Patient-reported symptoms in daily oncology practice

Abstract

The number of patients diagnosed with cancer increases. At the same time cancer patients live longer due to earlier diagnosis and more effective therapies. During the course of their disease, patients experience many disease and/or treatmentrelated symptoms that impact health-related quality of life and daily functioning. Symptoms and their impact can be overlooked and/or underestimated by healthcare professionals. If symptoms remain under-recognized, physical, mental, existential and social functioning is affected and opportunities for diagnosis and management of symptoms may be missed. Patient-reported outcome measurement tools (PROMs) can be used to assess and monitor symptoms and symptom burden. The Utrecht Symptom Diary is a Dutch translation and modified version of the Edmonton Symptom Assessment System (ESAS) which is a worldwide frequently used and validated PROM in cancer patients. In 2003, the USD was developed for daily assessment and monitoring of symptoms of cancer and/or treatment-related physical and mental symptoms. It contains a total of 12 items – lack of appetite, nausea, abnormal stool, dysphagia, dry mouth, pain, sleeping problems, shortness of breath, fatigue, anxiety, depressed mood and overall well-being. Symptoms are scored on a zero-to-ten numeric rating scale (NRS), with higher values indicating increasing intensity. Moreover, patients are invited to add symptoms they experience and are not listed on the USD and are asked to prioritize symptoms which need attention in the patient-doctor-nurse conversation first from their personal perspective. Since 2007 treatment and disease specific modules of the USD have been developed. From 2015 the USD became part of the hospital electronic medical files. Over the last years the USD has been implemented in daily practice in other departments of the UMC Utrecht as well as in other (university)hospitals, general practices and hospices in the Netherlands. Moreover, use of the USD is recommended by the Netherlands Quality Framework for Palliative Care. This thesis describes the validation of the USD and patient-reported symptoms through the use of the USD in different patient groups and settings. The studies described in this thesis show the validity of the USD on content, criterion and construct level. In collaboration with the patient, the use of the USD gave insight into symptoms and their impact on quality of life. This insight is essential to provide personalized, supportive care during treatment with targeted therapies and immunotherapy in daily oncology practice.