All patients with lymphoma deserve optimal care. The report Lymphoma Care in Europe: Ongoing Exploration of Disparities in Care demonstrates there are significant disparities across Europe in accessing timely, adequate care.
LC is determined to improve this situation, working alongside other members of the lymphoma community.
The following are identified priorities for the Lymphoma Coalition:
1. Statistics
Credible, up-to-date, reliable statistics are difficult to find. The grouping of almost all lymphoma statistics under an NHL umbrella is unhelpful due to wide differences in symptoms, disease trajectory and treatment options amongst the more than 80 different subtypes.
Registries have a critical role, particularly for rare lymphomas. Information garnered from well-functioning registries that integrate patient-reported issues and clinical data can contribute to improved care and improved clinical trial design.
2. Clinical Practice Guidelines (CPG)
Evidence-based CPGs must keep pace with regulatory approval of new therapy classes. Many doctors rely on guidelines to understand where a new treatment fits in the treatment paradigm to ensure they are providing optimal care to patients.
3. Therapy Access
From the information that is publicly available on therapy access, it is apparent that therapies – especially novel treatments – are not uniformly available across Europe. There are pronounced access issues in Eastern Europe, but Western, Southern and Northern Europe also have countries with limited access.
4. Clinical Trials
Most trials address relapsed/refractory disease, which LC applauds as more treatment options are needed in all subtypes for patients whose lymphoma does not respond to therapy or where the disease returns. It is important to remember that patients, regardless of the line of therapy, continue to report short- and long-term issues that significantly impact their quality of life and future trials need to focus on therapies that have minimal or no side effects.
5. Fatigue
Fatigue is the most reported physical side effect that affects the quality of life for lymphoma patients, regardless of region or subtype. More needs to be done to alleviate the effects of fatigue.
6. Barriers to Care in Eastern Europe
Patients in Eastern Europe report more barriers to care than anywhere else, with financial issues being their primary concern.
7. Information
It is critical that patients have access to credible, understandable information throughout their patient experience, but especially in the beginning.
8. Psychosocial Support
Most patients will not talk about their psychosocial concerns with their doctor, even if these issues are greatly impacting their quality of life.
The psychosocial impact of the disease must be a focus of care even if it is something as simple as a referral to other places for support. It is important that physicians start the dialogue with patients by asking about their emotional health, let them know concerns like anxiety and fear of cancer recurrence are common and direct to other support when needed.
Lymphoma Coalition Europe Reports
LCE publishes a range of reports covering key issues on the diagnosis, treatment and care of lymphomas and CLL in Europe, highlighting gaps or discrepancies in lymphoma healthcare policy and practice and making recommendations for improvement.
LCE publications are aimed at all those with an interest in improving outcomes in lymphoma and can be used by patient/care advocacy organisations to support the case for change in their countries.
Lymphoma Care in Europe: Ongoing Exploration in Disparities in Care (2019)
Building on the regional findings focused on in 2017, this report looks at the differences between lymphoma care in north, south, east, and west Europe with the following objectives:
- assess changes in incidence and mortality
- identify disparities in treatment and care
- analyse phase II and III clinical trials availability
- report on the patient experience
- identify and make recommendations for future lymphoma advocacy initiatives in Europe.
Lymphoma Care in Europe: Gaps and Disparities in Patient Care (2017)
People diagnosed with lymphoma in Europe do not all receive the same high standard of treatment and care that they deserve. LCE’s Lymphoma Care in Europe report examines the extent of those differences and disparities, covering therapy regulation and access, clinical trials and patient/carer experience. Drawing on the Coalition’s library and database of resources, data from its Global Patient Survey and a range of other recognised sources, the report provides a revealing overview of the situation facing people with lymphoma throughout Europe, before concluding with a comprehensive set of findings and recommendations
Subtype Reports
Hodgkin Lymphoma: European Subtype Series (2017)
Chronic Lymphocytic Leukaemia: European Subtype Series (2017)