Empowering cancer patients to deal with cognitive changes

Empowering cancer patients to deal with cognitive changes

According to Macmillan research, there are approximately 2.5 million people in the UK living with cancer, and this figure is estimated to rise to 4 million by 2030. With more and more people surviving and living longer with cancer, there is now a responsibility to help individuals to live well following treatment.

Tamsin Longley (CF 2018, left) developed the Emerging from the Haze programme with Clinical Nursing Research Fellow Sarah Stapleton (right). Download image
"As a result of the Churchill Fellowship, The Royal Marsden hospital was able to license one of the leading therapeutic interventions in cancer-related cognitive impairment from the USA."

For decades patients have reported cognitive difficulties, prior to, during and following treatment of cancer. Cancer-related cognitive impairment, or CRCI is characteristically mild to moderate and usually effects memory, attention, executive functioning and processing speed.

It is currently not clear the exact cause of the cognitive changes that occur in individuals with cancer. However, research indicates there are a combination of factors. These range from the cancer itself, the cancer treatment such as chemotherapy, hormone therapy and radiotherapy, cancer related fatigue, anaemia and hormonal changes to low mood, stress and anxiety.

According to research, up to 75% of patients experience CRCI with approximately 35% experiencing long-term cognitive affects that can impact their daily living activities and quality of life (Janelsins et al., 2011).

While patients have some idea of the side effects of cancer and cancer treatment e.g. loss of hair, nausea etc., a change in cognitive ability does not necessarily come into people’s minds. This can be terrifying and have an impact on their ability to work, socialise and perform daily roles such as cooking, driving and caring for family.

I am Senior Occupational Therapist in Oncology at the Royal Marsden Hospital Foundation Trust (RMH) and in 2018, I was generously awarded a Churchill Fellowship. I travelled abroad to Australia, USA and Canada to research specialist medical and research centres in order to gain a better understanding into the research and therapeutic interventions available for individuals experiencing CRCI following cancer and cancer treatment.

On completion of my Fellowship report, and with support from the Occupational Therapy department, RMH and the Royal Marsden Cancer charity, funding was secured to be able to develop an intervention programme for CRCI.

As a result of the Churchill Fellowship, The Marsden was able to license one of the leading therapeutic interventions in CRCI, the ‘Emerging from the HazeTM’ programme built by the brilliant Dr Arash Asher at Cedars-Sinai Medical Center in Los Angeles.

From this I was allowed to develop the Emerging from the Haze programme to fit a UK/NHS setting. This is the first programme of its kind to be delivered in the UK, it has been running now since April 2021 at the Royal Marsden Hospital and the results so far are promising, with over 100 people having been referred to the programme.

One participant said, "I’d like to thank Tamsin and Sarah for putting their hearts into creating such an important project and The Royal Marsden Cancer Charity for all their support. It’s made such a difference to my life and really helped with being able to use my brain more efficiently."

The programme is a 6-week online group programme led by myself with speakers from Physiotherapy and Dietitians to provide tools and strategies to understand and optimise cognition after cancer treatment.

In the course, different elements are addressed that may contribute to CRCI with a focus on education and how to manage, compensate and, where possible, improve the symptoms. The course addresses areas such as memory and attention, and how sleep, stress, mood, diet, and exercise can all have an impact on cognition. Each week participants are provided with self-management strategies to address these challenges.

I have also been fortunate enough to collaborate with a specialist research nurse in the field, Sarah Stapleton, to try and improve identifying, assessing, raising awareness and education for both the patients themselves and for staff. It is hoped that the project will increase awareness of CRCI and empower patients to recognise, report and self-manage some of their symptoms. The aim of staff education is to improve confidence when talking to patients about cognitive issues. This dual approach will help patients to deal with a very common and often troublesome symptom of their cancer and treatment.

To promote awareness and education, a feature on CRCI and the ‘Emerging from the Haze’ programme has been featured on the BBC World Service as well as in The Telegraph and Marsden magazine.

In addition, a podcast has also been recorded for Shine Charity to raise awareness of CRCI. I have also lectured at a number of study days to help raise awareness to healthcare professionals and have just returned from presenting a research poster at the International Cognition and Cancer Task Force conference in San Diego.

Going forward, I am hoping to continue to raise awareness and educate people on the subject and am currently looking into the feasibility of piloting the Emerging from the Haze programme to other NHS hospitals and centres to become more widely available within the NHS across the UK.

Disclaimer

The views and opinions expressed by any Fellow are those of the Fellow and not of the Churchill Fellowship or its partners, which have no responsibility or liability for any part of them.

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