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Results of the Lymphoma Coalition patient survey on lymphoma and CLL
At the end of last year, the global Lymphoma Coalition, of which Lymphoma Action is a founding member, released the results of the ninth Global Patient Survey on lymphoma and CLL. The survey goes out every two years and was created to understand the experiences of people living with lymphoma and their carers.
Lymphoma Action works jointly with the coalition on the UK survey and uses the data and insights gathered to educate healthcare professionals on patients’ experiences and to help improve care and communication. The survey provides valuable data to support our submissions to NICE (National Institute for Health and Care Excellence) regarding the approval of new medicines. It also gives a clear understanding of patient experiences and values, guiding our patient affairs work and providing decision makers with concrete evidence of patient and carer needs.
“With over 1,200 responses from the UK, it’s a brilliant resource to have at our disposal – a huge thank you to everyone who contributed.
Information, guidance and support
We are very proud that the results show that 88% of people said they had used a resource from a patient organisation. As the NHS is increasingly stretched, patient organisations play a vital role in helping to provide information and support for patients. As the Lymphoma Coalition observes, ‘More and more people are turning to patient organisations and finding there the credible resources and empathetic support they need. They meet people who care and who understand what they are going through.’
Resources most often used
Booklets and other written information
Websites:
List of questions to ask doctors:
Social media (Facebook, X, LinkedIn, Instagram):
Support groups/peer support/buddy programmes:
Other findings - diagnosis
- More than 25% of lymphoma patients waited six months or longer to seek medical attention after the onset of symptoms
- 21% of patients waited six months or longer to receive a diagnosis after first seeking medical attention
- 69% of patients were told their lymphoma subtype or that they had CLL upon diagnosis – this has increased from 62% in 2022.
Other findings - treatment
- 78% of patient respondents had received treatment
- 69% of respondents received treatment close to where they live
- 63% of respondents reported no difficulties in obtaining treatment but 19% indicated that travelling to and from the cancer centre was a barrier
- 83% were not offered the opportunity to enrol in a clinical trial.
Focus on fatigue
- Fatigue was the most common symptom before diagnosis (64%) and also the most common side effect of treatment (79%)
- Fatigue had a moderate, severe, or very severe impact on 88% of patients who reported it as a side effect
- 61% of patients who reported fatigue as a side effect did not receive any help from their doctor to address this.
Emotional wellbeing
- The most prevalent concern was fear of progression or relapse
- 44% of respondents did not communicate their emotional difficulties to their healthcare team
- 48% reported that no recommendations to help with worries or concerns were received in the last six months
- 95% of caregivers suffer emotional impacts due to the lymphoma diagnosis of a loved one.
How this information helps
These patient-reported outcomes offer us invaluable insights into the true impact of lymphoma, revealing the realities of living with fatigue, the fear of relapse, and the obstacles that can be faced in accessing necessary treatment.
We use this information to advocate for better outcomes for everyone affected by lymphoma and to inform what we as a charity can do to drive a better future for everyone.
When we compare the UK results to the global report, it is interesting to note that, while many of the same challenges persist, there are key differences with regard to healthcare systems, economic disparities, and the access to quality care. For example: globally, 70% of patients were not offered a choice of treatment options, compared to 38% in the UK. In the UK, we are fortunate to have a healthcare system which prioritises finding and funding new treatments, provides free care at the point of delivery and offers access to cutting-edge diagnostics and therapies often unavailable elsewhere.
