Highlights from the SWG
Quality of life and symptoms: “Frontiers in Patient-Centrism”
Chair: Esther Oliva (Italy)
- EHA evidence-based “Guidelines for the use of patient-reported outcomes in adult
patients with hematological malignancies” in progress. Systematic review of
literature on multiple myeloma
Edward Laane (Estonia)
- Barriers and facilitators of introduction of PROs in a population based MM registry
Christine Bennink (Netherlands)
- New issues in patient reported outcomes measurements of MPN patients
Tatyana Ionova (Russia)
- Implementation of HM-PRO in routine clinical practice
Sam Salek (UK)
Activities on evidence-based guidelines for the use of patient-reported outcomes in adult patients with hematological malignancies
- the systematic review for the Guidelines chapter on patient-reported outcomes in multiple myeloma together with Cochrane Haematology and University of Cologne was finalized.
- the plan of systematic review for the Guidelines chapter on patient-reported outcomes in Ph-negative MPNs together with Cochrane Haematology and University of Cologne was prepared and the work is ongoing.
Remembering Professor Anton Hagenbeek: the EHA SWG “Quality of Life and Symptoms” perspective
Professor Anton Hagenbeek will be remembered by everyone involved in the activities of the EHA SWG “Quality of Life and Symptoms” as a passionate doctor, an exceptionally thoughtful and highly impactful scientist, a treasured colleague, and an empowering mentor.
On behalf of the members of the EHA SWG “Quality of Life and Symptoms” and its Board we would like to use this opportunity to honor the valuable contributions of Professor Anton Hagenbeek to the activities of the Group. Anton Hagenbeek contributed substantially to the creation of the EHA SWG “Quality of Life and Symptoms”, which was formed in 2006 within the European Hematology Association and was outstanding member of the Board since its origin. His boundless enthusiasm and commitment have helped our Group to drive new innovations in patient-reported outcomes in hematology. He inspired a number of important Group initiatives. Being the world leader in the field of hematology Ton was successful at uniting hematologists, specialists in PRO research, and representatives of Patient Organizations in Europe and elsewhere to develop a number of projects undertaken by the EHA SWG “Quality of Life and Symptoms”.
Being a physician, a scientist, and a patient himself, he had a deep understanding of the genuine patient needs and made serious efforts to improve the many aspects of their lives. Ton was a real ambassador for patient engagement in the activities of our Group and EHA in general. He was successful in strengthening the collaboration between healthcare professionals and patient community.
His dedication, expertise, and time are greatly appreciated by all of us.
The most significant project of the EHA SWG “Quality of Life and Symptoms”, supported by Ton, was the development and production of the Guidelines on patient-reported outcomes in hematology. This project was highly appreciated by the EHA and at present the new evidence-based Guidelines on patient-reported outcomes measurement in hematology are being developed. We are really very sorry we have no chance to discuss these new Guidelines with Ton and lean on his expertise and guidance.
Ton Hagenbeek was a remarkably great man. The warmth of his personality, always shared with his broad smile and gregarious laughter, extended to his unique style.