Palliative Care 'Should Be Given Early in CAR T-Cell Therapy'

Liam Davenport

April 30, 2021

Sophie was at university, in the second year of her undergraduate degree in biology, when she was diagnosed with acute lymphoblastic leukaemia (ALL).

It was 2018 and she had just turned 20. She started treatment straight away, and "there was no time to save any fertility or anything like that", she said.

A month later, a bone marrow biopsy showed she was not responding to the treatment. She was switched to a stronger regimen, which had "a bit more of an effect, but not as much as they would have liked", Sophie said.

The clinical team raised the possibility of a donor transplant. "Luckily for me, it was quite easy to find a match because I’m quite a common tissue type," she said. She was able to start her transplant just 5 months after her original diagnosis.

She "tried to stay positive, but the transplant really tested me", with vomiting from the start of radiation therapy "at least 10 times a day every single day for the next 2 months".

"I was just horrendously ill. I was on morphine because of the pain from the mucositis. I couldn’t speak, I couldn’t eat, I couldn’t drink...It was really hard to recover."

A Buzz on the Ward

After that, she was recommended to have chimeric antigen receptor (CAR) T-cell therapy. "It was pretty scary because I couldn’t find anyone else my age who’d actually had the treatment," Sophie said, "so I didn’t really know what to expect.

"You’re obviously given the paperwork and the details of potential side effects and all sorts of things like that, but I didn’t actually have a person to go to and say: What was your experience?"

She wasn’t even told that she was definitely having it until a nurse started taking "about 20 bottles of blood". When the nurse explained it was for the CAR T-cell therapy, "I looked at my mum and said: Oh, we’ve got it, then".

It was a less taxing experience than the transplant, which was reassuring as her "biggest fear" was that she was going to have "the same horrendous experience that I’d had before".

She was admitted to hospital for the treatment on her 21st birthday, "so they gave me Room 21", they decorated her room, and she "had the cells the next day".

She was the first person to have CAR T-cell therapy at the hospital, so there was a "buzz" on the ward.

Her blood pressure dropped dramatically, and she was admitted to intensive care as a precaution, but she felt "better straight away". Now, at 22 years of age, she is fully recovered and studying for her master's degree in haematology.

Be There for Us

Reflecting on her experiences with Helen McNaught, clinical trials nurse adviser, Blood Cancer UK, at the British Society for Haematology 2021 Virtual Annual Scientific Meeting, she had some advice for healthcare professionals administering CAR T-cell therapy.

"Just listen to what we’re saying," she said, and "be there for us".

"It’s a scary time," Sophie added and, when she had the treatment, "there weren’t many people who you could ask" about things "you’re not sure about".

In the following presentation, Debbie Yeatman, nurse specialist, Bristol Royal Infirmary, took up the theme of support for patients undergoing CAR T-cell therapy.

She explained that CAR T-cell therapy was approved by the National Health Service in 2018 for patients with refractory or relapsed ALL aged under 25 years and in whom "all other therapies had been unsuccessful".

It was also approved for relapsed diffuse large B-cell lymphoma, and was authorised for use in10 centres in the UK.

Ms Yeatman noted that there is a "high risk of life-threatening complications, such as cytokine release syndrome and neurotoxicity, and also there is always the potential for relapsed disease".

Unfortunately, patients are "often referred too late in their treatment pathway" for supportive and palliative care, and so they "may not get the opportunity to discuss their priorities and wishes while they are well enough to do so".

Pilot Project

Ms Yeatman presented the results of a pilot project to include supportive and palliative care as a specialist support alongside CAR T-cell therapy, with a focus on advanced care planning, symptom management and emotional and psychological support.

Researchers enrolled 11 patients referred for CAR T-cell therapy, of whom eight went on to have the treatment. The patients completed a survey and a total of 36 ward reviews were undertaken.

The results showed that all patients felt they’d had enough time with the palliative care clinical nurse specialists, and had the opportunity to discuss treatment priorities.

Patients appreciated the nurses having specialist knowledge of symptom control, and "not feeling rushed" when discussing their needs, she said. They also felt supported, able to explore uncertainties and plan for the future.

There were areas for improvement, such as providing more information about support and palliative care in advance, as well as access to the service at a later date, if required.

Nevertheless, Ms Yeatman believes that "robust early supportive and palliative care in parallel with CAR T-cell therapy work-up...would be beneficial", delivered as a joint clinic.

The success of the pilot project suggests they could extend the approach to other interventions, such as bone marrow transplant, which would be "particularly useful" as the adverse effects are "often far more complex and can last long-term".

No funding declared.

No relevant financial relationships declared.

BSH 20212 Virtual ASM: Abstract Advanced Care Planning. Presented 26 April.


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