A charter for improving care for people living with chronic lymphocytic leukemia: six principles for excellence

Area of Science:

• Hematology
• Oncology
• Patient Advocacy

Background:

• Chronic Lymphocytic Leukemia (CLL) is the most common leukemia in adults in Western countries, with increasing incidence.
• CLL is characterized by its complexity and highly variable clinical behavior.
• Effective management requires a holistic approach, recognizing patients as individuals beyond their diagnosis.

Purpose of the Study:

• To develop a charter outlining key elements of care and support for people living with CLL.
• To empower individuals with CLL to actively participate in their healthcare decisions.
• To advocate for the integration of patient-centered principles into healthcare systems globally.

Main Methods:

• Development of the charter involved input from patient advocacy organizations.
• Collaboration with people living with CLL to identify essential care needs.
• Consultation with clinical specialists to ensure medical relevance and feasibility.

Main Results:

• The charter highlights critical aspects of care and support that are most valued by CLL patients.
• Identified elements focus on holistic treatment and patient empowerment.
• The charter serves as a guide for improving the lives of individuals with CLL.

Conclusions:

• There is a global need to reform and enhance CLL care and support services.
• Governments, healthcare providers, and organizations are urged to adopt and embed the charter's principles.
• Integrating these principles into healthcare systems will improve the experience and outcomes for people with CLL.