Dear sir/madam,
You are being asked to take part in a research study. Participation is voluntary. The purpose of this study is to evaluate whether the items in the questionnaires that are currently completed by patients with a brain tumor are still relevant. Therefore, we will ask patients, their informal caregivers and healthcare professionals which symptoms and complaints and activities in daily life are most relevant to patients with a brain tumor.
This study was initiated by the international Response Assessment in Neuro-Oncology – Patient-Reported Outcome (RANO-PRO) working group, which is established to provide guidance on the use of patient-reported outcomes (e.g., questionnaire to assess the patient's symptoms and signs) in patients with brain tumors in clinical studies and in daily clinical practice. The study is being conducted by various hospitals in the Netherlands, the United States, the United Kingdom, Switzerland and India. For this study, patients with a brain tumor and their informal caregivers will be asked to participate. In addition, healthcare professionals involved in the treatment of brain tumor patients will also be asked to participate.
Read the following instructions carefully before starting the questionnaire.
Instructions
Below is a list of symptoms and issues related to daily functioning and quality of life that patients with brain tumors sometimes report. Please rate the relevance of the symptoms and issues to the situation of the patient during the past year. Please answer all of the questions yourself by circling the number that best applies. There are no ‘’right’’ or ‘’wrong’’ answers. The information that you provide will remain strictly confidential.
Please rate the relevance of the issues addressed in the questionnaire on a 4-point scale:
0 = not at all relevant
1 = a little bit relevant
2 = quite a bit relevant
3 = very relevant
Please note that a symptom or issue should only be rated relevant if it applies to the situation of the patient. You can think of how often a symptom or issue has occurred during the past year, but also how important this symptom or issue is.
Most likely there will be questions that do not apply to the situation of the patient. The reason we have included all these questions is that we want to find out if there is anything that we do not yet know about and that we do not normally ask about.
If a question does not apply to the situation of the patient, you can answer the question with ‘0 = not at all relevant’.
Some of the questions include examples. These are just examples and the question can still be relevant if one or even all of the examples do not apply to the situation of the patient.
The completion time is approximately 10-20 minutes. By continuing with the questionnaire, you give consent to the use of the information that you provide for the research purposes as stated above.
Continue to the questionnaire by clicking in the 'Next' button.