Dear friends of the CML Advocates Network,
It is a big pleasure for us to announce the publication in the Journal of Cancer Research and Clinical Oncology of our article "Factors influencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries".
Factors influencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries.
In 2012, the CML Advocates Network decided to conduct a large, scientifically sound international study on adherence enrolling patients from 63 countries and 79 CML patient organisations based on a comprehensive questionnaire in 12 languages.
The aim of this study was to investigate motivations and behavioral patterns of adherence in CML and subsequently support hematologists and patients to improve adherence and develop suitable adherence tools. Overall 2.546 questionnaires filled in by CML patients were returned.
Our adherence research is one of the largest adherence studies made so far and very important findings on the motivations and risk factors of patients on intentional and non-intentional non-adherence, potential tools to drive adherence. We are proud of sharing with you now a great example of evidence-based patient advocacy.
This publication has been a tough ride for us non-scientists over the past three years, given we needed support to do the data analysis and write a scientific paper. Authors were the patient advocates Jan Geissler, Giora Sharf, Mina Daban, Jan de Jong, Tony Gavin, Jana Pelouchová, Euzebiusz Jan Dziwinski, plus Dr. Verena Hoffmann who has been the scientific author, supported by Prof. Joerg Hasford!
Better information on the disease, medication and management of side effects, supported by haematologists, is key to improve adherence so it would be very appreciated if you can share this key publication with the CML community.
Jan Geissler, Giora Sharf, Lidija Pecova and Celia Marín
Your CML Advocates Team