CLL Watch and Wait Patients 'Neglected and Anxious'

Liam Davenport

April 27, 2021

Chronic lymphocytic leukaemia (CLL) patients assigned to watch and wait are a "neglected cohort" who are given little support and experience high levels of anxiety, says an expert who argues that the condition needs redefining to remove those who will never progress from the burden of a cancer diagnosis.

"I think we need to understand in the clinic that when we tell people they have CLL, every action has a reaction,” said Professor Chris Fegan, director, School of Medicine, and consultant haematologist, Cardiff University.

"We're sending patients out of the room to deal with that reaction largely alone, especially in the watch and wait group of patients, and we simply need to do better."

He continued: "We are causing harm, we've failed the Hippocratic oath. And we must identify more ways of removing CLL patients from this classification of incurable blood cancer."

Prof Fegan was speaking at the British Society for Haematology 2021 Virtual Annual Scientific Meeting on April 26.

Few Expect a Cancer Diagnosis

Professor Fegan began by noting that a 2018 survey of leukaemia patients showed that, before visiting their GP, 32% of CLL patients had no symptoms and almost the same proportion thought there was nothing wrong with them.

Moreover, the GP referred 42% of the patients on a non-urgent pathway, "so either the GP doesn't think there's anything wrong or they think the potential diagnosis of CLL isn't particularly important".

The result was that 82% of patients were not expecting a cancer diagnosis and 66% did not know anything about CLL, even if they had heard of it.

A Reliance on Written Information

A more recent survey looked at more than 1152 CLL patients, of whom approximately a quarter started treatment straight away, half were initially assigned to watch and wait and then started treatment and "a quarter were on long term watch and wait".

Of those on watch and wait, regardless of duration, just under a third were offered access to a clinical nurse specialist, "and that doesn't get better over time," Professor Fegan said, adding that "once you don't see one at diagnosis, you don't see one later on...you're very much on your own".

Consequently, watch and wait patients are reliant on written information, but the quality of that information has an impact on their level of concern.

Among those given written information about watch and wait, 53% reported the information was easy to understand and they did not have any concerns, compared with only 10% of those given information who did not have any concerns but found it difficult to understand and 31% of those not given any information at all.

"By handing out information but not giving patients the opportunity to understand what the information means to them...we'd have done better not giving them information at all," Professor Fegan said.

Watch and Wait Patients More Anxious

Tellingly, 28% of patients who had started treatment said they had felt more positive since their diagnosis, but this fell to 16% among those who were initially on watch and wait, and 7% in those who continued on watch and wait.

"This doesn't make any sense at all, because you only start treatment if you've got progressive" or advanced disease, or symptoms, in addition to which the therapy will "potentially have toxicity, and despite that, they are more at ease and less anxious than in the watch and wait group of patients".

Professor Fegan continued: "In what other cancer would starting treatment make you feel better than not needing any treatment at all?"

A Fixation on Diagnosis and Treatment

He believes that doctors "fixate" on the diagnosis and treatment of CLL, and clinicians are "poor" at "concentrating on the individual".

"When we talk about personalised medicine these days we usually think about the right treatment for the right patient," Professor Fegan said, and for watch and wait this means managing patient anxieties and expectations of what it means for them, on a personal, family, and professional level.

The essential steps for managing watch and wait therefore mean getting the correct information to patients, offering psychological support, and advice on staying healthy through diet and exercise.

More importantly, it needs to be understood that when CLL patients are told the words chronic lymphocytic leukaemia, they hear "incurable blood cancer".

Stop Calling it CLL

And yet can CLL be cured? There is an array of treatments in addition to traditional chemotherapy, including small molecule inhibitor therapy, allogeneic stem cell transplant and the less well-established CAR-T cell therapy.

"So we haven't got many cures, but is that actually correct?" Professor Fegan asked, especially when watch and wait patients "don't need therapy".

One way of curing stage A watch and wait CLL is to change the definition, an example being the 2008 alteration from a lymphocyte count of ≥5.0 x 109/L to a B-cell count ≥5.0 x 109/L, which led to a 31.4% reduction in diagnoses of early stage CLL.

Another method would be to "stop calling it CLL," said Professor Fegan. "That's the way to cure it.”

Crucial to that is the realisation that for "a lot of stage A" patients, Professor Fegan said, "nothing ever happens to them; they don't progress; they don't need treatment; they don't die of CLL".

Raising the B-cell count required for a CLL diagnosis again to 11 x 109/L, for example, would remove a further 54% to 74% of patients from the burden of a CLL diagnosis, while telomere length could be used as part of CLL diagnosis, as 92% of those with long telomeres are still alive at 10 years, Professor Fegan stressed.

Moreover, next generation sequencing has shown that 100% CLL patients with no driver mutations are alive at 12 years, "but we've blighted an awful lot of their lives by using the term CLL, and given them this emotional baggage to carry with them".
 

Good Working Relationships

After his presentation, session co-chair Trevor Jones, British Society for Haematology lay trustee, asked Professor Fegan about the "dialogue between the hospital-based clinician and the GP in terms of better managing the pathway of patients from the GP to the clinic" and back again.

He replied that there needs to be a "really good working relationship between the primary and secondary care sector in this situation...which is phenomenally difficult when everyone us just so pressured at both ends of the system".

Professor Fegan continued: "It can work but I think it's rare in reality that we have these sorts of systems in place."

Summarising the session, co-chair Dr Stephen Hibbs, Department of Haematology-Oncology, Barts Health NHS Trust, London, said that "the question that comes out of this to us all as a haematology community is how do we take forward these things about trust, about understanding, about delineating where we're actually doing harm with the current diagnostic models we've got and the treatments we're doing?

"Is there something we can do as a society, as a community, to try and reduce some of the harms we're causing, and build up trust?"

No funding declared.

No relevant financial relationships declared.

BSH 20212 Virtual ASM: Abstract CLL Survivorship - watch and wait, the neglected cohort. Presented 26 April.

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