Bridging the gaps in supportive cancer care

Professor Eila Watson

Research by Professor Eila Watson and the Supportive Cancer Care Research Group (SCCRG) at Oxford Brookes University has significantly improved the experiences and health outcomes of people living with and beyond a cancer diagnosis locally, nationally, and internationally.

Studies into the consequences of diagnosis and treatment of prostate, pancreatic and pelvic cancers have positively influenced policy, practice and service development, improving quality of life for patients and their families.

Living beyond cancer

Improved cancer screening and treatments, coupled with an ageing population means that more people are being diagnosed with cancer, and living for longer.

An estimated four million people are predicted to be living with and beyond cancer by 2030, bringing an urgent need to understand the wide-ranging short and long-term physical, psychological and social consequences of diagnosis and treatment on patients and their families, so that appropriate monitoring, care and support can be provided.

Internationally renowned in cancer survivorship research, the SCCRG worked with three leading cancer charities to provide key evidence to inform their strategy, recommendations and service provision in this area.

Improving the experiences of men with prostate cancer

Around 48,500 men in the UK are diagnosed with prostate cancer every year, meaning one in eight can expect to get a diagnosis during their lifetime.

Carried out on behalf of the charities Prostate Cancer UK (PCUK) and Movember, Life After Prostate Cancer Diagnosis surveyed 35,823 men in the UK who were between 18 and 42 months post-diagnosis about their quality of life, psychological wellbeing, and social and financial situation.

The study found poor sexual function was very common, but more than half received no intervention for it. Findings also highlighted the negative impact of androgen deprivation therapy (ADT), compared to other prostate cancer treatments, on quality of life, and that approximately one in five men later regretted the treatment choice they had made.

The research has been used by the charities to influence policy-makers and to lobby for improved services for men diagnosed with prostate cancer. Toolkits presenting individual NHS trust-level patient outcomes data alongside national comparisons were presented to all 111 NHS trusts that took part in the study. As a result of the findings, PCUK is exploring variation in the use of ADT and how to ensure men receiving this treatment are well supported. In addition, they undertook an investigation into how treatment decision-making can be better supported.

Data from the study was also used by Movember to populate an interactive, web-based tool for use by patients. Men Like Me enables men with prostate cancer to explore outcomes for men with similar characteristics and who had similar treatment, thus helping them to understand what to expect after diagnosis and treatment, make an informed decision about treatment options, and know where to seek help for side effects. The charity also funded an online self-management programme for people living with prostate cancer including an e-resource on maximising sexual wellbeing.

Supporting people with pancreatic cancer

Patients with pancreatic cancer generally have poor prognosis and significant needs.

In 2017, on behalf of Pancreatic Cancer UK, the SCCRG undertook the first UK survey exploring the supportive care needs of this patient group. Its findings highlighted significant unmet needs in psychological care and support for patients and their families, particularly in patients who were not eligible for surgery. Just less than a third (29%) felt they did not receive enough information at diagnosis, and one in ten felt excluded from decisions about their treatment.

The research was presented to the All-Party Parliamentary Group on Action against Cancer and the National Cancer Patient Experience Advisory Group, who are using it to inform workstreams in the NHS Long-Term Plan on health and wellbeing support, and early diagnosis.

The findings were also used by Pancreatic Cancer UK to develop a training course for nurse specialists addressing the psychological impact of diagnosis, as well as further learning on dietary management and nutrition.

Surfacing long-term consequences of pelvic cancer treatment

Research by the SCCRG on behalf of Macmillan Cancer Support highlighted the long-term and late consequences of radiotherapy to treat pelvic cancers.

The study found that problems with chronic fatigue, bowel and urinary problems including incontinence, pain and sexual difficulties were relatively common, and just as frequent in the six to 11 years post-treatment as in the first five years after radiotherapy.

This research was cited in the charity’s influential 2013 report ‘Cured – but at what cost?’, which led to the establishment of the Macmillan Consequences of Treatment programme, which has been significant driver in shaping cancer survivorship policy, practice and research in England ever since. The importance of addressing the consequences of treatment is now highlighted in national cancer strategy documents, and a ‘Consequences of Cancer Toolkit’ exists to help primary care professionals support patients to live well after diagnosis.