Lymphoma Coalition Global Survey results

The international survey, conducted every two years, was launched in April and aims to understand the patient and caregiver experience of lymphoma and CLL as well as uncover trends, themes and geographic variations. The survey was completed by 488 people (434 patients and 54 caregivers) in the UK. The findings have now been published and we thank everyone who took the time to get involved.

You can read the full report here.

What did we learn from the results?

• Just over a quarter of patients (26%) experienced their symptoms for more than six months before seeking medical care  
• Three out of five patients were seen by three or more healthcare professionals for their symptoms before receiving their initial diagnosis and 14% were seen by five or more.  
• Over one fifth of people did not fully understand their diagnosis and one fifth felt it was not explained at all.
• 30% of people reported that they didn’t receive any information from their medical team about organisations or charities that could support them, out of those that did, 84% were very satisfied or satisfied with the quality of the information.
• When asked whether there were barriers to getting treatment, the impact of the pandemic was stark - 27% more people felt that there were barriers in 2022 than in 2020.
• The impact of the pandemic on mental health was also apparent, with 55% saying that their anxiety was worsened during the pandemic and 38% reported worse depression symptoms.
• Key reported side effects from treatment were fatigue (80%), hair loss (60%), constipation (56%) and changes in sleep patterns (53%). Despite 80% of people experiencing fatigue, 43% of patients did not discuss this with the doctor of the last two years.

What’s next?

These survey results demonstrate the need for Lymphoma Action to continue to push for symptom awareness, and ensure we are working closely with healthcare professionals and the NHS on improving diagnosis, treatment and care. We will also continue to ensure our information and resources are up-to-date and reflect the needs of patients and that we contribute to the process by which new treatments and drugs are approved by the National Institute for Health Care and Excellence (NICE).

With our partners we are continuing to campaign for the publication of the 10 Year Cancer Plan from the government. We are calling for robust, fully costed and funded plans that deliver on key ambitions, including faster diagnosis and personalised care.

Resources

Read more about the emotional impact of living with lymphoma and find useful resources here.

Catch up on our webinar discussing managing symptoms and side effects: