Chronic lymphcytic leukaemia: Improving treatment and support for patients

This feature has been funded by Janssen UK and written on the company’s behalf by M&F Health, based on an interview with Advanced Nurse Practitioner, Karen Stanley. The views expressed here are her personal opinions.Logo

Chronic lymphocytic leukaemia (CLL) is the most common haematological malignancy.1
Cancer Research UK reports that, on average, 3,789 people were diagnosed with CLL each year between 2014-2016 in the UK.2  During 2016, 1,008 people died from CLL in the UK.2  However, according to Karen Stanley, Haematology Advanced Nurse Practitioner at Guy’s and St Thomas’ NHS Foundation Trust, London, the next generation of treatments targeting specific abnormalities that drive CLL’s survival and growth have transformed current patients’ prospects.

“It’s a really exciting time to work in CLL,” Karen says. “The changes in the outlook for CLL patients during the last 10 years have been phenomenal. We now have effective treatments with acceptable toxicity, even for historically difficult-to-treat mutations. If diagnosed a decade ago, people with CLL would not have survived, however they are now living for longer with a good quality of life. These advances have helped raise awareness amongst the public, and as a result of science and research developments, nurses are also more knowledgeable about CLL.” Karen notes that some basic nursing practices remain the same, including working as part of a multidisciplinary team (MDT), involving patients in treatment decisions and developing strong, individualised therapeutic relationships.

How can nurses help patients come to terms with being diagnosed with CLL?

“CLL is often an incidental finding, before surgery or perhaps during a routine blood test, and the majority of patients are generally asymptomatic,” Karen says. “Being diagnosed with CLL, as with any cancer, often comes as a shock. Many patients associate the word ‘leukaemia’ with the tragic childhood cases they’ve seen in the media. After being told that they have a cancer, many people don’t take much else in during the initial consultation. Part of the role of the Clinical Nurse Specialist is to spend time with the newly diagnosed patient after their diagnosis is given by their Haematologist giving them the time to ask questions and to discuss and explain the diagnosis and management plan again.

“Delivering a consistent, reassuring message is important. We often liken CLL to a chronic disease that needs regular monitoring. A point of contact, which is often a nurse, that patients can rely on is essential. We find that consistency in the information given and the provision of a reliable point of contact allows us to help gain patients’ trust thereby forming the basis of a good therapeutic relationship which is critical given that CLL management often lasts many years.

“Many people, however, find that living with the uncertainty surrounding CLL is difficult. We signpost patients to other sources of advice and support, including Bloodwise, Leukaemia Care and the CLL Support Association.

“Peer-support groups are invaluable. A healthcare professional can only guess what it’s like to live with CLL. Support groups allow people to speak to others with CLL, which can help with the stress that’s associated with the diagnosis, finding a new normal and living with uncertainty.

“While our advice is individualised, we encourage all CLL patients to tell their family, friends and employers, although this can be a difficult conversation especially with children. Some people keep the diagnosis to themselves as they don’t want family and friends to worry. But family and friends are an important source of practical and emotional support. Bringing someone to the clinic can be a great help too. Most employers when made aware of the diagnosis can be flexible over working hours, it is important to recognise that as CLL patients are immunosuppressed, they may need more time off work to recover from infections and viral illnesses than their colleagues.”

Most CLL patients are not prescribed a drug when diagnosed. How do patients react to active surveillance and how can nurses help?

“Many people are surprised when active treatment isn’t needed at diagnosis. We are all very aware of the recent NHS campaigns in the media stressing the importance of diagnosing and treating cancer as early as possible to achieve best possible outcomes. Yet, some people with CLL never need treatment.

“Most CLL patients – especially older people – seem relieved that they don’t need immediate treatment for their leukaemia, however, some patients, typically younger people, need additional discussion to appreciate why there is no need for treatment at this stage. We reinforce the importance of regular monitoring to detect any changes in blood counts and any other signs and symptoms of disease progression. It can also be helpful to draw comparisons for example with prostate cancer and which most patients will have heard of, because just like CLL, many prostate cancer patients are on active surveillance rather than treatment.  

“Some people refer to active surveillance as ‘waiting and worrying’. They may become concerned that any lymphadenopathy (inflammation of the lymph nodes, that might occur with a cough or cold), could mean that their CLL is progressing. We notice an increase in the number of patient contacts during the Autumn and Winter months as respiratory infections circulate more widely in the community. By reminding the patient of the role of the nurse specialist as a point of contact we encourage them to call us if they have any questions or concerns. Again, establishing a good therapeutic relationship and a reliable point of contact early on with the patient allows you to offer reassurance, ultimately helping them to cope better.

How involved can CLL patients be in treatment decisions and what is the MDT’s role?

“CLL management is increasingly protocol-driven, based on NICE recommendations. Nevertheless, patients must be fully involved in every treatment decision and each case should be discussed by the MDT as part of best practice. The MDT allows us to discuss ‘difficult’ cases as well as ratifying the treatment for more typical cases. Discussions may encompass blood markers, symptoms and imaging. Even in smaller centres, the Cancer Nurse Specialist is a core member of the MDT and integral to the decision making around appropriate treatment strategies for individual patients.

“CLL does not tend to progress suddenly. Blood counts usually decline over several months, offering people the chance to prepare for treatment and discuss the options fully, including how testing for mutations in the cancer cells can help guide the choice. Indeed, discussing any mutations and the treatment implications is part of informed consent.

“As Nurses we need to tailor discussions to each patient’s level of understanding and individual preferences. Patients vary widely in their understanding of disease and cytogenetics. Some want in depth explanation and discussion; others want to simply know that we’re looking at their cells to see which treatment is likely to be the most effective.

“According to Cancer Research UK, people with a first-degree relative with CLL have a six to nine times increased risk of developing the malignancy. It is important to stress that the cytogenetic tests are specific to the cancer cells and not the patient, as some people believe that the genetic test determines the risk of passing CLL to their children, it is important that we therefore explain cytogenetic testing thoroughly.

Are General Practitioners (GPs) involved as part of the MDT?

“GPs play an incredibly important part of the MDT, despite sitting in the primary care setting and not being present in multidisciplinary team meetings. After initial diagnosis, many patients with CLL are managed by their GP until perhaps something changes, for example their lymphocyte count rises, or they become symptomatic, at which point they are seen more frequently by their CLL specialist team. We try to support building relationships between CLL patients and their GP to ensure appropriate interventions are made as required, to avoid unnecessary or lengthy periods of illness or infection.

“After diagnosis, we write a consultation letter with specific information and advice for the patient and their GP. This letter includes details about how patients with CLL have an acquired immunodeficiency so it’s important they receive the annual influenza vaccine, but avoid live attenuated vaccines such as the shingles vaccine. We also flag that patients with CLL often need antibiotics for infections that do not resolve quickly, and for this we recommend early use. We try to educate patients, so they know the symptoms to look out for that might indicate that the disease is progressing and what to do if these symptoms present, as well as highlighting the increased risk for other cancers such as skin cancer, and how to protect their skin to reduce exposure to the sun.

“We put these measures in place to ensure the patients and the entire MDT, including GPs, are well informed. We recognise our colleagues working in primary care are integral to the management and support of patients. By actively involving and updating GPs we can make a huge impact on keeping CLL patients well and leading a normal life for as long as possible.

What is the most effective and efficient method to assess the emotional wellbeing of patients living with CLL?

“A consultation with the Clinical Nurse Specialist offers a safe space for patients to discuss their concerns. Everyone with CLL has individual emotional and psychological responses and faces different issues. Nurses can establish trust early on and give people ‘permission’ to discuss emotional, sexual, social, financial concerns along with any other issues. People tend to be more open with a Cancer Nurse Specialist than with a consultant. Although discussing these issues may take time, catching problems early may avoid a crisis later.

“Offering each new patient a formal Holistic Needs Assessment gives them both the opportunity and permission to disclose any concerns. Locally we perform a Holistic Needs Assessment within a month of diagnosis and again when patients are starting or changing treatment.

What advice would you give to other Cancer Specialist Nurses when supporting a patient with CLL?

“We have the medicines and science now to effectively treat CLL for a long time, something that just wasn’t possible ten years ago. What is most important now is maintaining a high quality of life for these patients, and that requires building strong relationships with all members of the MDT, including GPs. We must ensure they are equipped with the knowledge to keep their patients well by reducing the risk of infection as much as possible and helping patients to feel confident about discussing potential symptoms that may indicate disease progression. By being easily contactable and reliable, providing ongoing support, advice and education to patients Clinical Nurse Specialists can empower their patients to self-manage helping them regain a sense of control over their future.


1.  UCLH Cancer Collaborative. Pan-London Haemato-Oncology Clinical Guidelines. Available at: https://www.kingshealthpartners.org/assets/000/002/395/PanLondon_CLL_Guidelines_Sept2018_v2_original.pdf?1537972690. Last accessed January 2020.
2.  Cancer research UK. Chronic lymphocytic leukaemia (CLL) statistics. Available at: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/leukaemia-cll. Last accessed January 2020.

Date of preparation: January 2020
Job code: CP-132784