Patients, physicians and researchers all have a unique perspective on quality of life. However, does a patient perceive it the same way as their physician? With Quality of Life becoming more and more important when hematological diseases are turning into chronic diseases, this year’s “Patient Advocacy Session” at the European Hematology Association’s Annual Congress 2012 provided key insights into the patients and professionals’ perspectives on this important issue. The session, defined by the EHA Patient Working Group and chaired by Jan Geissler of the CML Advocates Network and Androulla Eleftheriou of the Thalassaemia International Federation, has become an integral part of EHA’s congress.
The chairs of this session, Jan Geissler and Androulla Eleftheriou, introduced the session by outlining the importance of Quality of Life for patients with hematological diseases, as well as the growing importance of its appropriate measurement in therapy choice and reimbursement decisions.
Patients perceive side effects and symptoms differently than their doctors
However, perceptions on the severity of treatment-related or disease-related side effects largely differ between patients and health professionals. A recent study published by the patient community, presented by Erik Low of Myeloma Patients Europe, has evidenced fundamental differences between patients, nurses and doctors in assessing the impact e.g. of hair loss, fatigue, decreased body function, neuropathy and thrombotic events. Physical and psychological effects of disease symptoms and side effects of therapies are often prioritized very differently, leading to challenges in communication and treatment choice. Erik Low also raised the issue of how patient representatives could become more involved in tailoring QoL surveys as well as introducing Quality of Life issues in trial designs and clinical care guidelines.
EHA published guideline on Quality of Life measurement in clinical trials
How should physicians and clinical researchers then best assess Quality of Life of their patients? Tatyana Ionova, Secretary of the EHA Scientific Working Group on Quality of Life & Symptoms, provided some guidance on how to monitor patient quality of life in hematological diseases. Tatyana Ionova also presented the recently published Guideline “Patient-Reported Outcomes in Hematology” which was developed in over three years by EHA SWG’s three-year project. The Guideline provides recommendations to clinicians on application of patient-reported outcome assessments in clinical studies patients with hematological disorders.
Growing importance of patient self-reported outcomes in online patient communities
However, there is more than pure science in measuring quality of life. With the paradigm shift initiated by the Internet, online communities like PatientsLikeMe have emerged to collect real-life evidence on treatments, side effects and Quality of Life. This is no longer a US-phenomenon: Denis Costello of the European rare disease patient organization EURORDIS presented how their upcoming European patient self-reported outcome platform RARECONNECT will enable patients and researchers in comparing quality of life of rare cancer patients over time and against aggregated data from other patients.
LIvely discussions with the audience followed.
EHA Patient Advocacy Session will grow into a Patient Advocacy Track in 2013
The third Patient Advocacy Session at the EHA Annual Congress 2012 has been a great success, attended by around 300 participants, with many of them following the presentations on screens outside of the overcrowded meeting room. Due to the great interest by attending hematologists, EHA's Board has already decided that the Patient Advocacy Session will grow into a full patient advocacy track with three sessions in 2013. The EHA Patient Working Group, of which the CML Advocates Network is a member, has already started working on the programme for next year.
- eCancer Interview on EHA17 Patient Advocacy Session 2012, http://ecancer.org/tv/pubdate/1500
- The Oncology Report: Cancer Patients Differ With Doctors on QoL Issues, 6 August 2012
- EHA SWG QoL and Symptoms, http://www.ehaweb.org/science/eha-scientific-working-groups/quality-of-life-and-symptoms/
- Detecting Myeloma, ways to shortening an often painful and tedious patient odyssey: results from an international survey. Myeloma Euronet (2009). Haematologica 2010; 95[suppl.2]:389, abs. 0939
- Guidelines on Patient-Reported Outcomes in Hematology. Editors: A. Novik, S. Salek, T. Ionova, published by EHA Scientific Working Group Quality of Life and Symptoms (2012)
- EURORDIS Platform "RareConnect - Connecting Rare Disease Patients Globally"