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11 Nov 2019
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How and why do patients contribute to research?

  • Victorian Comprehensive Cancer Centre

Claire Foster is Professor of Psychosocial Oncology and Director of the Macmillan Survivorship Research Group in the School of Health Sciences, Faculty of Environmental and Life Sciences, University of Southampton, UK. Her research focuses on advancing an understanding of health outcomes and experience of people diagnosed with cancer, treated with curative intent and self-management support.

At the recent VCCC 5th Psycho-oncology Conference, Professor Foster spoke on advancing comprehensive cancer care and what we have learnt from patients so far. Here she provides her thoughts and ideas of improving practices to better involve patients in research.

How do patients contribute to advancing comprehensive cancer care?

It is important that patients are involved in research in a range of ways to ensure that it is meaningful and relevant. There are frequent and important advances in diagnostic techniques and treatments and alongside this it is important to hear directly from patients on what the impact of these are on their daily lives. Patient priorities, experiences and outcomes should be at the heart of how we shape and deliver comprehensive cancer care. Asking patients what their priorities for research are is an important step, involving patients as research partners in how research is developed and conducted is also important, and involving patients as participants in a range of studies is needed to better understand what impact cancer and its treatment has on people with a diagnosis and those who care for them.

What are ‘patient reported outcomes’? How are they collected and measured?

Patient reported outcome measures are ways that information is collected from patients about how they think and feel at a given point in time. Information is generally collected systematically through validated questionnaires. For example, questions may be asked about severity of physical and psychological symptoms or problems, and how much these are bothersome. Others, may ask patients to rate their quality of life on a number of domains such as physical, psychological, social and spiritual aspects to gauge whether and how much cancer and its treatment is having an impact on these aspects of life. Data may be collected online, via phone or as part of a clinical conversation. 

Why are patients involved in reporting outcomes? Shouldn’t this be done by a researcher or clinician?

Subjective assessments of what people think and feel have been shown to be important in how people manage their cancer and treatment and how well they recover following treatment. Understanding this can help think about how to tailor care to support individuals who have been identified as needing more support. For example, to help them become more confident to live with and manage consequences of cancer and its treatment such as fatigue. More ‘objective’ measures of health status conducted by clinicians do not always correlate with patients’ subjective assessments.

Your research team develops and tests web-based resources, isn’t it risky for patients to find support information themselves? Shouldn’t they be getting information from their doctor or clinician?

Our web-based RESTORE resource is designed to support people living with cancer related fatigue to become more confident to manage the impact of fatigue on daily life. RESTORE was informed by theory and evidence and was co-created with patients, clinicians, academic experts and Macmillan Cancer Support to ensure that the information provided is accurate and up-to-date and that the strategies included in RESTORE such as goal setting were informed by evidence and theory. RESTORE was introduced to people after their curative intent treatment had ended by their clinical teams and underwent rigorous testing before it was made public.

People affected by cancer are likely to seek guidance and support from a range of people and places to help them manage consequences of treatment. This will often not be health care professionals. Many people access the internet for such information. We have found that it is important that web-based resources are endorsed by credible sources, including health care professionals and well-regarded charities.

Why is research done on patients who have been successfully treated for cancer?

Research has demonstrated that the end of treatment can be a challenging time for many people. Although cancer treatment can be very tough, there is often a routine and contact with health professionals and other patients is generally high. At the end of treatment when contact with hospitals is largely gone, people have described feeling isolated, abandoned and lost. We have also found that confidence is often knocked which can make it difficult for people to re-engage with the things they did before their diagnosis or obtain support and they may experience persistent fatigue and low mood. Recognising this, providing information and offering appropriate support can help people to take their time and learn new strategies to support them to self-manage some of the consequences of treatment, make lifestyle changes and know how and when to seek advice if they experience signs of possible recurrence. For some people, side effects and late effects of treatment can persist or emerge months or years later and research suggests regular assessment of people’s needs and appropriate intervention are important.

Why is mental health important in the treatment of patients with cancer?

Cancer and its treatment can cause physical and psychological consequences which can have an impact on all aspects of life. Our research has shown that depression and a lack of confidence to manage health related problems at diagnosis is an indicator to who is less likely to experience good health related quality of life in the future. Mental health is less likely to be discussed or addressed with the focus more often on physical symptoms and scan results. Cancer and its treatment can have a significant psychological impact on people diagnosed with cancer and those who care for them. Mental health needs to be acknowledged and help provided to patients to recognise when specialist intervention is required and how they can access this.