Every year, the British Society of Haematology (BSH) holds a scientific conference, bringing together everyone working in haematology to discuss the latest information. In this article, our Advocacy team give you a flavour of what was discussed and why these sessions are important to blood cancer patients.
Improving patient care through the way we talk
One of the sessions that stood out this year focused on how linguistics (the science of language and how we understand each other) can inform haematology practice. It highlighted that in the haematology setting, nurses and doctors are very happy to use complicated language when they are speaking about important and fundamental parts of someone’s diagnosis and treatment. However, the session showed that they should reconsider this.
The speaker, Dr Amy Cooper, highlighted a study from Public Health England that found that 42% of working age adults were unable to understand or make use of everyday health information. This goes up to 61% when numbers are also added into the information. To illustrate this, the speaker had asked a group of non-medical people what ‘acute’ meant, and the predominant answers were ‘small and tiny and very minor’. Compare this with the medical definition of acute, which is ‘a disease of rapid onset and severe symptoms’, something many of our acute patients will know very well.
She also asked people if they knew what a registrar was; the predominant answer was ‘someone who registers people into the hospital’, or they could only relate it to a registrar at a wedding. A registrar is actually a training doctor in their chosen speciality. This highlights that there is still a big communication gap between health professionals and patients because of the language being used. This may somewhat explain why some people may find it hard to accept or understand a diagnosis of ‘acute’ leukaemia, if they do not know it is a serious condition. Long-term problems may develop if health professionals continue to use medical jargon and they should instead try to have meaningful conversations with their patients at a level they understand. It may cause difficulty in accepting a diagnosis and the person may be unable to assess the impact of their diagnosis on their work and relationships. They may have difficulty explaining their diagnosis to family and friends or they might not take their medication as they should (this is called ‘compliance’).
Using complicated words and ‘jargon’ means that patients are often denied the opportunity to join in the conversation. If health professionals can adapt their language, they can ultimately improve patient care and outcomes.
Do you have questions about your care? Have you been recently diagnosed and are struggling to understand your blood cancer? Call our helpline 08088 010 444 or email email@example.com for further help.
Of course, you couldn’t have a virtual conference in a pandemic without mentioning the impact of COVID-19 upon patients. Since the vaccination programme started in the UK, Leukaemia Care has heard from many patients and their loved ones who are concerned about their responses to the vaccine. Thankfully, research has stepped up increasingly in this area.
One abstract at BSH, presented by Ji Zheng of University College London, described the experience of nine patients diagnosed with acute leukaemia (five acute myeloid leukaemia patients, three B-cell acute lymphoblastic leukaemia patients and one T-cell ALL patient) and infected with COVID-19. This presentation was based on a letter written in the journal Nature, which you can read in full here: https://www.nature.com/articles/s41375-020-01103-2.
This is a small population, but data in these patients is lacking due to the majority of patients shielding and so thankfully not getting infected with COVID-19. Thankfully, everyone survived COVID-19, and all but two had mild cases. Interestingly, five people were diagnosed with leukaemia at the same time as their COVID-19 diagnosis.
The antibodies of these nine patients were studied and compared to the response of otherwise healthy people with COVID-19, to see if the acute leukaemia patients produced a similar immune response. Seven of the patients produced antibodies to COVID-19; one of the people who didn’t produce antibodies had symptoms of COVID-19 but never actually tested positive with a PCR test. This is similar to the number of healthy people that would be expected to produce antibodies. Additionally, most of the patients also made antibodies that were shown to be functional, which means they would prevent future infection with COVID-19. The patients who had the best antibodies were those who had the most severe COVID-19, a finding which has also been shown to be true in healthy people with COVID-19.
Whilst this is good news that patients were able to produce functioning antibodies, there were some differences observed compared to people without blood cancers, including that the patients were slower to make the antibodies. This shows that you cannot judge an immune response on number of antibodies alone – there are many variables. The authors of the paper note that much more work is needed in different blood cancer types and bigger populations to truly understand how patients respond to COVID-19 infection and/or the vaccine programme.
Updates in CLL
Watch and wait – the neglected cohort
There are many blood cancers that do not require immediate treatment in a large proportion of people who are diagnosed. These conditions, such as chronic lymphocytic leukaemia (CLL), often do not present with symptoms and may never develop into symptomatic illness. This session explored how to balance the harm of receiving a chronic blood cancer diagnosis with benefits of support that can come with a cancer diagnosis.
Professor Chris Fegan, of University Hospital Wales, explored the diagnosis of early stage CLL. This group are given a diagnosis of leukaemia and prescribed ‘watch and wait’ or active monitoring. Not needing treatment clearly avoids side effects and physical illness that treatment causes, but comes with emotional and psychological challenges for the patient in adjusting to and coping with a cancer diagnosis. This often goes unrecognised, and these patients lack support as a result.
Professor Fegan presented a lot of evidence of patient challenges whilst on “watch and wait”, including statistics taken from Leukaemia Care’s 2018 ‘Watch Wait Worry’ campaign findings. At diagnosis, 32% of CLL patients hadn’t encountered any symptoms and 28% didn’t think anything was wrong prior to visiting their GP. Similarly, 42% were referred by a non-urgent pathway to haematology, suggesting GPs did not suspect cancer either. This may explain why 82% of these patients were not expecting to be diagnosed with cancer and why half (51%) were by themselves at diagnosis. A cancer diagnosis is shocking at the best of times, let alone when you have no symptoms and no hint you are unwell.
The survey showed that poor information about watch and wait stops patients from fully understanding the nature of their condition. The words ‘chronic’ and ‘leukaemia’ communicate a perceived meaning of ‘incurable’ and ‘cancer’; how this is explained at diagnosis is important. Doctor-patient communication is critical to help patients understand their diagnosis.
Half of CLL patients diagnosed were put on “watch and wait”, but only one third had access to a clinical nurse specialist for support and information. Two years after diagnosis, 50% of “watch and wait” patients are still thinking about their diagnosis and disease every day, with a reduced quality of life and emotional wellbeing.
As well as CLL patients having concerns about watch and wait, Professor Fegan also spoke about how we need more information on who will progress, and perhaps how that could change patients’ experiences of diagnosis.
The definition for diagnosis of CLL changed in 2008, to require that there has to be greater than 5×109 (5 billion) B lymphocytes per litre of peripheral blood, and the person should have this amount in their blood for at least three months. This raised the bar for a diagnosis of CLL, increasing the number of cells you have before you get a CLL diagnosis, rather than a diagnosis of a non-cancerous condition instead. Yet many patients given a CLL diagnosis since 2008 still don’t progress. Professor Fegan wondered why this was the case and pointed out that, if we can work out who will actually need treatment for CLL, then we can stop diagnosing those who will never progress with CLL. This should spare them the psychological impact of a cancer diagnosis.
Professor Fegan proposed raising the defining B-cell count to 11×109 per litre, and also doing more testing at diagnosis to find out more about the biology of the disease. Today, testing is available to determine genetic factors that can be used to predict how people will progress over time, thanks to next generation sequencing of genomes. The OxPLoreD (Oxford Pre-Cancerous Lymphoproliferative Disorders: Analysis and Interception) study is one example of work to identify the genetic mutations that determine outcomes. This should help future treatment decisions and in time this will reduce those unnecessarily diagnosed with early stage CLL. Leukaemia Care are supporting this study.
This session emphasised that CLL diagnosis may appear straight forward to the doctor, but not always for those who are being diagnosed, especially if they are put on “watch and wait”. The importance at diagnosis is not just that doctors follow guidelines, but that they help patients with managing their expectations and understanding what diagnosis means. Appropriate information and timely support is key to wellbeing when people are diagnosed.
To find out more about the Watch, Wait, Worry campaign, contact the advocacy team by emailing firstname.lastname@example.org.
Updates in AML
There are exciting developments for adult patients with acute myeloid leukaemia (AML). Here we outline two sessions.
New therapeutic options in older patients with AML
Outcomes in older AML patients are normally less favourable than people who are diagnosed at a younger age. This needs addressing as AML is actually most common in people over the age of 70. As people get older, there are many reasons why people are less able to cope with intense chemotherapy. The biology of AML is different in older people, meaning it has different genetic mutations and responds differently to treatment. This group are more likely to be affected by secondary AML (AML caused by treatment for a different cancer) and AML with mutations in a gene called TP53. Both types of AML are less responsive to treatment.
Several new treatment options have been developed that are proving to improve outcomes for this group. The key one mentioned by Professor Vyas was venetoclax with azacitidine. This treatment is not yet approved for use on the NHS by NICE, but the appraisal is under way and this may come available to some types of patients on the NHS soon. Leukaemia Care are participating in this appraisal.
The biggest area of need in AML is for treating AML with certain genetic mutations, including TP53 mutated and FLT3 mutated AML effectively. Professor Vyas talked about combinations of new drugs with azacitidine that are showing promising results in clinical trials. One example is gilteritinib, which is currently in use for relapsed AML. It is also now being tested in trial with venetoclax or with azacitidine or even with venetoclax and azacitidine together, and it is hoped this will be coming to the UK very soon. Clinical trial data from these studies is promising across all patient groups.
Another example of a new treatment is immune checkpoint inhibitors which are treatments that block signals in leukaemia cells that allow AML to survive. A new drug, magrolimab, is very effective at blocking the “don’t eat me” CD47 signal on the surface of AML cells, a signal that usually prevents the immune system from detecting and destroying AML cells. Magrolimab with azacitidine is also in a clinical trial in newly diagnosed AML patients and response rates in all groups are very encouraging, even those with genetics that make AML harder to treat, such as in patients with TP53 mutations. Patients also respond better the longer they are on treatment. Magrolimab plus azacitidine may even be more effective that venetoclax.
Professor Vyas said that clinical trials of all these treatment combinations will be coming to the UK within the next 12 months. They should provide more options for treating AML patients over 70 years old or in other groups who cannot have standard chemotherapy.
Using MRD to Optimise Treatment in AML – Professor Sylvie Freeman University of Birmingham
Minimal residual disease (MRD) is a term used to describe the number of cancer cells that remain in the body after treatment. An MRD test can detect leftover cancer cells at a very low level in the blood, allowing doctors to know how many cancer cells have been removed. MRD positive means that disease was still detected after treatment, but not enough cancer cells are left to be classed as a relapse. Doctors can use MRD to measure the effectiveness of treatment and to predict which patients are at risk of relapse. You can read more about MRD here: https://media.leukaemiacare.org.uk/wp-content/uploads/MRD.pdf.
Professor Freeman explained the increasing use of MRD measurement in the UK determines risk in AML, and how use of MRD is now becoming an established marker that doctors look for, helping them to decide the best treatment in AML. The UK is leading this work, as we are lucky to have access to a lot of testing in the NHS system, compared to other healthcare systems.
UK patient participation in clinical trials has contributed to information showing a strong correlation between MRD status and predicting outcomes in AML. This means that patients can be tested for MRD and whether they test positive or negative will give doctors a good idea as to how well they are likely to do in the future. The strongest connection so far is a connection between MRD after initial high intensity chemotherapy or before transplant and a person’s chances of relapse. Professor Freeman showed evidence that a single MRD test at three months post-transplant is helpful to determine future relapse. Unfortunately, MRD positive patients have the same poorer prognosis as patients who are treatment refractory (i.e., those who never fully responded to treatment). Studies also show being MRD negative can be used to prevent people who are doing well from being over-treated too.
Professor Freeman believes that all aspects of treatment can be informed by MRD testing. However, what the result of an MRD test means will also depend on the subtype of AML a person has, so the full picture is needed, not just the MRD status.
This session has shown how close we are to making better use of MRD testing in the UK to treat AML. Although there is much evidence to show the correlation of MRD status to chance of relapse, more data is needed.
If you have any questions about the findings presented at BSH, contact our Advocacy team by calling 08088 010 444 or emailing email@example.com.