‘I kept thinking that I will feel better soon’
It is estimated that 50 per cent of us will develop cancer in our lifetime. More people are living longer following a cancer diagnosis, either with cancer or following successful cancer treatment. Cancer and its treatment can have a wide-ranging impact on all aspects of life. The need to understand what this impact is, and what can be done to support people to live with and manage it, has gained recognition in recent years.
The Macmillan Survivorship Research Group’s programme of research is grounded in what patients have told us is a priority for research to focus on, namely understanding the impact of cancer on people’s daily lives and identifying ways to help them manage this impact.
‘It has contributed to my complete loss of confidence’
We began by conducting a number of qualitative studies and literature reviews to better understand the impact of cancer and its treatment. The qualitative studies highlighted that confidence can be significantly knocked as a consequence of cancer and its treatment, and it can take time and support to rebuild lost confidence. This is not necessarily something that is expected or talked about. In addition, the physical, psychological and social impact can last longer than people expect. They may suffer in silence, unaware that many consequences are common, they are not alone, and support may be of benefit. Our early qualitative research focused on life after cancer treatment, and we heard accounts of not wanting to bother busy health professionals who need to focus on those with cancer, and low confidence which had an impact on all aspects of life:
OK I am 40 now and I’ve come to terms with it all but it is still quite tough to do that knowing it is never going to get any better than that so that was difficult. […] it has contributed to my complete loss of confidence and I lost my job really because I just couldn’t cope.
People may not realise that some long-term effects are quite normal and can take time to improve:
I kept thinking that I will feel better soon but it just kept going on and I think I was actually on the verge of ringing up the Breast Care nurse to say how long do you carry on feeling sort of down and I think I read in the paper that lots of people do feel like it and it’s quite normal.
Informed by the literature reviews and our qualitative research we then developed a conceptual framework of recovery of health and well-being which assumes cancer and its treatment are disruptive to daily life in a range of ways. We hypothesised that confidence to manage this disruption is key to enabling people to manage the consequences with appropriate support. Greater confidence to manage is associated with better health and wellbeing beyond treatment.
‘You feel you are being a nuisance’
Follow-up care for patients after initial cancer treatment is changing and based on individual need and likelihood of cancer recurrence. This means that routine follow-up appointments are no longer the norm for many people. Instead, those eligible engage in self-managed follow-up whereby access to support is on a ‘when needed’ basis. Routine surveillance is still conducted as required but may be done remotely – such as through GP rather than hospital appointments. It is important to note that many people can feel very vulnerable and not in a position to seek or accept support, especially once treatment is over. This has implications for supported self-managed follow-up:
I think you feel a little bit that you are being a nuisance. […] You feel very vulnerable to have to ask for help. I think that’s what it is, it’s being able to ask for their help isn’t it?
To examine the impact of cancer and treatment in more detail and on a larger scale, we have established a number of UK wide cohorts involving people recently diagnosed with cancer (e.g. CREW with 1,000 colorectal cancer patients from before surgery with curative intent up to five years later; and HORIZONS with almost 3,500 participants from across the UK with breast cancer diagnosed under age 50 years; non-Hodgkin’s lymphoma; or gynaecological cancers). Participants are invited to complete detailed questionnaires before treatment with curative intent begins and at regular intervals in the months and years beyond. Detailed clinical information is also collected from hospitals where these patients are being treated including information about cancer type, stage of disease, treatment type and so on.
This forms a very rich and valuable dataset from which we can examine consequences of treatment and what helps or hinders recovery of health and wellbeing following treatment with curative intent in ‘typical’ groups of patients. We are assessing a range of psychosocial variables including a measure of self-efficacy to assess confidence to manage consequences of cancer and its treatment over time. Self-efficacy is the belief in one’s capabilities to achieve particular goals in relation to a task and includes the confidence in having the behavioural, motivational and cognitive resources necessary to achieve desired outcome (see Albert Bandura’s work). There is growing evidence that self-efficacy can be enhanced through appropriate intervention and is associated with better quality of life and reduction in health crises. We aim to use understanding gained from the cohort studies to inform healthcare delivery and supportive resources and information that may be provided by charities and others involved in supporting people affected by cancer.
Trajectories of recovery
Our CREW cohort involving people diagnosed with colorectal cancer and awaiting surgery with curative intent has completed follow-up of participants up to five years post-surgery. CREW has identified four trajectories of recovery where self-efficacy to manage the impact of cancer and its treatment and depression are key predictors of health and wellbeing up to two years after surgery. 30 per cent of the cohort fell into the lower two trajectories associated with poorer quality of life. Around 40 per cent of the CREW cohort report low confidence to self-manage the consequences of cancer and its treatment at some point.
I am surprised that my overall level of confidence has diminished over time – I thought the opposite would happen as I became more knowledgeable about the disease and more “experienced” in knowing what to do. With time my confidence seems to have been progressively eroded.
We initially set out to understand how to support people better once their treatment was over, but our CREW findings have highlighted the importance of assessing needs and confidence to manage cancer and treatment related consequences as soon as possible following cancer diagnosis so that appropriate health care and interventions can be offered which enable people to grow in confidence to self-manage the impact of cancer and treatment whilst they are receiving treatment. People experiencing depression and anxiety also need appropriate support as soon as possible after cancer diagnosis so that their health and wellbeing outcomes are not adversely affected in the longer term if left unsupported. Psychosocial support may come from a range of sources including the health care team, charities, social networks and communities, or specialist professional support where appropriate. Needs and confidence to manage should be assessed at regular intervals and after treatment has finished as many people report feeling abandoned and lost at the end of treatment.
We are continuing to investigate the impact of cancer and its treatment on daily life in our cohorts of patients through the HORIZONS programme. Early indications from HORIZONS suggest that the proportions of people reporting low confidence to manage the consequences of cancer and treatment are higher than in our CREW cohort. Levels of depression and anxiety are also higher in the HORIZONS cohorts. These findings are going to be important for informing the NHS personalised care agenda where care will be tailored according to patient’s needs. It is important to note that these early HORIZONS findings are from data collected before the pandemic.
‘It feels like wasting whatever time I’ve got left’
We have adapted our ongoing research during the pandemic to understand how the pandemic is having an impact on people in our studies. For example, we are assessing the impact of the pandemic on our HORIZONS cohorts and expect that the addition of the pandemic and associated social restrictions is having a significant impact on those who have had cancer and may also be living with other conditions and shielding as a result. We are waiting to complete data collection before reporting findings more widely but in the interim are working closely with Macmillan Cancer Support (funders of this work) and Cancer Alliances to inform their strategic direction to support people living with and beyond cancer.
We have also conducted research with people living with treatable but not curable cancers and the pandemic has had a significant impact due to restricted opportunities to see family, friends and engage in meaningful activities. A report detailing this work can be found here: Calman et al. (2021). ‘It feels like wasting whatever time I’ve got left’: Living with treatable but not curable cancer during the COVID 19 pandemic.
Improving support for those living with and beyond cancer
We are using the understanding from the cohort studies to directly inform changes in health care for people recently diagnosed with cancer. Our close working partnerships with our regional Cancer Alliance supports the rapid translation of research findings into practice change and patient benefit. This includes working with Cancer Alliances to support the introduction of cancer support workers into the care pathway from the point of diagnosis and following treatment so that those more able to self-manage are supported by cancer support workers and those with more complex needs, including low confidence, are supported by clinical nurse specialists and referred to specialist services as necessary. We are working with the Cancer Alliances to support more integrated working between primary and secondary care and communities to better support people living with and beyond cancer. We are also working with Cancer Alliances to identify the best means to assess people as soon as possible after cancer diagnosis so that appropriate care and support can be tailored according to need and confidence to manage with referral to specialist services where required.
We also work closely with third sector organisations, including Macmillan Cancer Support and Bowel Cancer UK, and provide regular updates of our research findings to support their services and related activities. We actively support them to disseminate information regarding the psychosocial impact of cancer and its treatment to health care professionals and people affected by cancer through information materials, podcasts, e-learning and blogs.
We are actively developing decision support tools and self-management support informed by our research. For example, we have co-created RESTORE a web-based resource to support people living with and managing cancer related fatigue after cancer treatment. RESTORE was created involving people affected by cancer related fatigue, clinical and academic experts, digital experts and Macmillan Cancer Support and tested in 12 UK hospitals and led by the Macmillan Survivorship Research Group. Cancer related fatigue is a commonly experienced but often unexpected consequence of cancer treatment. Many people struggle in silence and for long periods. RESTORE was designed to support people to become more confident to manage the impact of cancer related fatigue on everyday life and achieve the things important to them in spite of their fatigue. There is evidence that RESTORE improves confidence to manage fatigue, normalises and acknowledges the existence of fatigue and has most benefit in the first year after primary treatment.
As well as a person’s confidence to manage the impact of cancer and its treatment we want to understand the role of others in supporting people living with and beyond cancer (from the perspective of the person with cancer). In CREW 30 per cent of participants reported that social support declined over time. This is highly likely to have been exacerbated by the pandemic. In HORIZONS we are exploring the role of social networks in supporting self-management as we need to better understand how this relates to confidence to manage the consequences of cancer and treatment.
Meaningful, relevant and persisting
Our research to date has highlighted the importance of psychosocial contributors to health and wellbeing, particularly confidence to manage consequences of cancer and its treatment and mental health, which are as important as disease and clinical contributors. We need to use this information to improve patient care and support from the point of diagnosis, through treatment and into the months and years beyond so that people feel better equipped and supported to manage the consequences that may persist or arise years later. There are examples of excellent care and support as well as evidence-based resources to help people manage. We need to ensure that people living with and beyond cancer, health care professionals, third sector organisations and communities are aware of and signpost people to them. We also need to continue to work closely with people affected by cancer in the design and delivery of services and research to ensure that it is meaningful, relevant and results in better care and experiences for everyone affected by cancer and not just those who have the confidence and knowledge to access what they need when they need it.
- Professor Foster was a panellist on our recent ‘Living with and beyond cancer’ webinar. (If you were a delegate on that, we'll be in touch soon with some follow up from the Q&A etc). Find much more on cancer in our archive, including the collection from our May 2021 issue.
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