How to support those living with DLBCL in Europe

September marks Blood Cancer Awareness Month (BCAM) and today, the 15th of September is World Lymphoma Day. This is an especially important day for those living with diffuse large B-cell lymphoma (DLBCL), a type of blood cancer and the most common type of non-Hodgkin lymphoma.[1] DLBCL is an aggressive disease and many patients are at high risk of not responding to initial therapy or relapsing thereafter. This World Lymphoma Day, we at Incyte are committed to elevating awareness of DLBCL to support the DLBCL community.

Unpacking the realities of DLBCL

In Europe, each year, approximately three or four per 100,000 people are diagnosed with DLBCL.[2] When faced with a diagnosis, they must deal with the unknown as they enter a new and very much unexpected chapter of their lives.

Although there have been advancements, there is still a significant unmet need for the DLBCL community; one in three patients do not respond to initial therapy or relapse thereafter.[3] ?With many emerging scientific breakthroughs in this area but continued uncertain prognosis, it’s vital that we increase disease education, so patients are more informed about the care options available to them and the impact they may have on their lives.

Experiencing a full spectrum of emotions

Each instance of DLBCL is unique, as is every DLBCL patient, and there is no one-size-fits-all approach to supporting those living with this disease. We know first hand from our partnerships with European patient advocacy groups that those living with DLBCL experience a wide range of emotions which can be tricky to navigate during their disease journey: shock, denial, fear, anxiety, anger, sadness – to name just a few. In fact, 82% of people said they had experienced psychological and emotional effects in the past 12 months, according to the Lymphoma Coalition’s most recent Global Patient Survey on Lymphoma and CLL (2022).[4]

The unpredictability of disease symptoms, progression and fatigue can also interfere with work and social engagements, which can amplify emotional trauma.

Standing together in the fight against DLBCL

So how do we support those living with DLBCL to help redefine these chapters of their life and meet their individual needs?? At Incyte, we believe it’s vital to focus on the patient, not just the disease. This is why we partnered with seven European lymphoma patient organizations from seven different countries to better understand the DLBCL patient journey and identify meaningful ways to support patients.? We are currently working with these organizations to co-create a toolkit that will provide EU patients and caregivers with key information about living with DLBCL. Among other things, the toolkit will contain disease educational content for DLBCL patients for them to have informed, open, and honest discussions with their healthcare providers (HCPs) about their individual needs and preferences. The toolkit will also address the often overlooked emotional, social and psychological experiences that are common when living with DLBCL.

Our hope is that this type of resources will support patients in every step of their journey with DLBCL.

Our vision for a brighter future

My colleagues and I at Incyte are passionate about supporting patients with critical medical needs, including those within the DLBCL community, and learning more about the lived experiences of patients and their caregivers. We hope that by collaborating with patients and lymphoma advocacy groups on the toolkit and other initiatives, we are making strides towards a more positive future for those living with DLBCL.

[1] CancerMPact treatment architecture. Non-Hodgkin Lymphoma, EU5. Cerner Envisa. May 2022.

[2] Tilly H, Vitolo U, Walewski J, et al. ESMO Guidelines Working Group. Diffuse large B-cell lymphoma (DLBCL): ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up.?Annals of Oncology. 2012; 23(7): vii78-vii82.?

[3] Skrabek P, et al. Emerging therapies for the treatment of relapsed or refractory diffuse large B cell lymphoma. Current Oncology. 2019; 26(4): 253–265. doi.org/10.3747/co.26.5421.

[4] Lymphoma Coalition. World Lymphoma Awareness Day: WLAD 2023 Toolkit. Available at https://lymphomacoalition.org/world-lymphoma-awareness-day/ (last accessed August 2023)

?