Lymphoma Coalition Global Patient Survey 2024

The Lymphoma Coalition has been conducting its international Global Patient Survey on lymphomas & CLL every two years since 2008.

The survey seeks to understand patient experience in lymphomas as well as the impact of treatment and care. The Lymphoma Coalition works with its global members, including Lymphoma Action, to deliver the survey and we use the results to drive improvements in treatment and care.

The survey was completed by 1,204 people (approximately 90% patients and 10% caregivers) in the UK. The findings have now been published and we thank everyone who took the time to get involved.

Read our summary of the report highlights

What did we learn?

• A quarter of patients (25%) experienced their symptoms for more than six months before seeking medical care. This has hardly changed since the 2022 survey (26%).
• 21% of patients waited six months or longer to receive a diagnosis after receiving medical attention.  
• 63% of respondents reported no difficulties in obtaining treatment. However, 19% indicated that travelling to and from the cancer centre was a barrier.
• Over half of patients did not receive information on clinical trials. 83% were not offered the opportunity to enrol in a clinical trial.
• Key reported side effects from treatment were fatigue (76%), hair loss (48%), constipation (42%), peripheral neuropathy (39%) and lack of concentration (32%). Despite 76% of people experiencing fatigue, 63% of patients who reported this symptom did not feel they received the support they needed from their healthcare team to manage it.
• More than 80% of patients reported some type of emotional impact attributable to their lymphoma diagnosis with fear of progression and relapse being of most concern.
• 95% of caregivers suffer emotional impacts due to the lymphoma diagnosis of a loved one.

The response from Lymphoma Action

“The results make for interesting reading” says Ropinder Gill, Chief Executive at Lymphoma Action. “We know that lymphoma can be difficult to spot, as the symptoms can be quite vague. The survey certainly reflects this issue, which is why raising awareness about the signs and symptoms of lymphoma amongst the general public is so important.”

Ropinder adds: "It's so important that, along with so many other lymphoma patient organisations across the world, we can hear directly from people affected by lymphoma about their diagnosis, treatment and care, and the psychosocial impact of lymphoma on their lives. We use this information to advocate for everyone affected by lymphoma and to inform what we as a charity can do to improve our information and support services."

Over the next few months, we will be working hard to share the survey results with key decision makers. We will also be continuing to address the issues raised with awareness campaigns, the provision of healthcare professional education, and high quality information and support to people affected by lymphoma and their caregivers, family and friends.