Aims: Determine whether systematic management of symptoms, using patient-reported outcomes (PROs), integrated into clinical practice in real-time, via centralised care coordination, coupled with information support to participants, improves health-related quality of life (HRQL) for patients with pancreatic (PC) and oesophagogastric (OGC) cancers.
Methods: Participants with PC and OGC were recruited from the Upper Gastrointestinal Cancer Registry (UGICR). Eligibility criteria: English speaking; diagnosed with PC or OGC within 12-months of recruitment (6-months for metastatic PC); diagnosed, managed or treated at one of the 12 participating health services in Victoria, Australia. To participate in the study individuals (or their carers) required access to the internet and a computer, tablet, or smart phone.
Participants were randomised to the PROpatient intervention or usual care over a 12-month period. The primary outcome was HRQL measured using the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Utility – Core 10 Dimensions (EORTC-QLU-C10D) from baseline to 6-months post-randomisation. Trial data was linked with clinical data (UGICR) and hospital administrative data sets.
Results: Between January 2021 and May 2023, 423 patients were eligible for the trial. Of these, 197 (response rate 47%) were recruited, with 99 in the control arm and 98 in the intervention arm. Of those alive at 6-months (169), 80% completed the trial assessments. At 6-months, the intervention arm demonstrated a significantly greater improvement from baseline in HRQL than the control arm (mean difference in change from baseline 0.088, 95% CI 0.023, 0.152).
Conclusion: This innovative trial highlights the importance of symptom monitoring and care coordination on quality of life for individuals with PC and OGC. These cancers have a high symptom burden and dismal prognosis. It is critical that individuals with these cancers receive the best possible symptomatic control, while the search continues for treatments to improve survival.