Global CLL Community Insights – How Stakeholders Can Collaborate to Improve Care

A major new international report, Global CLL Community Insights: How Stakeholders Can Collaborate to Improve Care, has been published, highlighting the urgent physical, emotional, and informational needs of people living with chronic lymphocytic leukaemia (CLL) and their care partners.

Drawing on survey data from 18 countries, the report calls for closer collaboration between patients, healthcare professionals, and advocacy organisations to improve communication, strengthen decision-making, and enhance quality of life.

Click on the button below to access this report:

Living with CLL

CLL is a slow-growing but incurable blood cancer that often affects patients for many years. Many people start with “active monitoring” instead of immediate treatment, whilst others require therapy as the disease progresses. The uncertainty around whether and when treatment will be needed can cause significant emotional strain, alongside the physical burden of the disease.

Key Findings from the Report

  • Emotional and Physical Impact: Patients face symptoms such as fatigue, infections, and anaemia, alongside anxiety, financial pressures, and social isolation. The 2023 Global Leukaemia Experience Survey found that 66% of patients reported increased anxiety since diagnosis, and 46% feared relapse.
  • Gaps in Information: Nearly half of patients do not receive written information at diagnosis, and many report insufficient guidance on managing symptoms or understanding treatment options.
  • Shared Decision-Making Shortfalls: While 76% of patients wish to take an active role in treatment decisions, 70% were not offered more than one option prior to starting their most recent therapy.

Four Recommendations for Better Care

The report identifies four priority actions for improving outcomes in CLL care:

  1. Address both physical and emotional needs – support should extend beyond medical treatment.
  2. Proactive engagement – ensure patients understand which symptoms to report and how to reduce infection risks.
  3. Multidisciplinary care teams – combine medical, emotional, and practical support for a more holistic approach.
  4. Empower patients through shared decision-making – provide personalised treatment plans and consistent communication.

A Call to Action

By placing patients and care partners at the centre of decisions, fostering strong healthcare relationships, and providing clear, accessible information, the CLL care pathway can become more supportive, effective, and empowering.

Notes:

  • Chronic lymphocytic leukaemia (CLL) is the most common type of leukaemia in adults.
  • The report draws on data from multiple global surveys, including the 2023 Global Leukaemia Experience Survey and the 2024 Global Patient Survey on Lymphomas & CLL.
  • Countries represented include Australia, Brazil, Canada, Colombia, Czech Republic, Denmark, Estonia, Lithuania, France, Germany, Ireland, Italy, Poland, Slovakia, Spain, Switzerland, Taiwan, and the United Kingdom.

Click on the button below to access this report:

This report was developed and funded by AbbVie, in partnership with CLLAN (CLL Advocates Network), leveraging insights from the global CLL patient and care partner community.