Publish date: 28 October 2021
Cancer Quality of Life Outcomes – Integrating patient-reported outcomes into the cancer pathway to improve NHS services
By Ellie Gunner-Taylor, Macmillan Quality Improvement Officer (Patient Experience and Health Inequalities)
More people are surviving cancer than ever before, thanks to continuing improvements in early detection and treatment. But, for many, surviving cancer is not the end of the journey. Living with the long-term effects of the disease, and its treatment, can have a similarly negative impact on people’s physical, emotional and social wellbeing.
In addition to the potentially life-changing physical consequences of cancer, and its treatment, many cancer survivors also experience other long-term effects such as cognitive impairment, fatigue, pain and sexual difficulties. In fact, the Macmillan ‘Cured – But at What Cost?’ report (2013) highlights that as many as 25% of people in the UK face poor health or disability after treatment for cancer.
Consequently, many people who are living beyond cancer experience financial, social and practical difficulties, which can all impact their quality of life.
Cancer also has a significant impact on emotional health and wellbeing. Fear, isolation, loss of self-esteem and loss of independence are commonly experienced in the first stages of the cancer pathway. Yet, as this time, many people enter ‘survival mode’ whereby the physical illness, treatment and practical issues consume the person’s time and energy, and the broader psychological impact is compartmentalised.
It is often only once the acute phase of diagnosis and treatment have occurred that the person is able to truly comprehend the impact cancer, and its treatment, has had on their mental health. In fact, the Mental Health Foundation (2018) found that 50% of service users identified the post-treatment stage of the cancer pathway as an emotional ‘false summit’ whereby the psychological distress of having cancer and undergoing treatment surfaces.
The post-treatment phase is also often the point at which the person leaves the clinical environment and support is almost entirely withdrawn; and, the ‘patient’ is expected to return to the ‘person’ they once were.
Research suggests the long-term issues experienced by cancer survivors can also vary due to factors such as sex, age and cancer type. For example, concerns that were relevant for younger survivors related to body image; the ability to have children; being treated differently by people because of having had cancer; difficulties talking about cancer; negative personality change; needing psychological support; loss of future life plans; and, financial problems (van Leeuwen et al., 2018).
Issues that were found to impact older people include neuropathy and the impact on mobility and independence; under-recognition of pain, or the assumption of pain being associated with the person’s age or comorbidities; changes in sexual function and drive (which may be given less attention in older people); and, the social and psychological impact of cancer (Scotté et al., 2018).
People diagnosed with certain cancer types may also experience site-specific survivorship issues. For example, researchers found bladder, breast, colorectal, and head and neck cancer survivors were more likely to report issues with body image, compared to survivors of other types of cancer.
Similarly, survivors of lung cancer and glioma reported having a negative health outlook as highly relevant. Whereas, problems with cognitive functioning were rated as highly relevant by survivors of glioma, lymphoma, lung, bladder, breast, and head and neck cancer; and, people who had had lung, lymphoma, and colorectal cancer more often experienced work-related issues compared to other survivor groups (van Leeuwen et al., 2018).
This suggests the long-term issues faced by people living with and beyond cancer are highly individualised; and, whilst some are well-recognised and typically experienced by many, others are specific to each individual, and services may need to be adapted, or new ones introduced, in order to provide the relevant support.
So, as the number of people living with and beyond cancer in the UK rises, the need for research into the long-term impact of cancer, and its treatment, is crucial to ensuring survivors of cancer do not compromise their quality of life in exchange for length of life.
Measuring quality of life
In order to inform policy-makers and promote systemic change, factors that impact the quality of life of people living beyond cancer (such as physical, emotional and social wellbeing) need to be measured on a large scale. One way to do this is through the use of patient-reported outcomes (PROs).
PROs are health outcomes reported directly by the person, without any input or interpretation from their healthcare professional or other individuals. They encompass quality of life measures, such as symptom or pain and fatigue levels, and offer insight into the person’s experience. PROs can, therefore, be used to create a holistic approach to decision-making.
Whilst PROs are regularly used in clinical trials and in some areas of the NHS, such as in patients undergoing hip/knee replacements, the feasibility of measuring PROs in people living with and beyond cancer has not been recognised until recently.
The introduction of a quality of life metric to track, and respond to, the long-term impact of cancer was, consequently, identified as a priority in the NHS Long Term Plan (2019); and, this has led to the development of a national survey which measures quality of life at scale, through consistent assessment of PROs.
Cancer Quality of Life Survey
The Cancer Quality of Life Survey, which is run by Public Health England, NHS England and NHS Improvement, incorporates questions from two standardised measures of health-related quality of life (‘EQ-5D’ and ‘EORTC QLQ-C30’). It assesses areas such as mobility, self-care, usual activities, pain and mental health; and allows comparisons to be made both across different cancer types, and with people treated for other health conditions/the general population. This will help to build a picture of the different ways people experience life after a cancer diagnosis.
The survey is sent to patients 18 months post-diagnosis to ensure the reported outcomes are based upon the long-term effects of cancer, rather than the shorter-term impact of treatment.
It was first piloted in September 2020 within a random 10% sample of patients diagnosed with breast, prostate or colorectal cancer. Following a three-month test period, the sample was widened to all breast, cancer and colorectal cancer patients 18 months post-diagnosis; and again, in July 2021, to a random 10% sample of patients diagnosed with all types of cancer (excluding appendix cancer, microinvasive breast cancer, and those with cancers arising in polyps).
From October 2021, all patients diagnosed with cancer (excluding appendix cancer, microinvasive breast cancer, and those with cancers arising in polyps) in England will now be invited to complete the survey around 18 months after their diagnosis. The dashboard, where national and regional/Alliance-level reports will be made available, was also introduced in October 2021.
There are also plans to provide individual patient summaries whereby respondents will receive a visual representation of how they scored in comparison to the general population. This may be used as a prompt to inform personalised care planning and conversations.
The integration of PROs into the cancer pathway, via the Cancer Quality of Life Survey, is an ambitious programme with a scale and depth that isn’t being matched anywhere else in the world. It will provide an insight into quality of life outcomes following a diagnosis of cancer, and will guide the National Cancer Programme as to how the impact of cancer is managed. It will also empower people living with and beyond cancer to have meaningful discussions about their cancer, and to help shape future services.
It is hoped that the Cancer Quality of Life Survey will improve quality of life outcomes for people living with and beyond cancer by empowering patients, influencing health policy and driving service improvement.
Professionals in Cheshire and Merseyside can promote the survey with materials created by Cheshire & Merseyside Cancer Alliance. You can find them here: https://cmcanceralliance.nhs.uk/work/patient-experience-and-health-inequalities/cancer-quality-life-survey
Further information for the public can be found here: https://cmcanceralliance.nhs.uk/work/information-public
- Cured – But At What Cost? (Macmillan, 2013)
- Supporting the emotional and mental health needs of people with cancer (Mental Health Foundation, 2018)
- Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire (van Leeuwen et al., 2018)
- Addressing the quality of life needs of older patients with cancer: a SIOG consensus paper and practical guide (Scotté et al., 2018)
- Patient-reported outcomes of cancer survivors in England 1–5 years after diagnosis: a cross-sectional survey (Glaser et al., 2013)