Content coverage of Patient-Reported Outcome (PRO) measures in neuro-oncology
The goal of this project is to establish the content validity of the available patient-reported outcome (PRO) measures used in primary and secondary brain tumor patients. Findings from PROs are essential to inform patients and relatives in the treatment decision-making process, as well as the research community, policy makers, and physicians. Improvements in the quality of outcome assessment will reflect the recent changes in treatment options and address the psychometric limitations in current measures. Relevant and appropriate PROs for brain tumor patients could also help incorporate patient perspective can into the regulatory decision making process.
The Response Assessment in Neuro-Oncology-Patient-Reported Outcome (RANO-PRO) working group is an international multidisciplinary collaboration that has been established to provide guidance on the use of PRO measures in clinical trials and practice for adult patients with primary and secondary brain tumors. Researchers will assess the aspects of functioning most relevant for patients with brain tumor using a study-specific questionnaire based on the WHO International Classification of Functioning, Disability and Health.
Patients are eligible for participation if they meet the following criteria:
- They are diagnosed with a glioma, primary central nervous system lymphoma, meningioma, or intracranial brain metastases.
- They are adult patients ≥18 years of age.
- They have signed the informed consent form.
Patients are not considered eligible for study participation if:
- They are not eligible for participating in the study according to the treating physician, due to very poor physical condition or unable to provide consent to research participation (i.e. filling in the survey)
- They cannot complete the survey due to a language barrier or limited understanding of the survey.