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Updated: Jul 29, 2025
Establishment of a Primary Culture of Patient-derived Soft Tissue Sarcoma
Published on: April 11, 2018
Exploring the Potential of Electronic Patient-Reported Outcome Measures to Inform and Assess Care in Sarcoma Centers:
Franziska Geese1, Sabine Kaufmann, Mayuri Sivanathan
1Author affiliations: Academic-Practice-Partnership, School of Health Professions, Bern University of Applied Sciences (Ms Geese and Dr Schmitt); Department of Nursing, Insel Gruppe (Ms Geese and Dr Schmitt), and University Cancer Centre, University Hospital Bern (Ms Kaufmann and Dr Klenke); Bone and Soft Tissue Tumor Centre, University Hospital Basel (Ms Sivanathan and Dr Krieg); University Children's Hospital Basel (Ms Sivanathan and Dr Krieg); Department of Musculoskeletal System, University Hospital Zurich (Dr Müller); and Zurich Sarcoma Centre, Unit for Clinical and Applied Research, Balgrist University Hospital (Ms Sairanen), Switzerland.
Background:
Electronic patient-reported outcome measures (ePROMs) are useful tools to assess care needs of patients diagnosed with cancer and to monitor their symptoms along the illness trajectory. Studies regarding the application of ePROMs by advanced practice nurses (APNs) specialized in sarcoma care and the use of such electronic measures for care planning and assessing quality of care are lacking.
Objective:
To explore the potential of ePROMs in clinical practice for assessing the patient's quality of life, physical functionality, needs, and fear of progression, as well as distress and the quality of care in sarcoma centers.
Methods:
A multicenter longitudinal pilot study design was chosen. Three sarcoma centers with and without APN service located in Switzerland were included. The instruments EQ-5D-5L, Pearman Mayo Survey of Needs, the National Comprehensive Cancer Network Distress Thermometer, PA-F12, and Toronto Extremity Salvage Score were used as ePROMs. Data were analyzed descriptively.
Results:
Overall, 55 patients participated in the pilot study; 33 (60%) received an intervention by an APN, and 22 (40%) did not. Patients in sarcoma centers with APN service reported overall higher scores in quality of life and functional outcome. The number of needs and distress level were lower in sarcoma centers with APN service. No differences were found with respect to patients' fear of progression.
Conclusions:
Most of the ePROMs proved to be reasonable in clinical practice. PA-F12 has shown low clinical relevance.
Implications For Practice:
Using ePROMs appears to be reasonable to obtain clinically relevant patient information and to evaluate the quality of care in sarcoma centers.
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