The needs of blood cancer patients are unique – treatment should be too

Posted On: 
19th November 2018

As NHS England develops their ‘quality of life metric’ for cancer patients, AbbVie’s Pete Williams says it is essential to ensure the unique experience of blood cancer patients is taken into account.

The last 2 decades has seen unprecedented scientific progress against cancer with survival rates for many cancers improving throughout the world during the first 15 years of the 21st century.

In certain cancers survival rates have increased at a staggering pace and this success has been due to a number of factors including significant advances in technology and a greater understanding of cancer biology resulting in more detailed descriptions of a patient’s cancer and better targeted treatments.

This progress means that there are new challenges for patients and there now needs to be a greater focus on ensuring people with cancer are able to live with the highest quality of life possible.

There are currently 2 million people in the UK living with and beyond cancer. Evidence suggests that just because people with cancer are living longer this does not necessarily mean they are living well. According to research from Macmillan at least 1 in 4 of them face poor health or disability after treatment.

Thankfully this is a key focus for NHS England and England’s National Cancer Strategy recognised that understanding what matters most to patients and ensuring that services are centred around patients’ needs is key to improving outcomes. It therefore recommended the introduction of a quality of life metric to ensure “continuous improvement in long-term quality of life”. The proposed metric is currently being trialled in a series of pilot sites across the UK, measuring the experience of people affected by breast, colorectal and prostate cancer.

However, one area where the pilots do not consider is how the unique needs of people with blood cancer are addressed. Every 20 minutes someone in the UK is diagnosed with a blood cancer such as leukaemia, lymphoma or myeloma. There are 26 new cases of leukaemia diagnosed in the UK every day, equating to approximately 9,500 new cases each year.

Whilst solid tumours can be treated by an immediate intervention or single surgery, people affected by blood cancer, and chronic lymphocytic leukaemia (CLL) in particular, have to learn to live with their condition for the longer-term. For example many patients diagnosed will not be recommended a treatment. They will be put on a ‘Watch and Wait’ period which involves regular blood checks and examinations until treatment is required. Some people with CLL find the ‘Watch and Wait’ period difficult because they would like treatment to start as soon as possible.

In view of the difference in patient experience of people affected by blood cancers and those affected by solid tumours, AbbVie believes that there is a need for consideration of whether the findings from the pilots are applicable to blood cancer patients.

To ensure that the unique experience of CLL patients is taken into account in the development of the new metric, AbbVie has recently carried out a listening exercise amongst the blood cancer patient community to understand what matters to CLL patients. This exercise has found that CLL patients face a number of significant challenges to their quality of life including psychological, fatigue and impact on family life.

AbbVie will shortly be publishing the full findings from those conversations alongside clear recommendations to ensure that blood cancer services are designed around the needs of those affected and their families. We look forward to discussing this with the cancer community.

 

From diagnosis to recovery, blood cancer is different to other types of cancer. Chair of the Blood Cancer APPG Henry Smith says it is vital that the wider medical profession understand these difference. Read the full article here.