Quality of Life and Symptoms

 

Quality of Life and Symptoms

The EHA SWG “Quality of Life and Symptoms” was formed within the European Hematology Association in 2006. The mission of the SWG is to disseminate knowledge among physicians and researchers with a view to maintaining high shared standards in the field of quality of life research, to develop both practical and clinical research recommendations on quality of life and symptom assessment in hematology.

The aims of the EHA SWG are:

  • Promotion of all aspects associated with quality of life and symptom research in the field of hematology;
  • Standardization of quality of life and symptom assessment in clinical trials in hematology;
  • Improvement of quality of clinical trials and post-marketing research with a PRO component in hematology;
  • Development of approaches to implement PRO in clinical practice in hematology;
  • Verification of the areas of patient-reported outcome application in hematology.
  • Promotion of educational and training initiatives in patient-reported outcomes research;
  • Exploration of similarities and differences in cultural, and linguistic aspects of symptom and quality of life research;
  • Identification of hurdles and solutions for implementation of patient-reported outcome measures in routine clinical practice.

The Chairs of the EHA SWG:

  • 2006-2009: C S Cleeland, PhD - McCullough Professor of Cancer Research, Chair of Department of Symptom Research, the University of Texas M. D. Anderson Cancer Center, Houston, USA
  • 2009-2011: A A Novik, MD, PhD - Professor of Internal Medicine and Hematology, Chair of the Department Hematology and Cellular Therapy, National Medical Surgical Center, Moscow, Russia
  • 2011- 2015: S Salek, PhD, RPh, FFPM, MCMS, MRPSGB, FESCP - Professor of Pharmacoepidemiology
    School of Life & Medical Sciences, University of Hertfordshire, UK; Visiting Professor - Estate of Hessen, Germany; Vice-President, PharmaTrain Federation; Chair - ISOQOL Patient Engagement Special Interest Group
  • 2016 - at present: E N Oliva, MD – Head of Myelodysplastic Syndromes and Anemia Section, Hematology Division, Azienda Ospedaliera “Bianchi-Melacrino-Morelli”, Reggio Calabria, Italy; President of Associazione QOL-ONE, Reggio Calabria, Italy
Secretary of the EHA SWG:
  • Tatyana Ionova, PhD - Professor of Post-Graduate Education Institute, National Medical Surgical Center, North-Western Branch, St. Petersburg, Russia
Scientific Advisory Board of the EHA SWG:

Chair of Board
  • Anton Hagenbeek - Professor of Hematology, Dept. of Hematology, Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands

Board members

  • Christen L. Andersen – Senior Researcher, Department of Hematology, Copenhagen University Hospital, Rigshospitalet, Denmark
  • Gary Gorodokin - President, New Jersey Center for Quality of Life and Health Outcome Research, Saddle River, NJ, USA
  • Kirstie L Haywood - Senior Research Fellow, University of Warwick, Coventry, United Kingdom
  • Tatyana Ionova – Сhair of Board, Multinational Center for Quality of Life Research, St.Petersburg, Russia
  • Robert Klaassen – Professor, Department of Pediatric, Division of Hematology/Oncology, University of Ottawa,Children's Hospital of Eastern Ontario, Ottawa, Canada
  • Esther N Oliva – Head of Myelodysplastic Syndromes and Anemia Section, Hematology Division, Azienda Ospedaliera Bianchi-Melacrino-Morelli, Reggio Calabria, Italy
  • Sam Salek – Professor of Pharmacoepidemiology, University of Hertfordshire, Hatfield, Herts, United Kingdom
    Sam Salek – Professor of Pharmacoepidemiology, University of Hertfordshire, Hatfield, Herts, United Kingdom
  • Anita Waldmann – Chair, LEUKÄMIEHILFE RHEIN-MAIN E.V. Patient Organization, Ruesselsheim, Germany.
Projects

2009-2012: Development of the Guidelines for patient-reported outcome assessment in patients with hematological disorders. Clinicians and researchers from 17 countries worked together, in close collaboration with the representatives of Patient Organizations, to complete the Guidelines titled Patient-Reported Outcomes in Hematology published in 2012.

From 2012: Project “The Conceptualisation, Development and Validation of a Patient-Reported Outcome Measure For Patients with Haematological Malignancies in Routine Clinical Practice” has been launched by the EHA SWG.

Project Stage Stage Title Status
Stage 1 Conceptualisation of Patient Quality of Life Completed
Stage 2 Qualitative Interviews (Concept elucidation) Completed
Stage 3 Item Generation Completed
Stage 4 Pre-testing Completed


Period 2: December 2016 to December 2017

Stage 5: Scale Refinement and Item Reduction 

Stage 6: Validation