Care pathway empowers men with prostate cancer to take control of their health
An project run by the University of Southampton that focuses on helping men with prostate cancer to self manage their disease is helping to improve care.
In January 2014, the University of Southampton launched a ground-breaking initiative to develop a new care pathway to improve prostate cancer care.
The TrueNTH supported self-management and follow-up pathway supports men with the disease to self manage certain aspects of their care, including accessing their prostate-specific antigen (PSA) test results online.
The three-year initiative was one of eight projects in the UK chosen to be part of the TrueNTH programme, a global partnership of healthcare professionals, academics and volunteers aiming to improve the lives of men with prostate cancer.
Global men’s health charity the Movember Foundation has invested more than $41.5 million in the TrueNTH programme, which has been delivered in the UK in partnership with Prostate Cancer UK (PCUK).
Prostate Cancer UK programme director for TrueNTH Sarah Cant says the pathway empowers men to take control of their health and hopes clinicians will have more time to give support to those who need it most.
‘If successful we will be working closely with the university to ensure this new way of following up men can be adopted by hospitals throughout the UK.’
More than 47,000 men in the UK are diagnosed with prostate cancer every year, statistics from PCUK show, and the year-on-year increase in prevalence of the disease is increasing the demands on the healthcare system and resulting in high levels of unmet needs reported by men.
Aims and intended outcomes
The aim of the initiative was to implement a sustainable model of follow-up care in secondary care for men who have prostate cancer based on a number of principles, including supported self-management and remote surveillance.
Five NHS trusts across England served as pathway implementation sites, and these were: Dartford and Gravesham NHS Trust, Royal Cornwall Hospitals NHS Trust, Royal United Hospitals Bath NHS Foundation Trust, St Helens and Knowsley Teaching Hospitals NHS Trust and University Hospital Southampton NHS Foundation Trust.
TrueNTH Pathway implementation
The University of Southampton has developed a toolkit for implementing the pathway. Written in collaboration with the clinical teams and healthcare providers involved in the initiative, it sets out examples of protocol on how to assess men’s eligibility for the pathway.
It also states that men who are enrolled on the pathway no longer need to attend face-to-face clinic appointments to discuss PSA levels that fall within normal limits, and they are introduced to a support worker who is their key worker for the duration of their follow-up.
- The men are given the opportunity to sign up to a patient online service where they can access their PSA results, health information such as treatment summaries and care plans and they can complete a holistic needs assessment. They can also use an electronic messaging function to contact their support worker. The system prompts men when blood tests are due and the healthcare team can also track and review PSA results and holistic needs assessments.
- A healthcare support worker acts as coordinator for the men’s post treatment care and is a point of contact for men who have queries or concerns.
- After men have entered the pathway, they attend a four-hour supported self-management workshop to prepare them for remote monitoring and they also have the opportunity to meet other men in a similar position and discuss promoting healthy lifestyles and setting personal health and well-being goals.
Each workshop is usually made up of between eight and ten men and is facilitated by a clinical nurse specialist (CNS) and support worker who have been trained in workshop delivery skills.
University of Southampton clinical professor of cancer nursing and end of life care Alison Richardson led the project and says that although an evaluation of the pathway is yet to be published, so far the results look ‘promising’.
‘With the qualitative data we are getting a clear picture about the factors which have made a difference,’ she explains.
‘There is a strong indication that the urology teams have really taken on board the philosophy of supported self-management.
‘The teams have been supported to introduce change in a controlled way and have begun to see its impact for themselves. They haven’t even seen all the results of the study and they haven’t waited for us to tell them it is working as they have evidence in their own localities.
‘Urologists and oncologists are starting to see the programme is helping release clinic capacity as men with relatively low levels of need don’t come to the clinic in the same way as before.’
Professor Richardson says there was some initial scepticism from health professionals about how a group of generally older men would take on board a digital means of follow up and if they would take part in workshops with other men.
She adds: ‘But it soon became clear that they were up for it. The comments from some of the men have been amazing; they have learned more about their disease through the workshops. Healthcare staff have said there has now been a shift in the relationship with their patients and instead of them telling the patients they are okay, it is the other way around.’
'The programme is proving to be truly transformational’
Professor Richardson admits that the pathway may have initially seemed challenging for clinical nurse specialists (CNSs) who are used to giving information to patients in a different way, but with support and training they ‘took the leap’ and embraced the project.
‘During the evaluation the men themselves rarely mentioned that they saw it as a cost saving exercise, they simply viewed it as logical and questioned why they were previously waiting hours in clinic to spend a couple of minutes with a urologist who would tell them to come back in six months.
‘The urology teams were at first concerned about whether this project was safe and felt they needed to see the men in clinic. But they can now see the benefits and that they have more time to spend with men at the start of their treatment and with those who have complex needs.’
Gill Kitto is employed as a support worker in the urology team at St Helens and Knowsley Teaching Hospitals.
‘I have a lot of support from the cancer nurse specialist team and consultants so I am able to give men information once the CNS or consultant says it’s appropriate to tell them about the follow-up and IT system. I can take clinical questions and pass them on, but is not my responsibility to answer them.
‘When I access the system, I can see the men who haven’t been checking their PSA results remotely and I check for those results daily. Even if the PSA level has gone up once, I check with the CNS.
‘I have my own spreadsheets and keep a separate log, if a patient misses a blood test or is late I will send out a reminder. No patient gets lost, even if they don’t fill in a health MOT I will get in touch.’
Public health specialist Hazel Brodie, who helped project manage the programme, says the pathway has proved cost effective and the implementation trusts have committed ongoing funding.
It is hoped that cancer alliances who have accessed transformation funding from NHS England might back similar schemes in their areas, she adds. The project has shared its learning with more than 100 organisations and more than 35 of them are now implementing it.
The university may look next at collaborating with TrueNTH global teams to tailor the pathway even more.
Professor Richardson says: ‘The pathway is now being applied to different groups of patients on follow up, such as colorectal and breast cancer. It is proving to be truly transformational.’
Uro-oncology clinical nurse specialist Miranda Benney worked as an adviser to the TrueNTH self-management and follow-up pathway and helped deliver it at Royal United Hospitals Bath NHS Foundation Trust.
‘Having extensive knowledge of managing men with stable prostate cancer, I already knew remote monitoring would work and the pathway was a much more patient focused and relaxed way of delivering healthcare to a large cohort of patients,’ she says.
‘The men said the workshops had exceeded their expectations. For instance, we could let them know that when they come off hormones their PSA levels would rise and this wasn’t anything to worry about. We also brought up points such as not looking at their blood results at 11pm on a Saturday night.
‘It put the men in touch with others who had similar treatments and widened their social networks and we could discuss topics like loss of sexual function, libido and mood changes. One man said his wife hung his coat on the bannister so she could warn him if he was getting tetchy and he would go out for a walk. The men really weren’t afraid to talk and share.
‘From a CNS point of view, I was able to line manage the support worker and helped to facilitate the workshops. Normally as nurses you aren’t taught facilitation skills, so it was something new to learn. This pathway is a different way of delivering care and helps normalise the effects of cancer for patients.’
Petra Kendall-Raynor is a freelance health journalist