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Knowledge is power: empowering breast cancer patients with joint decision-making

Erling Donnelly
Head of Oncology, Pfizer UK

27th October 2020 

The effect of breast cancer ripples across society, far beyond the individual receiving the diagnosis.

 

As the most common cancer in the UK, it impacts over 46,000 women and men each year, affecting their career, self-confidence and mental health.1,2 However, it also has a significant impact on family members who make extra trips to hospital, friends who provide much-needed emotional support, and spouses who find themselves as the sole source of income. No two people are the same, and, as such their priorities for cancer treatment should be based on individual circumstances. As the NHS Long Term Plan recognises, ‘what is the matter with someone’ is not always the same as ‘what matters to someone’.3 With this in mind, patients should be empowered to work closely with clinicians and provide input on which treatment will best suit their circumstances and lifestyles.  

Supporting individual cancer journeys

Earlier this year, Pfizer commissioned the think-tank Demos to quantify the ‘ripple effect’ of cancer and examine the social and economic impact of a diagnosis. The results were stark. The Cancer Costs report found that 48 per cent of cancer patients had to make structural changes to their working patterns because of illness.4 Women are particularly affected, with 55 per cent changing their working habits compared to just 40 per cent of men.4 It is clear that people require a holistic package of support that is tailored to their specific needs and circumstances. Some patients may prioritise continuing their career, whilst others may wish to fit treatment around childcare duties.

As a consequence of the COVID-19 pandemic, the NHS has implemented rapid guidance to enable greater flexibility in the delivery of cancer treatment.5 In order to ease the burden on hospitals and staff, some people with cancer have had access to repeat prescriptions, at-home treatments and the use of oral medicines where possible.5 Whilst these changes are certainly welcome, the impact of COVID-19 has restricted patients’ access to healthcare if they notice symptoms.6 This has led to a significant reduction in diagnosis and – for those with cancer – access to treatment.7 In fact, Cancer Research UK estimates that more than two million people in the UK are now waiting for screening, tests and treatment.8 This means that patients are less actively involved in their care plans. However, if patients are regarded as equal partners in decision-making, health outcomes are improved, quality of life is enhanced and services can be delivered more appropriately and cost-effectively.9 Therefore, as the NHS prepares its post-COVID recovery plans, it will be fundamental that patient choice and truly shared decision-making is prioritised from the beginning of a patient’s cancer journey.

 

Ultimately, decisions around care should reflect individual circumstances. To this end, it is important that prescribing decisions are made in consultation with the patient and are driven by their personal characteristics and circumstances"

Knowledge is power

As the saying goes ‘knowledge is power’, and this certainly rings true when facing a cancer diagnosis. At Pfizer, we believe it is vital that patients are empowered to jointly make informed decisions about their care. Part of being informed involves understanding their diagnosis and the treatment options, but it is not easy. According to a recent National Cancer Patient Experience Survey, just 77% of breast cancer patients ‘completely understood’ their diagnosis.10

One way that Pfizer is helping to provide clear information to patients is through our new ‘What’s Breast for Me’ initiative. Our aim is to educate people on secondary breast cancer and empower them to communicate their treatment goals with their doctor. We know, thanks to Breast Cancer Now’s chief executive Baroness Delyth Morgan, that people with secondary breast cancer may have a poorer experience of care than those diagnosed with primary breast cancer,  so a crucial element of the campaign is to encourage patients to speak to their doctor about what is important to them following a diagnosis. Whether this involves ensuring they can attend an important upcoming event or keeping active, we understand that providing tailored support can make a significant difference to a patient’s mental health.11

Ultimately, decisions around care should reflect individual circumstances. To this end, it is important that prescribing decisions are made in consultation with the patient and are driven by their personal characteristics and circumstances. While it is near impossible to quantify the impact of COVID-19 on cancer care across the UK, we must continue to work towards greater patient empowerment in spite of these challenges. Putting the individual at the heart of their own cancer journey is essential to helping people continue to live fulfilling lives with, and beyond, cancer.

 

References

  1. Office for National Statistics. Cancer registration statistics, England: 2017 April 2019.
  2. The National Center for Biotechnology Information. Self-confidence and quality of life in women undergoing treatment for breast cancer, Asian Pacific Journal of Cancer Prevention 2018
  3. NHS. The NHS Long Term Plan, January 2019.
  4. Demos. Cancer Costs: A Ripple Effect Analysis of Cancer’s Wider Impact January 2020.
  5. NICE. COVID-19 rapid guideline: delivery of systemic anticancer treatments April 2020
  6. The Lancet. COVID-19: impact on cancer workforce and delivery of care April 2020 
  7. The Lancet. The impact of the COVID-19 pandemic on cancer deaths due to delays in diagnosis in England, UK: a national, population-based, modelling study July 2020
  8. Cancer Research UK. Over 2 million people waiting for cancer screening, tests and treatment June 2020
  9. The National Center for Biotechnology Information. Patient involvement in health care decision making: A review, Iranian Red Crescent Medical Journal January 2014
  10. National Cancer Patient Experience Survey. 2019 national level breakdowns
  11. Breast Cancer Now. Breast Cancer Now comments on the National Cancer Patient Experience Survey 2016 results
PP-ONC-GBR-1615 / Oct 2020