Title:

Using clinical and consumer devices to enhance screening for atrial fibrillation

Project abbreviation:

U-CCODES-AF

Project Description:

Atrial fibrillation (AF) is an abnormal heart rhythm which increases the risk of stroke when untreated. Consequently, AF screening programmes are now being developed. These involve taking home a handheld clinical device, and checking your heart rhythm twice a day for a fortnight to search for AF. It may be possible to improve this process by using consumer devices such as fitness bands to check for AF in daily life.

Methodology description:

The aim of this project is to establish how clinical and consumer devices can best be used to identify AF. Firstly, we will establish criteria for detecting possible AF from fitness bands. Secondly, we will develop a 30 second test to identify patients who are unlikely to have AF, so they do not have to use a device at home. Thirdly, we will assess different devices for home rhythm monitoring.

Project organisation

Start date:

24th February 2020

End date:

23rd February 2025

Contact person:

Dr Peter Charlton

Contact Details:

Primary Care Unit
Strangeways Research Laboratory
Worts Causeway
Cambridge
CB1 8RN
UK
Telephone: (01223) 331063
E-mail: pc657@medschl.cam.ac.uk

Collaborative:

This project is conducted in collaboration with the Research Centre for Biomedical Engineering at City, University of London

Funding information

Funding Organisation:

British Heart Foundation

Further Information, References and Publications

Title:

Adapting, Disease self-management and Acknowledgement by Psychosocial Targeted interventions

Project Abbreviation:

ADAPT Trial

Project Summary:

Over 5% of the population will develop an autoimmune rheumatic disease at some stage during their lives, with fatigue reported as the most prevalent and life-changing symptom.

ADAPT is a randomised controlled trial to investigate the effectiveness of online instructor-led group exercise classes (Pilates or Tai Chi, 50 minutes, twice a week over 8 weeks) on fatigue (primary outcome), depression, anxiety, resilience, cognitive dysfunction, physical activity and quality of life.)

Project objectives:

Background

420 patients with rheumatological diseases will be recruited and randomised into one of three groups:

1) Pilates classes 2) Tai Chi classes, 3) Control (usual care).

Participants will complete questionnaires on their health and quality of life at baseline, 8 weeks, 16 weeks, and 6 months.

In addition, the ADAPT trial will:

Evaluate the cost and cost-effectiveness of online classes versus usual care, from the perspective of the NHS, patients and families.

Gather participant views and experiences of the online exercise classes via in-depth qualitative interviews.

Project organisation

Start date:

1st April 2025

End date:

31st March 2027

Contact person:

Dr Melanie Sloan and Prof Felix Naughton

Contact Details:

Primary Care Unit
Strangeways Research Laboratory
Worts Causeway
Cambridge
CB1 8RN
UK

Mel Sloan (Principal Investigator), mas229@medschl.cam.ac.uk

Miranda Van Emmenis (Trial Coordinator), mv404@medschl.cam.ac.uk

Project contributors:

Multidisciplinary team encompassing patient partners, rheumatology, neuropsychiatry, health psychology and health economics.

Partner institutions:

University of East Anglia, Kings College London

Funding information

Funding Organisation:

NIHR

Funding amount:

£493,000         

Further Information, References and Publications

Title:

Investigating neuropsychiatric symptom prevalence and impact in rheumatology and autoimmune patient experiences.

Project Abbreviation:

INSPIRE

Project Summary:

The INSPIRE project consists of a series of mixed-methods studies investigating the experiences of rheumatology and other autoimmune disease patients. The INSPIRE team consists of researchers, patients, charity partners and clinicians from a range of specialities, and we feel that this multi-disciplinary approach is key to our aim of improving patient experiences and care.

Recent studies have investigated the prevalence and impact of nightmares, hallucinations and cognitive dysfunction among rheumatology patients. Current projects are exploring medication (MEDINSPIRE) and flares (INSPIRE-Flare) in autoimmune diseases. MEDINSPIRE is exploring the types and combinations of medications used in different disease groups, comparing current and ever use of medications between disease groups and investigating the wellbeing of patients while undergoing these treatments. INSPIRE-Flare is investigating flare triggers, preventers and prodromes (‘bad signs’ that a flare is imminent) in autoimmune disease patients. Our survey will ask patients about a range of factors which may trigger, prevent or precede a flare, as well as related topics such as how patients define a flare and the support they rely on for managing flares.

Project objectives:

The research conducted by the INSPIRE project is aimed at improving patient experiences and care. Our current projects aim to do this by increasing understanding about the effects of medication and the triggers and progression of symptoms in flares, to improve disease and flare management.

Specifically, MEDINSPIRE aims:

To identify the types and combinations of medication and describe their lifetime and current prevalences;

To compare the types and combinations of medication between patients’ groups (i.e., disease and demographic groups);

To compare the level of well-being of patients within each SARD group during therapy applying the combinations of medication;

To measure and compare the association of current and “ever” use of different medications with patient mental health and wellbeing.

INSPIRE-Flare aims:

To investigate and compare the prevalence of different triggers and preventers of flares in different SARDs and other autoimmune diseases.

To investigate and compare the differences in disease progression symptoms (including prodromes) in different SARDs and other autoimmune diseases.

To investigate whether triggers, preventers and prodromes are the same for each flare for each patient.

To understand how patients identify triggers, preventers and prodromes.

To understand whether patient awareness of triggers, preventers and prodromes improves management of flares.

Project impact:

Our previous studies have increased awareness about invisible symptoms experiences by rheumatology patients, such as nightmares and hallucinations. They have also found that clinicians underestimate the prevalence of neuropsychiatric symptoms in rheumatology patients and highlighted the benefits of inter-speciality communication and patient partnership in care. Other studies have explored the long-term effects of misdiagnosis on patients’ mental health, help-seeking behaviour and medical relationships.

Our earlier focus was on the attribution of neuropsychiatric symptoms. Although there are no definitive answers to the challenging attribution question, it was of great importance due to the different treatment requirements. For example, if symptoms are largely attributed to the direct impact of the diseases on the brain/nervous system it may require immunosuppression but if symptoms are medication induced, unrelated, or indirectly related (e.g. depression due to living with an unpredictable life-changing disease) then different treatment plans may be required.  

We hope that MEDINSPIRE will increase understanding about the prescription of various types and combinations of different medications for different disease groups. It will also shed light on the effects of different medications on disease symptoms and other outcomes such as mental health and wellbeing.

We hope that INSPIRE-Flare will improve awareness about the range of factors which can trigger and prevent flares and the prevalence of each of these in different autoimmune diseases. We hope that this information will help patients and clinicians to manage flares, reducing their frequency and impact. INSPIRE-Flare will also explore the symptoms which precede flares (prodromes) and compare these between disease groups. We hope that improving understanding about prodromes will enable early identification and treatment for flares.

Project organisation

Start date:

1st January 2020

End date:

1st February 2027

Contact person:

Dr Melanie Sloan

Contact Details:

Primary Care Unit
Strangeways Research Laboratory
Worts Causeway
Cambridge
CB1 8RN
UK

Project contributors:

Martha Piper, Efthalia Massou, Dr Alice Tunks, Prof David D’Cruz, Sydnae Taylor, Kaira Kuhu Naidu, James Brimicombe, Prof David Jayne, Prof Guy Leschziner, Prof Felix Naughton, Dr Mervi Pitkanen, Dr Thomas Pollak, Ellie Dalby, Lucy Calderwood Dr Michael Zandi, Prof James,  Bourgeois, Michael Bosley, Dr Jasmine Yan, Sam Sloan, Dr Sharmilee Gnanapavan, Dr Arvind Kaul, Prof Alessandra Bortoluzzi, Dr Laura Andreoli, Prof Caroline Gordon, Arjoon Arunasalam, Avni Varshney, Uisce Pargiter

Partner institutions:

Kings College London, Barts, NHNN, Guys and St Thomas’, UEA, St Georges’, plus international collaborators in California (UCLA) and Italy.  

Funding information

Funding Organisation:

The Lupus Trust

Further Information, References and Publications

Title:

Personalised care and patient experiences in hospital near end of life

Project Abbreviation:

PERSPEX

Project Summary:

Dr Kingdon will conduct a review of current UK health policy, an analysis of survey data from bereaved relatives, and a hospital-based ethnography involving observing and speaking to patients thought to be in the last year of life, their families and healthcare professionals involved in their care. Through this, he aims to gain insights into how ‘personalised care’ is conceptualised by these different groups; the extent to which delivering or receiving personalised care is a priority for staff, patients and families; the degree to which hospital inpatients are actually receiving ‘personalised care’, and the impact on patients when they receive personalised care or not.

Project objectives:

We anticipate that the project will result in a clear, clinically relevant and co-created definition of personalised care as related to patients with palliative care needs; an understanding of the barriers and facilitators of integrating personalised care into routine care of patients with palliative care needs in the hospital inpatient setting; an understanding of the current landscape of UK hospital-based end of life care and the degree to which patients receive personalised care; an understanding of patients’ and families’ perspectives on important unanswered questions relating to personalised care for patients with palliative care needs; and an understanding of which elements of personalised care are particularly important to patients and families. We anticipate this evidence will inform the design of undergraduate and postgraduate training curricula as well as standards for Integrated Care Boards and Trusts regarding personalised palliative care.

Project impact:

Through dissemination of this project’s results, we anticipate that:

Health leaders and clinicians will have access to more evidence and more evidence-based resources regarding the importance of and the implementation of personalised palliative care.

This research will add substance regarding narratives about personalised care in the NHS and beyond, thus policymakers will have access to additional evidence regarding implementation of existing policy and development of new policy in this field.

Patients will be treated by clinicians with access to aforementioned evidence, leading to a higher likelihood of positive experiences of care.

Start date:

18th October 2024

End date:

18th October 2027

Principal Investigator:

Dr Arjun Kingdon

Project contributors:

Prof. Stephen Barclay, Dr Sarah Yardley, Prof. Jonathan Silverman, Prof. Robbie Duschinsky, Dr Anna Spathis

Funding information

Funding Organisation:

The Edward Showler Foundation

Funding amount:

£100,000

Further Information, References and Publications

Title:

JAMS - Injectable Medication Study

Project Summary:

This interdisciplinary project seeks to understand the human and system factors involved in the safe, effective and timely use of injectable end-of-life symptom control medications for adults dying at home. We are advancing an inclusive design research methodology and identify with stakeholders where and how systems for using injectable medications can be improved.

Methods: Drawing on engineering, patient safety and social science disciplines, we will use innovative systems-driven inclusive design methods to examine the human and system factors involved in the use of injectable end-of-life medications; where and how this complex adaptive system can be improved will be investigated through three sequential stages.

Stage 1. Mixed-methods analysis of reported patient safety incidents occurring in England and Wales using the National Reporting and Learning System (NRLS) database.

Stage 2. Longitudinal patient-centred case studies exploring the views, experiences and interactions of patients prescribed medications, their family caregivers and clinicians.

Stage 3. Stakeholder focus groups with patients, family caregivers and healthcare teams exploring key issues, generating further knowledge of systems for using medications and how these can be improved.

Analysis (Stage 1) and fieldwork (Stage 2) are currently underway.

Project organisation

Start date:

8th April 2024

End date:

15th January 2027

Contact person:

Dr Ben Bowers

Project contributors:

Dr Rosanna Fennessy, Dr Sioned Gwyn (Swansea University), Prof. Andrew Carson-Stevens (Cardiff University), Prof. Kristian Pollock (University of Nottingham), Prof. John Clarkson (Department of Engineering, University of Cambridge), Prof. Stephen Barclay.

Partner institutions:

Department of Engineering, University of Cambridge; University of Nottingham; Cardiff University

Funding information

Funding Organisation:

Wellcome Trust Early Career Award [Ben Bowers] and NIHR ARC Affiliated Study

Title:

Improving communication of prognostic uncertainty in palliative and end of life care contexts: A realist review

Project Summary:

When a person has a life-limiting illness they often want to know how long they have left to live. However most serious illnesses are unpredictable and increasingly people live with multiple illnesses, making it difficult to know how much time they have left (prognosis). It is important to communicate uncertainty about prognosis, as misunderstandings can have financial, personal and emotional implications for the patient and their family. Researchers and clinicians have shared multiple examples and ideas about how best to do this, but we do not know what the best approaches to communicating uncertainty about prognosis are.

We are conducting a realist evidence synthesis regarding communication of prognostic uncertainty so that we can identify what ‘works’ in such conversations. This approach involves developing an initial theory of what works when communicating uncertainty about how much time a person has left in different contexts, then searching for literature, extracting information from the literature and using it to refine and develop the theory further.

We will use the findings to develop practical recommendations for communication of uncertainty about prognosis, which can be used to improve how these conversations are conducted in practice.

Project objectives:

Research aim: To understand how to improve communication of prognostic uncertainty in (potential) palliative and end of life care settings.

Research question: How, why, for whom, and in what contexts does communication of prognostic uncertainty for palliative and end of life care patients “work” (or not)?

5.Project impact (the impact that the project has delivered or seeks to achieve, 150-200 words)Multi Line Text.

Findings will be shared with hospice stakeholders and service users, political leaders and civil society groups. The review outcomes and recommendations (including the developed programme theory) will be shared via the Research Team’s clinical networks (such as Coventry and Warwickshire Integrated Care Board; NHS England Palliative and End of Life Care Team; ARC East of England and the National Association of Palliative Medicine), as well as via Marie Curie’s connections.

Our academic outputs will be disseminated to health and social care researchers via conference presentations (e.g. Marie Curie annual conference) and a peer-reviewed article published open access.

These findings will also have direct relevance to health professional education and we plan to include them in undergraduate and postgraduate medical and nursing training at the Universities of Cambridge, Warwick and Birmingham and will advocate for them to be included in relevant national curricula. We will produce a simple one-page summary of results for sharing with healthcare professionals and run an educational event for Marie Curie clinical staff, informed by the review findings and how they can be implemented in practice.

Start date:

1st April 2024

End date:

30th June 2025

Principal Investigator:

Dr Simon Etkind

Project contributors:

John MacArtney, Katharine Weetman, Farhad Shokraneh, Katy Hyams

Partner institutions:

University of Warwick, University of Birmingham

Funding information

Funding Organisation:

Marie Curie

Funding amount:

£14,997

Project Title:

Screening for Atrial Fibrillation with ECG to Reduce stroke

Project Abbreviation:

SAFER Programme
 

Project Summary:

Atrial Fibrillation (AF) is a major risk factor for ischaemic stroke unless treated with anticoagulant medication. Detecting atrial fibrillation can be difficult because it often comes and goes (paroxysmal) and people may be asymptomatic.

Currently there is insufficient evidence to support the implementation of a national atrial fibrillation screening programme to reduce stroke.

The question we will be answering: is screening for AF effective and cost effective in reducing stroke and other key outcomes compared to current practice?

Project objectives:

Atrial fibrillation (AF) may not be associated with any symptoms, but is linked to increased risk of stroke, heart attack, dementia and premature death. About 10 in 100 (10%) of strokes happen in people unaware that they have atrial fibrillation. However, therapy with blood thinning medication (anticoagulant) is highly effective at reducing the risk.

At present, some GPs look for atrial fibrillation opportunistically by simply taking the pulse of patients, or using a diagnostic device such as a hand-held electrocardiogram (ECG). However, this is not done in a systematic way, and only in some general practices.

One problem with this approach is that some people do not have atrial fibrillation all the time but go into and out of an irregular heart rhythm (known as paroxysmal or intermittent AF). So in this research, participants (patients aged 70 or over recruited from GP practices) are loaned a handheld ECG recorder, provided by Zenicor, to record a single lead ECG repeatedly at home for 2-4 weeks.

SAFER is a large programme of research involving 250 GP practices in England and over 100,000 patients. Due to report in 2028, we will determine if screening does lead to fewer strokes, and whether this is a good use of NHS resources.

Project impact:

Many clinicians support screening for AF to reduce stroke, However there is currently insufficient evidence to support a national screening programme, and whether any harms associated with screening are outweighed by benefits.

We will determine if screening for atrial fibrillation leads to fewer strokes, and whether this is a good use of NHS resources. This will inform the decision about whether the NHS should offer a national atrial fibrillation screening programme.

Start date:

1st October 2018

End date:

31st March 2028

Principal Investigator:

Professor Jonathan Mant

Project contributors:

Simon Griffin, Steve Morris, James Brimicombe, Duncan Edwards, Andrew Dymond, Kate Williams, Rakesh Modi, Lina Massou

Partner institutions:

University of Bristol, University of Liverpool, University of Oxford, University of Sydney, University of Copenhagen, Karolinska Institutet

Funding information

Funding Organisation:

NIHR (School for Primary Care research and Programme Grant for Applied Research) and NHS England

Funding amount:

£7,000,000     

Further Information, References and Publications

SAFER website: https://www.safer.phpc.cam.ac.uk/

SAFER publications: https://www.safer.phpc.cam.ac.uk/trial-news/outputs/publications/

SAFER Trial news: https://www.safer.phpc.cam.ac.uk/trial-news/

 Title:

Proactive Risk Evaluation for the Early Detection of Breast Cancer in younger women

Project Abbreviation:

PREVENT-Breast

Project Summary:

Women at moderate or high risk of breast cancer are eligible for breast imaging prior to the start of population-based screening programmes to enable detection of breast cancer earlier. Data from clinical trials indicates that this reduces mortality from breast cancer in this group by 12-29%. However, only a small fraction (<10%) of these moderate or high-risk women are identified through current care in the UK and existing pathways exacerbate existing health inequalities. This project aims to generate recommendations for the implementation of risk-assessment and subsequent management and breast imaging of women under 50 years that are evidence-based, equitable and aligned with the needs of women and the wider healthcare service.

Project objectives:

Objective 1- To identify and co-design potential strategies for implementing BC risk assessment within clinical care.

1.1. Systems-based analysis with key healthcare and policy stakeholders to map current care pathways, identify potential implementation strategies across primary and secondary care and assess the capacity and readiness within the system for change.

1.2. Focus groups with population groups experiencing poorer-than-average health access, experience and/or outcomes, with British Pakistani and Black African women, women from low SES neighbourhoods, women with learning disabilities, and women with long-term mental health conditions.

1.3. Discrete choice experiment with members of the public to quantify the relative importance of different attributes of potential implementation strategies identified from the previous studies.

1.4. Co-design of implementation approaches to develop programme specifications and materials for the most promising approaches identified from the previous studies.

Objective 2- To evaluate the clinical effectiveness of risk assessment and implementation strategies.

2.1. Pilot study to ensure that all components of each approach to risk assessment are working properly

2.2. Randomised effectiveness-implementation study, with general practices as the unit of randomisation.

Objective 3- To estimate the cost-effectiveness and clinical impact of implementation strategies.  through modelling the potential for reductions in BC mortality resulting from early detection and the cost-effectiveness of the range of chosen strategies for implementation of risk assessment compared to current practice.

Objective 4- A workshop informed by the evidence generated by this project and other on-going studies with key stakeholders to identify the next steps for research, policy and practice.

Project impact:

This research will provide evidence for transformational change in how and when early breast cancer is diagnosed in young women. Through a series of linked studies, culminating in a workshop with key stakeholders, we will advance scientific knowledge about organisational readiness for implementation of risk assessment and how best to engage traditionally underserved groups, conduct the first effectiveness study of implementing proactive BC risk assessment in this age group within the UK, and provide evidence-based guidance to policy makers about implementation approaches that are cost-effective, equitable and aligned with the needs of women and the wider healthcare service. By developing strategies to identify women at above-population level risk prior to entry into population-based BC and offering them earlier breast imaging, we will contribute to enabling interception through the detection of early cancers. The effectiveness trial and the cost-effectiveness analysis will increase our understanding of how to use information on hereditary cancers and risk to best target early detection programmes. Our strong focus on groups who typically experience poorer-than-average health access, experience and/or outcomes will seek to identify, understand and develop strategies to address inequalities in cancer early detection.

Start date:

September 2024

End date:

February 2027

Principal Investigator:

Dr Juliet Usher-Smith, University of Cambridge

Professor David French, University of Manchester

Project contributors:

Dr Maria Valasaki (University of Cambridge)

Dr Lily Taylor (University of Cambridge)

Dr Rebecca Dennison (University of Cambridge)

Dr Victoria Woof (University of Manchester)

Dr Francisca Stutzin-Donoso (University of Cambridge)

Dr Sacha Howell (University of Manchester)

Professor Antonis Antoniou (University of Cambridge)

Dr Stephanie Archer (University of Cambridge)

Professor Steve Morris (University of Cambridge)

Professor Marc Tischkowitz (University of Cambridge)

Professor Doug Easton (University of Cambridge)

Mr Stephen Sharp (University of Cambridge)

Dr Penelope Moyle (University of Cambridge)

Dr Kathryn Taylor (University of Cambridge)

Professor Gareth Evans (University of Manchester)

Dr Lorna McWilliams (University of Manchester)

Dr Stuart Wright (University of Manchester)

Partner institutions:

University of Manchester

Funding information

Funding Organisation:

International Alliance for Cancer Early Detection (ACED)

Funding amount:

£498,831

Further Information, References and Publications

 Title:

Bowel Star UK

Project Summary:

Bowel Star UK is a cohort study based in England and Scotland generating evidence for risk-stratified screening intervals within bowel cancer screening. The programme will review the available evidence and modelling data before establishing a cohort to trial screening intervals informed by faecal immunochemical test (FIT) results. It will incorporate personal bowel cancer risk information and polygenic risk scores (PRS) to inform future risk modelling for bowel cancer as well as cost-effectiveness research and a process evaluation. Public acceptability is central to this body of work and interviews and surveys will be conducted with cohort study participants to explore their views and considerations toward risk-stratified bowel cancer screening.

Project objectives:

1. Examine the feasibility and outcomes of stratified bowel cancer screening based on faecal haemoglobin (FHb) concentration.

2. Examine whether a risk assessment process based on age, sex, PRS, family history and lifestyle factors can improve screening performance, over and above stratification by FHb alone.

3. Explore the acceptability of these approaches to participants.

4. Investigate the impact of stratified screening on organisational processes and costs within NHS bowel cancer screening, health inequalities and engagement of diverse communities.

5. Investigate whether stratified bowel cancer screening within NHS screening programmes can lead to improvements in cost-effectiveness.

Project impact:

This work will assess the patient and systems-level impact of incorporating risk-stratified bowel cancer screening according to FIT, the utility of additional risk information and the acceptability, feasibility and cost-effectiveness of such an approach. This will generate the necessary evidence for implementing risk-stratified screening for bowel cancer in the UK.

Start date:

1st May 2025

End date:

1st April 2029

Principal Investigator:

David Weller (University of Edinburgh), Peter Sasieni (Queen Mary University of London)

Project contributors:

Juliet Usher-Smith, Rebecca Dennison, Lily Taylor, James Kang (Cambridge)

David Weller, Angela Niven, Debbie Cavers, Christine Campbell, Rachel Shrigley (Edinburgh)

Peter Sasieni, Joy Li, Dharmishta Parmar, Rhian Gabe, Michael King (QMUL)

Christian von Wagner, Jazzine Smith, Sophia Harmer, Judit Kovacs (UCL)

Joanne Cairns, Hannah Miles (HYMS)

Chloe Thomas (SCHaRR)

Partner institutions:

University of Edinburgh

Queen Mary University of London

UCL

Hull York Medical School

Sheffield Centre for Health and Related Research

Funding information

Funding Organisation:

Cancer Research UK

Funding amount:

£ £2,499,949.78

Further Information, References and Publications

 Title:

Evaluation of pilots of reduction in the threshold of FIT from 120 to 80 within the bowel cancer screening programme

Project Abbreviation:

FIT@80

Project Summary:

The Bowel Cancer Screening Programme (BCSP) in England is reducing the threshold for referral following a faecal immunochemical test (FIT) to 80ug/g, as evidence by UK National Screening Committee (UKNSC) guidance. Lowering the referral threshold will increase the sensitivity of the FIT test, diagnosing and preventing more bowel cancers. Delivering this represents a significant challenge to the BCSP and endoscopy services in particular. Therefore, a comprehensive service evaluation at early-adopter sites is required to identify and understand the systems, workforce and delivery models required across both symptomatic and screening pathways ahead of nationwide implementation.

Project objectives:

1. Evaluate whether endoscopy transformation within the symptomatic pathways leads to endoscopy capacity being spared and whether this is utilised by the BCSP.

2. Evaluate the barriers and enablers to implementation at sites where it is expected that a referral threshold of 80ug/g will be challenging.

3. Evaluate the impact of an 80ug/g threshold on operational performance and patient outcomes, including bowel cancers and high-risk adenomas.

Project impact:

This service evaluation will develop learnings that apply to screening and symptomatic endoscopy services as they transition to a reduced screening referral threshold of 80ug/g. The final report will be used to support sites across England as they implement the change and produce recommendations for national policy leads responsible for delivering the programme.

Start date:

1st March 2025

End date:

31st August 2026

Principal Investigator:

Agnė Ulytė, Frances Wu (RAND Europe)

Juliet Usher-Smith, Nora Pashayan (University of Cambridge)

Project contributors:

Saoirse Moriarty, Kayleigh Sharp, Stephanie Stockton, Sorana Bucseneanu (RAND Europe), Nora Pashayan, Lily Taylor, James Kang (Cambridge)

Partner institutions:

RAND Europe

Funding information

Funding Organisation:

NHS England

Funding amount:

£449,508.13

Further Information, References and Publications

 Title:

Development, validation and feasibility testing of a new prediction tool (PREDICT-kidney) to promote informed decision-making about kidney cancer follow-up care

Project Abbreviation:

PREDICT-kidney

Project Summary:

The aim of this project is to develop a new resource to support decision-making about follow-up care after surgery for localised RCC cancer.

Project objectives:

Specific objectives include:

WP1:   Develop a new model to predict risk of recurrent disease that includes competing risks

WP2:   Externally validate the new model, and a comparison of performance with existing models

WP3:   Implement the new model in a new online tool, co-designed by patients and clinicians, to calculate and display risk of recurrence

WP4:   Assess feasibility of conducting a full trial of the new tool within hospital clinics.

Project impact:

This project addresses key gaps in the evidence around kidney cancer follow-up care and aims to improve patient experience of this pathway.  Outcomes will include a competing risks model for risk-stratified follow-up and an online tool to communicate patient risk. The new tool will provide a resource for clinicians when communicating decisions about follow-up care after surgery and, in the longer term, we plan to make this tool freely available to clinicians. We will also make the resources developed in the project available to other researchers.

Start date:

1st February 2024

End date:

31st May 2026

Principal Investigator:

Juliet Usher-Smith and Hannah Harrison

Project contributors:

Juliet Usher-Smith, Hannah Harrison, Georgia Stimpson, Grant Stewart, Chiara Re, Carley Batley, Jessica Kitt, Lily Taylor, Antonis Antoniou, Angela Wood, Panayiotis Laouris, Steph Archer (University of Cambridge)

Paul Pharoah (Cedars-Sinai Medical Centre, Los Angeles, CA, USA)

Alex Laird, James Blackmur (Western General Hospital, Edinburgh)

Axel Bex (Royal Free Hospital, London)

Partner institutions:

Cambridgeshire and Peterborough ICS

Funding information

Funding Organisation:

NIHR Research for Patient Benefit

Funding amount:

£256,056

Further Information, References and Publications