Gender Neutral
Type Module
Testing Phase III - in development
Principal investigator(s)
Lonneke van de Poll-Franse
IKNL
Eindhoven, Netherlands
Study coordinator(s)
Marieke van Leeuwen
The Netherlands Cancer Institute
Netherlands
, Mees Diederik Egeler
The Netherlands Cancer Institute
Amsterdam, Netherlands

Project summary

The introduction of immunotherapy and targeted therapy has substantially improved the clinical outcomes of stage III (local metastases) and IV melanoma (distant metastases) patients. However, these treatments present their unique combination of potential (immune-related) adverse events (irAEs) that might affect the patients’ health-related quality of life (HRQOL). A validated questionnaire that adequately covers these issues does currently not exist. Therefore, this study aims to develop an HRQOL questionnaire for patients with advanced melanoma.

Achievements

We have finalized the literature review on the topic, interviewed 18 healthcare professionals, and finalizing the patient interviews. We have created the initial issue list based on the literature review results, incorporated adjustments based on the healthcare professional interviews, and currently updating it based on the patient interview results.

Current status:

Expected completion of the future steps of the project:

3) Pre-testing and psychometric property evaluation
September 2024

4) Phase 4: To be determined

Future plans

Currently setting up to commence phase 3.

For patients

Not that long ago, people diagnosed with advanced skin cancer had relatively little chance to survive their disease. But, through impressive research, new therapies have been created that have improved these odds. Therefore, these new treatments have become the new standard to treat people with advanced skin cancer. However, as these treatments are new, we do not fully understand what physical, mental, and emotional issues these people can experience from their disease and treatment. We are therefore creating a questionnaire that will help us measure this.

Publications

  • Phase I of the Development of an EORTC QOL Module for Patients with Advanced Melanoma (ISOQOL ORAL presentation)

Authors:
M.D. Egeler, M. van Leeuwen, H. Eriksson, L. Fox, M. Van Hemelrijck, M. Jefford, J. Lai-Kwon, O. Morag, G. Pesah, A. Rogiers, S. Serpentini, H. Tufvesson Stiller, N. Vanlaer, A.C.J. van Akkooi, L.V. van de Poll-Franse, on behalf of the EORTC QLG

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