Specialized Working Group on Quality of Life and Symptoms (QLS)
Overview
The QLS SWG’s mission is to improve the quality of life for all patients experiencing hematologic disorders.
Our primary focus is running a project on the development of evidence-based guidelines on patient-reported outcomes (PROs) in adult patients with hematological malignancies. We do this in collaboration with other EHA SWGs.
Our goals 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 have included 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). Additionally, it’s 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.
The preparation of systematic reviews for these guidelines are conducted in collaboration with Cochrane Haematology and the University of Cologne.
Join us
If you work in our field and share our objectives, you’d be welcome to join our SWG. However, before you apply, we recommend you read our application guidance.
Ready? Apply now on the EHA Portal.
Apply to join this SWGIf you have any questions, please email our SWGs team.