Global Patient Survey on lymphoma and CLL

Published on: 17 November 2020

The UK report provides an insight into the impact of treatment and care for people living with lymphoma. 
Read the UK report

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The Lymphoma Coalition (LC), of which Lymphoma Action is a member, has produced its 2020 Global Patient Survey. The first survey of this type was produced in 2008 and is now conducted every 2 years.

The aim of the survey is to understand patient experience in lymphomas as well as the impact of treatment and care worldwide. The Lymphoma Coalition and its global members use results to ensure patient voices are heard and to drive planning, actions and support. 

Lymphoma Action supported and promoted the survey in the UK. As a result, 679 people responded to the patient survey and 64 to the caregiver survey. This is a great response and thank you to all those people who gave their time to share their experience.

The survey provides really valuable insight into the impact and experience of people affected by lymphoma. We will make full use of what you have told us through the survey to inform our strategy and planning and develop information and activities in direct response to the results.

Ropinder Gill, Chief Executive, Lymphoma Action

Summary of key points from the UK survey

  • 53% of people needed more information about diagnosis and what it means, 46% needed more information about treatment options and 43% wanted more information on the side effects from treatment. 
  • The five most reported side effects of treatment were fatigue* (79%), hair loss (56%), nausea and vomiting (49%), peripheral neuropathy (49%) and constipation (46%).
  • The most reported psychosocial effects that patients experienced in the last 12 months as a result of their diagnosis were fear of progression of their lymphoma* (44%), fear of cancer relapse (40%), anxiety (35%), depression (30%) and physical appearance (28%).
  • 83% of people said that they felt there were no barriers to them receiving treatment. 
  • The Caregivers survey highlighted the extensive range of support caregivers provided, and highlighted that providing emotional support was the hardest part of caregiving.

*Toolkits available

In response to the survey results, the Lymphoma Coalition have produced the following toolkits which they hope will be a helpful resource. They include questions to ask your medical team, frequently asked questions, general information and a therapy overview:

17 November 2020