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 trials.
- 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 was finalized in English in 2018 and has been translated into several international languages with linguistic and cultural validations. The HM-PRO has been used in a worldwide survey conducted by the Acute Leukemia Advocates Network (ALAN); in addition, it is being used in a national survey by Associazione Italiana Pazienti affetti da Sindrome Mielodisplastica (AIPASIM). At present, the HM-PRO is being used in clinical trials.
Since 2020, the EHA SWG is running a project on the development of evidence-based guidelines for the use and reporting of patient-reported outcomes (PROs) in adult patients with hematological malignancies, in collaboration with other EHA SWGs. The activities on the preparation of systematic reviews for these guidelines are supported by a collaboration with Cochrane Haematology and the University of Cologne.
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