ABSTRACT
CONTEXT: While praised for inducing durable anti-tumour responses, immune checkpoint inhibitors (ICI) also cause immune-related adverse events (irAEs) that can vary in severity and affect health-related quality of life (HRQL). OBJECTIVES: This study was performed to provide insight into the course of symptoms and the influence of irAEs on HRQL measured with the treatment-specific Utrecht Symptom Diary Immunotherapy (USD-I). METHODS: In this observational cohort study, melanoma or non-small lung cancer (NSCLC) patients treated with PD(L)1-inhibitors between February 2016 and December 2018 were included. Data on symptoms, wellbeing and influence of side effects on HRQL were obtained using the patient-scored, treatment-specific USD-I, which was completed as part of routine care. Patients scored symptom intensity on a 0-10 numeric rating scale (NRS); NRS≥3 considered clinically relevant. RESULTS: A total of 162 melanoma (55%) or NSCLC (45%) patients completed 1493 USDs (median seven per patient). Most common patient-reported clinically relevant symptoms were: inactivity, fatigue, pain, cough and sleeping problems. Symptom prevalence decreased during treatment. Patients generally reported a low influence of side effects on HRQL. A higher number of clinically relevant symptoms at a certain time point correlated with poorer wellbeing. CONCLUSIONS: These data illustrate that ICI-treatment is generally well tolerated. However, especially the number of clinically relevant symptoms can impact patients wellbeing. Systematic use of an ICI-tailored PROM could create a window to discuss symptoms in a structured way which may promote personalized care during treatment.