Patient advocate Cara Hoofe describes her experiences of being out of active treatment following treatment for colorectal cancer.
More patients are surviving colorectal cancer than ever before, with 58% now surviving 10 years post-diagnosis.
After treatment, patients often struggle with the emotional impact of a cancer diagnosis. Contact with doctors and clinical nurse specialists becomes infrequent post-treatment and patients are often left without any pathway for psychological support.
With more patients living after cancer, is it now time we start enabling them to thrive and not just survive?
The ICR Clinical Trials and Statistics Unit (ICR-CTSU) leads the design, conduct and analysis of phase II and III national and international cancer clinical trials. Our findings directly influence clinical practice within the NHS and worldwide.
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The long-term psychological impact of cancer
Dr Olga Husson, Staff Scientist in the Sarcoma Clinical Trials Unit at The Institute of Cancer Research, London, is working on just that.
Olga’s research, which was carried out in the Netherlands before she moved to the ICR, involved analysing post-treatment patient questionnaires through a patient registry called PROFILES. Patient outcomes were reported for 10 years post-diagnosis to look for depression, anxiety, and quality of life.
Long-term depression was reported in 19% of patients, compared to 13% of the general population. Anxiety was reported in 21% of patients, compared to 12% in the general population of the same age and sex. Both were statistically significant. Olga said:
“It is well accepted that higher distress levels are common after cancer, but most people aren’t aware this effect lasts throughout patients’ lifetimes.
“This study helps raise awareness that even 10 years post-diagnosis, a significant amount of patients struggle with depression and anxiety.”
Why quality of life research matters to patients
Cara Hoofe, who was treated for colorectal cancer at Imperial Hospital in London, and has been out of active treatment for three months, described her experience:
“Before, I didn’t quite realise or process how cancer affects every part of your life, but it is just everything. Only when I wrote down all of the losses I have felt since my diagnosis did it really hit me. It’s a lot to deal with.
“At the time you don’t think about it too much, because it would overwhelm you completely. It is when you finish treatment that you have the time to consider it all.
“When the bouts of depression are there, quality of life goes down so much. You withdraw from your friends and lose all love for life.”
Olga’s research looked at identifying subgroups of high-risk individuals, to allow healthcare professionals to direct psychosocial support at the patients that are most vulnerable.
The research found several risk factors that affect the long-term chance of having high levels of depression and anxiety and reduced quality of life. These included being older, single, having more than one health condition, and a lower education level.
The potential impact for patients like Cara
By patients reporting on their own mental health and this data being available on a registry such as PROFILES, researchers can demonstrate to patients their current and future risk level in an easy to understand traffic light system. Olga explained:
“By giving patients this information, you empower them to go to healthcare professionals with something physical, enabling them to get the support they need.
“In the future, if we could get to a place where, if a patient agrees, healthcare professionals are sent this information directly, we can ensure that the most vulnerable individuals don’t slip through the net.”
And Cara reiterated why this is so important: “The difficult part is identifying when you are suffering and need that extra help. You often need a nudge in making this first step.”
Signposting support for survivors
Olga is working at the ICR to bring the PROFILES registry to the UK and is on track for the registry to be up and running in September with patients treated at our partner hospital, The Royal Marsden NHS Foundation Trust.
Basing this research on patient perspective you can really find out what is important to patients, and in turn ensure they are appropriately supported. Cara said:
“Healthcare teams don’t often advise on any psychological support, it is left to the individual to make that step on their own.
“Research like this is great – we are starting to recognise that people need support after cancer. It shows recognition that more people are surviving bowel cancer, and this issue will become more important as treatments progress and even more people survive.
“There needs to be a system in place for support after treatment. It’s hard to know what you are looking for, where to go, and who to speak to. Ideally there would be signposting as a ‘going away gift’ from the hospital.
“With research like this, that shows how many people struggle with their mental health post-cancer, the pathway will evolve to make sure patients are helped post-treatment. If you know who is more at risk there can be treatment pathways and signposting to make sure that vulnerable people are supported.”
The best chance to live a happy life
It is exciting to see research acknowledging the long-term emotional impact of cancer on patients. It demonstrates just how far we have come in cancer research in recent decades.
With a registry like PROFILES, hopefully we will get to a place where, as more people survive cancer, they also get the best possible opportunity to go on to live happy and fulfilled lives.
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