To utilise real-time patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) to better understand the symptoms and concerns of patients attending an oncology outpatient clinic.
Patients were invited to complete a suite of PROMs and PREMs including the EQ-5D-5L, modified Edmonton Symptom Assessment System-Revised (ESAS-R) and the modified Supportive Care Needs Survey Short-Form (SCNS-SF34) on an iPad immediately before each appointment. Descriptive statistics were reported for the PROMs and PREMs. SCNS-SF34 domain Likert scores were summated and then standardised. Multiple linear regression was conducted to determine predictors of self-rated health (EQ-VAS score) with age, cancer type, tumour stage, treatment intent, current treatment, treatment modality and, cancer recurrence.
Of 146 patients approached, 100 patients (68.5%) participated (99 females, mean age 60.7 years). Primary cancer diagnoses were breast (67%), gynaecological (31%) and lung (2%) cancers. Patients speaking a language other than English were less likely to participate (73% vs 36%, p = 0.01). Median self-rated health (EQ-VAS score) among participants was 74/100 (IQR 32.5). No clinical or demographic factors were independently associated with self-rated health, p > 0.05. Only 8% of participants reported no problems on any dimension of the EQ-5D-5L. The top 3 symptom concerns (ESAS-R score ≥7) were tiredness (33.0%), sleep problems (24.5%) and drowsiness (21.2%). The SCNS-SF34 domains of greatest unmet need were psychological (median 45, IQR 42.1) and physical (median 40, IQR 46.3). Conversely, the domain of lowest unmet need was sexuality (median 16.7, IQR 33.3).
These data reflect the symptoms and concerns impacting on quality of life among real-world oncology patients in the immediate pre-COVID era. Findings will facilitate targeted supportive care interventions to those in greatest need. The project will be adapted for remote completion of PROMs and PREMs, to better meet patients’ needs in the COVID-19 world.