P ¼ 0.001). No other associations were found between perceived timeliness and usefulness and patients' baseline characteristics.Conclusion. 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.

Cancer palliative care referral: patients’ and family caregivers’ perspectives – a systematic review

“…Of the 14 studies, 10 were surveys21–30 and 4 were qualitative studies 31–34. Eleven studies were from North America (nine from the USA and two from Canada) and three from Asia (one from Korea and two from Japan).…”

“…Four studies included patients with cancer and their family members21 28 29 33 and one in end-stage liver diseases 34. Only one survey30 in the USA assessed the patients’ perceptions of the timeliness of referral in an outpatient supportive care clinic. Five surveys were multicentred studies, two in Japan, two in the USA and one in Korea.…”

“…Furthermore, families thought that delayed referral contributed to the lack of preparedness of patients and families towards the declining health condition of the patient 26 36. Referral at cancer diagnosis or first dose of chemotherapy was perceived as early or too early 23 24 26 30 31. Perception of timing was not associated with age, ethnicity, marital status, admitting diagnosis, site of care, the degree to which decisions were shared or referring physician specialty,21 24 except in,31 where men were referred late compared with women with no apparent reason stated.…”

“…Patients with cancer and their families felt that oncologists should initiate a palliative care referral for uncontrolled physical symptoms, anxiety, depression, emotional distress and the decline in the patient performance status 30 33 34. Bereaved family caregivers from the USA experienced countertransference of their loved one’s pain and suffering, making them distressed, which enabled recognition of the need for early hospice enrolment 27…”

An exercise oncology clinical pathway: Screening and referral for personalized interventions

“…The survivorship care team is ideally positioned to use the screening algorithm throughout cancer care and to improve access to supportive care services, including exercise. Implementation strategies to integrate the screening tool into oncology practice include leveraging patient navigation frameworks for screening and exercise referrals, 70 using patient‐reported outcomes measures to identify symptom changes that warrant referrals, 71 and using prospective supportive care services from the point of diagnosis 23,72 . Colocated services with same‐day appointments for onsite supportive care interventions promote earlier engagement and improve patient outcomes and satisfaction 73 …”