How should I monitor a patient with CLL for disease progression and treatment response in primary care?

In primary care, monitoring a patient with chronic lymphocytic leukemia (CLL) for disease progression and treatment response primarily involves close communication with secondary care specialists, as CLL management and detailed monitoring are typically led by haematologists. However, the role of primary care includes:

• Recognising symptoms of disease progression such as new or worsening lymphadenopathy, fatigue, infections, or B symptoms (fever, night sweats, weight loss), and ensuring urgent referral back to haematology if these occur.
• Supporting management of treatment side effects and comorbidities, including prompt treatment of infections and monitoring for complications.
• Providing general health maintenance such as vaccinations (e.g., influenza and pneumococcal vaccines) to reduce infection risk.
• Offering psychological and social support and signposting to patient information and support groups.
• Ensuring patients have clear contact details for their haematology team and a named key worker for ongoing care coordination.

Routine laboratory monitoring and imaging to assess disease status and treatment response are generally performed in secondary care. Primary care should focus on holistic patient support, symptom recognition, and facilitating timely specialist review when indicated.

This approach aligns with NICE guidance on non-Hodgkin's lymphoma and haematological malignancies, which emphasises specialist-led monitoring and the role of primary care in supportive care and urgent referral for suspected progression or relapse ¹.