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The University of Southampton
Health Sciences

Transforming care and improving the lives of cancer survivors

The School of Health Sciences’ Macmillan Survivorship Research Group has transformed our understanding of what constitutes effective care for cancer survivors. Research by the Group has significantly changed healthcare policy and practice, creating personalised care systems that respond to patient need and optimise limited resources.

Context

Half the UK population will develop cancer, and half of those diagnosed will live for more than 10 years. Traditional aftercare – a one-size-fits-all approach based on routine appointments – is unsustainable and ineffective at meeting the increasing complexity of survivors’ needs.

Research challenge

Led by Professor Claire Foster, The Macmillan Survivorship Research Group focusses on answering two high-priority questions:

1. How does cancer and its treatment impact on people’s daily lives?

2. How can people be supported to manage this impact?

Since 2004, through a series of grants including a total of £5.2m from Macmillan Cancer Support, the Group’s research has been the first to involve cancer patients with the aim of understanding the problems they face before, during, and after their treatment.

ColoREctal Well-Being (CREW) study, 2009-2018

The CREW prospective cohort study followed more than 1000 newly diagnosed colorectal cancer patients for 5 years throughout and beyond their curative treatment.

30% of participants had poor health and well-being up to 5 years later. Clinical levels of depression and low confidence to self-manage pre-treatment were as important as disease stage for predicting long-term health and well-being recovery

The findings significantly contributed to guidance around ‘prehabilitation’ – enhancing a patient's functional capacity before surgery – by Macmillan, NIHR and the Royal College of Anaesthetists. They also informed quality standards for developing, implementing and measuring self-management support in Ontario, Canada.

CREW evidence has been used by Health Education England and Macmillan to develop and deliver core competencies and learning requirements for Allied Health Professionals, nurses and the wider workforce in the UK.

It has also been used by Macmillan and the Wessex Cancer Alliance to understand the impact of COVID-19, informing strategic responses to the pandemic.

Patient Triggered Follow-up (PTFU) study, 2011-2014

The PTFU study redesigned services for 700 patients with less complex needs at University Hospital Southampton (UHS), who had completed curative intent treatment for breast, colorectal or testicular cancer. Around 100,000 new cases are diagnosed in the UK each year, and the traditional routine follow-up model was unsustainable.

PTFU involves remote surveillance via an online patient portal, and self-management support via a workshop. The study found PTFU to be acceptable to patients and a realistic alternative to traditional aftercare.

Subsequently, in 2014, UHS introduced needs assessments into the clinical pathway from diagnosis to tailor support during treatment, with better access to the nursing team and support workers. This has benefited an estimated 80% of breast, 95% of testicular and 50% of colorectal cancer survivors in Southampton, where 67,500 new cases are diagnosed each year.

The Trust has since extended this approach to include people with lymphoma, endometrial and prostate cancer.

TrueNTH UK (2014 – 19)

Research by the Group was influential in the Movember Foundation’s decision to commit $28 million to improving the lives of prostate cancer survivors.

As part of this initiative, Professor Alison Richardson led TrueNTH UK, a national supported self-management study to extend PTFU and adapt, evaluate and scale self-management support for men with prostate cancer. Prostate cancer affects around 330,000 men a year in the UK, and this is expected to double by 2030. It is therefore crucial to develop cost-effective care models.

The study developed a supported self-management care model in five NHS hospitals, involving 2,500 men with prostate cancer. It included a workshop for patients, support from cancer support workers, and access to an online patient portal that linked men to their care team. This provided real-time access to test results, replacing the need for expensive hospital-based follow-up appointments.

RESTORE digital support, 2010-2016

Led by Professor Claire Foster and co-produced with patients, clinicians and Macmillan Cancer Support, RESTORE aimed to increase confidence to manage fatigue after treatment.

RESTORE provides information on fatigue, supports goal setting and shares learning. A randomised controlled trial, involving 12 hospitals and 163 patients, found RESTORE improved confidence to manage fatigue.

Macmillan launched RESTORE in October 2019, providing the first free evidence-based digital resource for managing cancer related fatigue for patients and health professionals. The study showed 77% of users had increased confidence to self-manage fatigue after using RESTORE.

Associated projects

The ColoREctal Wellbeing (CREW) study

RESTORE - supporting people living with cancer related fatigue

Macmillan CREW Cohort

RESTORE

Key Publications

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