TrueNTH is a global initiative, led by the Movember Foundation, tackling critical areas of prostate cancer care. The international network of representatives includes clinicians, academics, patients and organisations from across the UK, Canada, Australia and other countries. Through this initiative we’re working together to identify and demonstrate the best and most cost-effective models for improving prostate cancer survivorship care and support.

The aim

TrueNTH seeks to significantly improve the lives and experiences of men with prostate cancer, as well as the experience of their partners, carers and family members.

Fundamentally, the programme is about making a step change in survivorship outcomes for men with prostate cancer. The partnership will improve the way in which we all work together to address the needs of men along all points of their cancer journey, helping them achieve a good quality of life and to feel knowledgeable and confident about managing their condition.

Success will be seen as widespread adoption of new models of care that show marked improvements in outcomes for men.

We believe this will be achieved by:

  • demonstration – what we’ve done and how
  • evidence – proof of impact
  • dissemination and engagement – sharing and supporting learning

TrueNTH in the UK

In the UK, the TrueNTH partnership of healthcare professionals, academics and volunteers is being managed by Prostate Cancer UK. 

It’s a three year programme, with eight ground-breaking survivorship projects, selected because of the need for significant improvement in each area and their potential to make the biggest impact on the lives of men living with prostate cancer.

The eight projects are listed below. There may be opportunities to get involved in and support these projects. If you have a specific enquiry about TrueNTH or one of the above projects, please email professionals@prostatecanceruk.org

TrueNTH Understanding Consequences

Project Lead: Lucy Brindle, Associate Professor in Early Diagnosis Research, University of Southampton
End date: December 2017

The problem

Since treatment options for prostate cancer can be varied and complex, making a 'no-regrets' decision about treatment can be very difficult. This is even more difficult if the treatment options and associated side effects are not set out clearly and not tailored for the individual patient.

The project

The TrueNTH UK Decision Support: Understanding Consequences Study has developed and is now evaluating a three part complex intervention to improve decision support, and reduce treatment decision regret, for men with low and intermediate risk prostate cancer. The intervention involves an on-line training module for clinicians, the implementation of signposting to Patient Decision Aids and offering audio-recordings of consultations to patients. Results of the evaluation will be available in 2019.

How TrueNTH is confronting it

This is part of a global TrueNTH Decision Support Programme which is developing a treatment 'decision aid' for men with localised, low-to-intermediate risk prostate cancer. The ultimate aim is to develop tools for men with high risk cancer too. The project will also develop training for health professionals so they are able to provide the best support for men making a treatment decision.

TrueNTH Exercise and diet

Project Lead: Sara Faithfull, Professor of Cancer Nursing Practice, University of Surrey
End date: March 2017

The problem

We know that exercise and diet can have a huge impact on health and wellbeing. However, sometimes men lack the tools, knowledge and structures to put this into practice. Obesity and lack of exercise can be common issues after prostate cancer treatment. In addition, men on hormone therapy are at increased risk of cardiovascular problems because of how hormone changes affect the metabolisation and storage of fats.

How TrueNTH is confronting it

This project will support men through their recovery by:

  • helping them and their families understand the risks associated with their lifestyle and encouraging them to make changes where needed.
  • providing men with resources to inspire healthy living such as a pedometer, exercise DVDs, recipes and information on local activities.
  • new online technology, such as online trackers which can help structure and monitor activity.
  • testing if the provision of personal lifestyle prescription and advice to men by community pharmacists will improve outcomes

TrueNTH Supported self management

Project Lead: Alison Richardson, Clinical Professor of Cancer Nursing and End of Life Care, University of Southampton
End date: March 2019

The problem

Men with a diagnosis of prostate cancer report high levels of unmet needs in the months and years that follow treatment, despite regular follow up clinic attendance. Commonly reported issues include urinary and bowel dysfunction, hormone therapy side effects such as fatigue, hot flushes and weight gain; loss of self confidence, fear of recurrence, anxiety or depression; and sexuality-related unmet needs.

Some men with prostate cancer report feeling “abandoned” by the healthcare system once their treatment is complete, and The National Cancer Patient Experience Survey (England) reported that one in four men are dissatisfied with how long they have to wait for an outpatient appointment.

Cancer services must improve the quality of follow up care against a backdrop of increasing numbers of men diagnosed and significant workforce challenges.

How TrueNTH is confronting it

The TrueNTH Supported Self-Management and Follow Up Care project, lead by University of Southampton, has worked in partnership with University of Surrey and five NHS Trusts in England to transform the follow up care pathway.

Men, whose follow up care is managed through this new programme::

  • Have access to to a Support Worker who acts as their key worker for the duration of their follow up care.
  • Have access to an online patient service that allows them to check test results, complete assessments, view patient information and message their clinical team.
  • Attend a 4 hour supported self-management workshop with a group of 8 to 10 men to develop knowledge, skills and confidence to self-manage their condition.
  • Continue to have their disease closely monitored by their clinical team.
  • Do not need to attend routine appointments unless an issue arises.

Our new resources

Resource 1: FILM: TrueNTH Supported Self-Management and Follow Up Care project 

A short film to raise awareness about the project amongst healthcare staff, men affected by prostate cancer and the wider public: 

Resource 2: The Toolkit. A guide to Implementing the TrueNTH Supported Self-Management and Follow Up Care Programme

A toolkit has been developed to support health services intending to implement this follow up care for prostate cancer. This resource includes example clinical protocols, pathway diagrams and many other documents that services can tailor for their own use. The Toolkit can be accessed by visiting the University of Southampton website: www.southampton.ac.uk/truenth-ssm

TrueNTH Post surgery follow up

Project Lead: Caroline Moore, Senior Clinical Researcher and Honorary Consultant, University College London (Division of Surgery)
End date: February 2018

The problem

Men can experience a range of side effects after surgery to remove the prostate, some of which will be short term and others which may have a longer impact. However, we don’t know whether different groups of men will have better or worse outcomes after surgery. If this was known, it could be useful to help inform men who are choosing between different treatments,

How TrueNTH is confronting it

The aim of the study is to develop and evaluate a survey that could be routinely used to monitor the patient reported outcomes of surgery i.e. the impact of surgery on men’s lives. This will involve:

  • Comparing existing surveys to see which can best rate side effects, before surgery, and at 3, 6 and 12 months after surgery
  • Developing and testing a new survey
  • Using the results of the surveys to determine whether certain groups of men have better or worse outcomes after prostate removal surgery
  • Helping men track their recovery progress over time

TrueNTH Needs assessment

Project Lead: Veronica Nanton, Senior Research Fellow, Warwick Medical School, University of Warwick
Duration: 1 year
End date: October 2016

The project is complete and the team are working to integrate the assessment with the Supported self management project.

The problem

There is not currently a Holistic Needs Assessment that is sufficient and aimed at men with prostate cancer. Existing assessment tools either don’t ask the correct questions for prostate cancer or are paper based and difficult to complete in a clinical setting. This HNA tool will look at offering an intuitive route to aid the delivery of TrueNTH Supported self management project

How TrueNTH is confronting it

The aim of this study is to develop and then test the feasibility and acceptability of an electronic prostate cancer-specific Holistic Needs Assessment instrument. Men living with prostate cancer will be able to use the tool to identify any unmet needs which they can then flag to their healthcare professional. We will assess the tool by collecting qualitative data using semi-structured interviews.

 

TrueNTH Continence management

Project Lead: Mandy Fader, Head of School: Health Sciences, University of Southampton
End date: July 2019

The problem

  • Incontinence is a very common problem for men after prostate cancer treatment, with some men enduring lifelong urinary incontinence
  • In extensive interviews in this project, men with incontinence after surgery for prostate cancer have reported feeling very unsupported and without essential information about how to select and use appropriate products.
  • User testing would indicate that some potentially useful products could be redesigned to make them more effective and acceptable.

How TrueNTH is confronting it

In close collaboration with men who have experienced incontinence, this programme has already delivered key new resources that are benefiting men. These include:

  • A new Prostate Continence website providing comprehensive help for men preparing to have a urinary catheter and managing incontinence after prostate surgery (guidance, tips, interviews, downloadable info sheets).
  • An improved Continence Product Advisor website including evidence-based information about men’s products and where to get them, and videos showing how to use them.
  • A new product decision aid guiding individuals and caregivers in selection of products based on physical need, lifestyle and personal preferences.

Planned new resources:

A new product provision system - NHS product provision is constrained by cost and product type and individuals are self-purchasing to supplement their NHS supply or access their preferred products. Using the product decision aid, we are testing a new system which meets the cost needs of the NHS while maximising product choice for individuals.

Penile compression device (clamp) – we have evaluated currently available clamps and found none to be effective, acceptable and safe. Working with experienced clamp users, we have designed and are currently testing a new prototype clamp. Based on our research, we have also provided evidence-based, generic guidance on use of penile clamps.

Washable, absorbent boxer shorts – we have evaluated currently available washable products for heavy night-time incontinence and found none to be effective, practical and acceptable to look at. We have worked with men experienced at managing heavy night-time incontinence to design a new absorbent product, in a boxer-style, and are currently testing a prototype.

 

We are planning to make successful prototypes available for purchase.

 

TrueNTH Post-radiation follow up

Project Lead: John Staffurth, Clinical Senior Lecturer, Cardiff University
End date: June 2017

The problem

40% of men treated with radical radiotherapy for prostate cancer have a change in bowel function that affects their quality of life, with 20% reporting a severe impact on quality of life.

How TrueNTH is confronting it

To tackle this, this initiative looks to:

  • improve the whole patient journey, from identifying patients at risk of bowel side effects at an early stage, to better follow-up and monitoring after treatment
  • provide training and support to health organisations to make these improvements in care a reality
  • assist those centres which have developed their expertise in sharing best practice with others, and improving care across their region as a result.

TrueNTH Sexual wellbeing

Project Lead: Eilís McCaughan, Professor in Cancer Care, Ulster University
End date: Dec 19

The problem

Men experience significant and long-term side effects related to prostate cancer and its different treatment approaches. Sexual wellbeing challenges are the single most common issue reported. These challenges often have a major impact on the body, the mind and on relationships. As such, they can reduce overall quality of life for men and their partners.

Currently, services provided to address sexual concerns are variable and fragmented. Many men report not receiving adequate care and support. Although having meaningful conversations and providing support around sexual wellbeing is an important component of care, healthcare professionals report often feeling ill-equipped to deal with these issues and say they lack appropriate resources to offer men and partners.

How TrueNTH is confronting it

Through a programme of work entitled 'Maximising Sexual Wellbeing | Prostate Cancer', three resources have been developed to improve the sexual wellbeing of men living with prostate cancer and their partners:

  • an e-learning resource called 'Talking about sex after prostate cancer' for healthcare professionals to provide them with the awareness and skills to deliver routine sexual care to men and their partners
  • a tablet-based Engagement, Assessment, Support and Sign-posting resource (EASSi), to facilitate routine, face to face, sexual care discussions with all men, providing brief, personalised support and signposting them onto appropriate resources
  • an online self-management resource for people living with prostate cancer, providing personalised self-management strategies and information based on treatment, relationship status and sexual orientation to help maximise sexual wellbeing after prostate cancer. The resource can be accessed at any time during the cancer journey

References

  • List of references  

    • Sinfield P, et al (2009) Men’s and carers’ experiences of care for prostate cancer: a narrative literature review. Health expectations 12: 301-312
    • Quality Health (2017) The National Cancer Patient Experience Survey [online] available at: http://www.ncpes.co.uk/reports/2017-reports/national-reports-2 accessed on 04/02/2016
    • Maddams, J. et al. (2014). Projections of cancer prevalence in the United Kingdom 2010-2040 Br J Cancer 107(7), pp.1195-202
    • Prostate Cancer UK. (2014). Nursing Workforce Survey [online] available at: http://prostatecanceruk.org/for-health-professionals/our-projects/nursing-workforce- survey-key- results accessed on 04/02/2019
    • Frankland, J. et al. (2017) Follow-up care after treatment for prostate cancer: protocol for an evaluation of a nurse-led supported self-management and remote surveillance programme. BMC Cancer 17 (656) [Online] available at: https://bmccancer.biomedcentral.com/articles/10.1186/s12885-017-3643-4 accessed on 04/02/2019
    • Downing et al. Quality of life in men living with advanced and localised prostate cancer: A United Kingdom population-wide patient-reported outcome study of 30,000 men. Lancet Oncology. 2019. (In Press)
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