From Bench to Bedside: Clinical practice examples
Example 7: Cancer Center Upper Austria (Tumorzentrum Oberösterreich), Austria – hospital network
Background
The Cancer Center Upper Austria, Austria, is a network of 13 hospitals in a region with 1.5 million inhabitants (www.tumorzentrum.at). Around 10,000 people in the region are newly diagnosed with cancer every year. Tumor characteristics, treatment and long-term outcome are recorded in a cross-hospital database. Preparations for the electronic recording of patient-reported outcome measures (ePROM) started in 2021, and in March 2024 the go-live was launched at one department in a hospital (www.onkip.at). It is planned to link the data from the tumor data and the ePROMs.
Dr. Weltermann is medical director of the Tumor Center Upper Austria. He was the initiator and head of the project to record ePROMs in the hospital network.
Workflow: The ePRO is completed one day before the hospital visit (at home or on the move) to provide the care team with symptom, function, and quality-of-life information before the consultation. Data are transferred to the hospital information system and available to clinicians immediately. Questions are tailored to disease, treatment, as well as time since treatment start and focus mainly on symptoms and functioning for routine care. Quality-of-life questions are asked less frequently.
Patients can view their answers in their portal (www.onkip.at) and receive tailored self-management advice (e.g., for dry mouth after chemotherapy), supporting patient empowerment.
Target groups: ePRO is to be offered to all patients in the Tumor Center Upper Austria, a network of 13 hospitals, independently of diagnosis and treatment setting.
The question set builds on the EORTLQ-C30 and adds clinically relevant symptom items from the EORTC item library. Disease-specific items are defined by expert teams, alongside a core set used for all patients.
Since Go-live (Q1/2024), we have been testing the set for patients after allogeneic stem cell transplantation. Further sets are in development.
PROM software: We use the CHES software from ESD (Evaluation Software Development) for our application.
Individual set-up: The attending physician sets up the disease-specific portal and planned treatment pathway, and updates it as needed so CHES can automatically deliver the correct questionnaires at predefined intervals (e.g., follow-up: every 3 months in years 1–2 post-treatment, every 6 months in years 2–5, then annually)..
No additional staff: It was determined that no additional staff is required to use the system, and materials were designed so patients can complete assessments independently or with relatives’ help.
Data storage and access: Clinicians access responses directly via the hospital information system (patient-specific link), with results shown in a user-friendly visual format. PRO data initially belongs to the patient; the physician reviews and confirms it with the patient, after which it becomes part of the medical record. Data are stored on a hospital server.
Before activation in a department, a 23-point checklist must be completed, including mandatory staff training across all involved professional groups. Profession-specific e-learning materials were developed, and PRO interpretation is covered in the training.
The data can be discussed with the patient by physicians, nursing experts and psychologists. Only the doctor is authorized to release the data so that it becomes part of the medical history.
- Patient empowerment: The portal provides information on what patients can do themselves to improve or prevent complaints.
- Clinical follow-up: ePRO results are discussed with the patient and appropriate measures are initiated.
Patients can view their responses in the portal, which also provides information to help prevent or reduce symptoms. The system is not a call-back/recall service: patients are instructed to contact their GP, the hospital, or emergency services directly if they need rapid help.
No additional workload: Across all professional groups, the main barrier is integrating ePROs into daily practice so they do not add time, but ideally reduce workload. This needs to be explicitly addressed and practised in training; if staff experience ePROs as extra work, the system will not be accepted.
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