TrueNTH

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 [email protected]

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

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

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

References