Scientific Working Group Quality of Life and Symptoms
Scientific Working Group Quality of Life and Symptoms was established within the European Hematology Association in 2006. Its Chair is A.A. Novik, Professor of Internal Medicine and Hematology, Chair of the A.A. Maximov Hematology/BMT Department, the Pyrogov National Medical Surgical Center, Moscow, Russia, and its Secretary is Dr. T. Ionova, Chair of the Multinational Center of Quality of Life Research, St. Petersburg, Russia.
Coordination of QoL and symptom research in hematology within the new Scientific Working Group is aimed at improving the quality of care for patients with hematological diseases, help formulate symptom outcome measures of hematologic clinical trials which should result in better treatment outcomes, and provide data for health-policy decisions. Among the priorities of the Scientific Working Group is to develop unified approaches to symptom and quality of life assessment within the European Community and to initiate international clinical trials aimed at reducing the symptom burden in patients with hematological malignancies.
The following activities of the Working Group for the coming years have been adopted by the participants of the first meeting (17 June, 2006, Amsterdam):
- To conduct a survey among hematologists to determine the utilization of patient-reported outcome measurement in clinical practice and to identify their views towards the applicability of quality of life and symptom assessment in patient management.
- To develop the EHA guidelines for hematologists titled "Patient-reported outcomes in hematology: conceptual and methodological issues, clinical applications".
- To develop EHA Minimum Clinical Recommendations for patient-reported outcome measurement (Pain and other symptom assessment, QoL assessment).
- To initiate international clinical trials aimed at reducing the symptom burden in patients with hematological malignancies.
- To promote education and training in patient-reported outcomes for hematologists and researchers in the field of hematology.
- To establish QoL and Symptoms SWG Advisory Board in order to provide guidance for incorporation of patient-reported outcomes into clinical trials.
- To establish liaisons with other EHA SWGs and other organizations in the field of patient-reported outcome research.