The PROFILES registry offers scientific data in the area of medical psychology and more specific on quality of life of cancer survivors. The PROFILES registry is open to academics anywhere in the world for scientific purposes, free of charge. The archive can be found on the following website: http://www.profilesregistry.nl
In 2009 a questionnaire has been composed treating the subjects health-related quality of life, use of health care and satisfaction with care in patients who had been diagnosed with multiple myeloma.
The questionnaire was submitted to 160 patients who were diagnosed with multiple myeloma between 1999 and 2008. 120 patients completed the questionnaire.
Questionnaires used:
- General Questions
- Work
- Cancer and Care
- Comorbidity
- EORTC-QLQ-C30 (version 3)
- EORTC-disease specific lymfoom (CLL)(in development)
- EQ5D
- DS14
- B-IPQ
- FAS
- HADS
- IOC1/IOC2/IOC1+items2
- EORTC-INFO25 (used to be EORTC-INFO26)
- Internet