Prostate cancer: supported self-management programme gives patients more control

New care pathways and ways of supporting patients are easing the strain on prostate cancer services, where many clinical nurse specialists are working with more than 600 men

New care pathways and ways of supporting patients are easing the strain on prostate cancer services, where many clinical nurse specialists are working with more than 600 men

  • Research shows a remote, digital, self-managed approach can deliver high-quality care
  • Online services and patient workshops give men skills and confidence to manage their condition
  • These care pathways could be applicable to other types of cancer
Picture shows a group of older men sitting round a table holding a discussion. This is a workshop for prostate cancer patients run as part of the supported self-management programme. New care pathways are easing the strain on prostate cancer services.
A prostate cancer workshop in the supported self-management programme

Every 45 minutes in the UK, a man dies from prostate cancer.

One in eight men will receive a prostate cancer diagnosis during their lifetime and there are now about 400,000 UK men living with or beyond prostate cancer.

By 2030 the disease is likely to become the UK’s most commonly diagnosed cancer.

11,500 men

in the UK die each year from prostate cancer

Source: Prostate Cancer UK

The strain on services is immense. Prostate Cancer UK says clinics are already struggling to cope with the growing number of diagnosed men.

The charity says almost one third of clinical nurse specialists in prostate cancer care are working with more than 600 men at once.

Patient support and new care pathways

But new ways of supporting patients and new care pathways are beginning to emerge, some of which may be applicable to other forms of cancer.

An example is the TrueNTH Supported Self-Management (SSM) programme.

Funded by the Movember Foundation, the programme has been trialled successfully in five NHS trusts and with more than 2,600 men.

TrueNTH is an international collaboration of clinicians, academics, patients and organisations that seeks to identify the best and most cost-effective models of improving prostate cancer survivorship. It is managed here by Prostate Cancer UK.

The TrueNTH SSM combines workshops, dedicated support staff and access to online services to give men whose condition is stable after treatment control over their own care.

How TrueNTH Supported Self-Management programme works

  • Men have access to a support worker who acts as their key worker for the duration of their follow-up care
  • An online patient service allows them to check test results, complete assessments, view patient information and message their clinical team
  • They can attend a four-hour supported self-management workshop with a group of eight to ten other men to develop knowledge, skills and confidence to self-manage their condition
  • Men continue to have their disease closely monitored by their clinical team
  • They do not need to attend routine appointments unless an issue arises

Adapted from Prostate Cancer UK

Miranda Benney is cancer clinical programme manager at University Hospitals Plymouth NHS Trust, but in a previous role was part of the SSM trial at Royal United Hospitals Bath NHS Foundation Trust. She served as clinical adviser to the TrueNTH programme.

Ms Benney says men were selected for the SSM following radical prostatectomy, radiotherapy or hormone therapy, providing their bladder and bowel symptoms had settled and their prostate-specific antigen (PSA) was at an appropriate level.

The programme begins with a four-hour workshop, often run at a venue away from the hospital, where a clinical nurse specialist and a support worker facilitate a structured but flexible agenda. The approach is non-didactic and based on principles of adult learning.

‘We were surprised initially by how much the men talked’

Miranda Benney, former clinical adviser to the TrueNTH programme

‘We covered things like the importance of PSA testing and why we continue to monitor PSA once a person’s had treatment, what to do when you come off hormonal therapy and PSA starts to rise, and what’s normal and what’s not so normal.

‘In Bath we also did work on managing fears and anxieties, and a healthy living section.’

But just as important as this sharing of information was the way men who took part in the workshops talked to and supported each other.

‘We were surprised initially by how much the men talked,’ Ms Benney says.

A good way of talking about what is normal erectile dysfunction after surgery

‘They shared their experiences and that was pretty fantastic – how they learned from each other.’

Men talked about erections and sexual dysfunction, for example.

Picture shows an older man checking the results of his prostate-specific antigen test online as part of the supported self-management programme. New care pathways are easing the strain on prostate cancer services and could be applicable to other types of cancer.
A man checking the results of his prostate-specific antigen test online

‘The workshop was a good way of discussing what is normal erectile function after surgery, radiotherapy or hormonal therapy.’

Ms Benney compares the free-flowing, sociable format of the workshops with traditional follow-up clinic appointments where there may be pressure to quickly impart – and understand – important facts.

129 men

in the UK are diagnosed with prostate cancer every day

Source: Prostate Cancer UK

‘In the workshops you’re getting across those important education points as well as addressing things like fear of recurrence,’ she says. ‘Seeing the men benefit from each other’s experience is quality, it really is. It’s capturing things you would never capture in a clinic setting.’

Workshops offered advantages from a nursing perspective

Ms Benney concedes that some of the men invited to the workshops were initially apprehensive, fearing it would be like going back to school. ‘But once they’d attended the group they absolutely loved it and bonded well.’

The workshops also offered advantages from a nursing perspective. They freed up time for staff to spend with newly diagnosed patients and offered an opportunity to work in different ways.

‘This is a new way of working for nurses,’ says Ms Benney. ‘Historically, we’ve been very didactic in our teaching. This is a much more enabling and holistic approach to delivering care.

‘Plus, you learn new skills such as facilitation. Your listening skills are enhanced. But you also incorporate those core elements of care and compassion that brought you into nursing in the first place.’

Support workers involved in the programme may also acquire skills. Although across the five SSM trial sites the support worker role varied, key tasks included co-facilitating the workshops and being responsible for planning them – everything from screening clinic lists to see which patients might be appropriate, to arranging the venue and catering.

Picture shows a woman who is acting as a facilitator at a supported self-management workshop for prostate cancer patients. New care pathways are easing the strain on prostate cancer services and could be applicable to other types of cancer.
A facilitator at a supported self-management workshop for prostate cancer patients

The other critical element in the SSM model is giving patients online access to their PSA test results as soon as they are uploaded by the laboratory. Via the same digital portal, men can also complete assessments, access clinical information and message their clinical team, thus removing the need for routine appointments.

As well as freeing up clinicians to spend more time with men who have a new diagnosis, the SSM approach can cut costs, because patients involved in the programme are less likely to use other health services.

Unlikely to be any big shocks after test results

But is a digital model of follow-up care not risky if, for example, PSA test results generate concern?

‘We have to remember that the men who come onto this pathway have got stable disease so there are not likely to be any big shocks,’ says Ms Benney. The workshops provide an opportunity to explain that PSA can be affected by, for example, a urine infection. Men are also advised to access their results during office hours, when telephone support is available should they require it.

‘We reassure them that if there is a problem it’s unlikely to be anything significant to the prostate cancer. But if it is, and it needs further investigation, we can call them back to the clinic really quickly.

‘Although they’re being monitored in a virtual clinic, we’re still there for them when they need us.’

Any early concerns that older men might be reluctant to engage with a system requiring some computer literacy were soon allayed. In fact, says Ms Benney, men aged 70-plus were perfectly happy to use the IT portal. It was those who had recently retired and who had hoped they were ‘finished’ with computers and emails who needed a little more encouragement.

Steps to make the programme more widely available

Evaluation of the SSM by researchers from the University of Southampton showed outcomes were the same or even slightly better for men participating in the programme than those in a control group given traditional follow-up care.

The research also found that although introducing and running the SSM required behavioural and cultural change in the clinical team, including developing trust in self-management, staff at all the pilot sites felt the programme improved the quality of care provision.

Picture shows a man’s hand touching an electronic pad with the screen showing ‘message to my physician’. New care pathways such as supported self-management are easing the strain on prostate cancer services.
Supported self-management is easing the strain on prostate cancer services

The study highlighted several factors that would help in implementing the SSM model more widely, including:

  • Flexibility in meeting the needs and preferences of patients, such as alternatives for those who opt not to engage with the workshops or online portal
  • The need for ‘robust communication’ between staff delivering the SSM
  • Need for facilitator training for nurses and support workers running the workshops

Alison Richardson, chief investigator on the study and professor of cancer nursing and end of life care at the University of Southampton, says the management of prostate cancer follow-up varies widely, with many patients worrying while they wait for their PSA results and unsure how to access support if they have problems.

1 in 4

Proportion of black men who will get prostate cancer

Source: Prostate Cancer UK

‘If implemented properly, this model gives them back control over their own follow-up, while ensuring they can still access the care and support they need,’ Professor Richardson says.

High-quality care and more time to focus on patients

Prostate Cancer UK’s director of support and influencing Heather Blake says the research proves that a remote, digital and self-managed approach can deliver a high quality of care while also giving clinical nurse specialists more time to focus on new patients.

‘Even better, this model actually lowers patient costs, making it a win-win for cash-strapped NHS trusts. That’s why we want to see supported self-management schemes like this rolled out across the country.’

Could this SSM be adapted for patients whose condition is stable following treatment for other forms of cancer?

‘Absolutely,’ says Ms Benney. ‘Here in Plymouth we’ve done some pilot workshops for people with breast cancer and colorectal cancer.’

Empowering people with cancer to manage their own care

The NHS Long Term Plan, published in January, was clear about the importance of empowering people with cancer to manage their own care, and about maximising the potential of digital and community-based support. Existing models of care will look ‘markedly different’ in ten years, the plan says.

For Ms Benney, an unexpected personal benefit of the SSM was the satisfaction she gained from delivering care in an innovative way, and seeing participants as people first and foremost, and not simply patients.

‘It’s the best thing I’ve done in my career,’ she says. ‘I’ve helped run some very good clinics but this was something else.’

There are a host of benefits to TrueNTH Supported Self-Management

Picture of Eric Hounslow, a cancer patient who recommends  the supported self-management programme. New care pathways are easing the strain on prostate cancer services.Eric Hounslow was diagnosed with prostate cancer four years ago at the age of 68, and, after treatment, took part in the TrueNTH Supported Self-Management (SSM) programme at University Hospital Southampton.

Before prostate cancer he also had unrelated kidney cancer and was given traditional follow-up care.

‘It’s an extremely tense time because so much rests on what they’re going to tell you,’ Mr Hounslow says.

‘You’re praying for good news but you’re waiting a week or more to find out.’

The SSM programme is different, he says. ‘I can give my blood at 9am and access the results myself later that day, saving me from all that stress.’

He adds: ‘As well as the fast turnaround, there are a host of other benefits. I can access my appointments, medical details, personal information and surgery reports from anywhere in the world.

‘I can also communicate with my surgical team quickly and easily. As someone who has experienced both systems, I’d recommend this scheme to anyone.’

Daniel Allen is a freelance writer

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