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.

Strategic milestones & key activities for the upcoming 3-5 years

• Year 1: Publish guidelines on the use and reporting of PROs in Hodgkin Lymphoma, non-Hodgkin Lymphoma, Chronic Myeloproliferative Neoplasms, Chronic Lymphocytic Leukemia, and Chronic Myeloid Leukemia clinical trials have been published.
• Year 2-3: Initiate conceptualization of a global survey in selected hematological malignancy in collaboration with respective patient advocacy groups.
• Year 2-3: Publish the remaining EHA Guidelines on the use and reporting of PROs in adult clinical trials such as Myelodysplastic Syndrome, Acute Myeloid Leukemia, and Acute Lymphoblastic Leukemia clinical trials.
• Year 3+: Develop the embryonic outline for development of the SWG’s position paper on the incorporation of palliative care activities. We hope that this position paper will act as an awareness tool for the hematology palliative care community.

Learn more about the strategy and the upcoming activities of the group in our latest meeting report.

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.

If you have any questions, please email our SWGs team.