Quality of Life and Symptoms
The goals of the SWG are:
- To promote the evaluation of patient reported outcomes (PROs) in hematology in daily clinical practice and in clinical trial.
- To foster international networking of hematologists, researchers, patient representatives and patient research partners to share their interest in the development and clinical application of PROs.
- To facilitate educational activities in PRO assessment.
- To promote PRO research in hematology.
Research activities since 2012 include the creation of a new tool for the evaluation of PROs in patients with hematological malignancies (HM-PRO). The development of the HM-PRO has been finalized in 2018 and the tool was presented within the annual EHA congress in Stockholm. Translations of HM-PRO into several international languages with linguistic and cultural validations have been finalized. The HM-PRO was used in a worldwide survey conducted by the Acute Leukemia Advocates Network (ALAN). At present the HM-PRO is being used in several observational studies in different countries.
In 2020 the project on the development of evidence-based guidelines for the use of patient-reported outcomes in adult patients with hematological malignancies was initiated by the EHA SWG “Quality of Life and Symptoms” in collaboration with other EHA SWGs. The activities on preparation of systematic reviews for the guidelines on patient-reported outcomes in collaboration with Cochrane Haematology and University of Cologne have been started.
Become a registered member of this Scientific Working Group: Apply here