Health and Wellbeing

Dr Rhys Turner-Moore (PI) & Dr Kate Milnes (PI).

Funding: It's Our Day. £7,956.

Dr Trish Holch (Co-applicant) and radiotherapy colleagues from Leeds Cancer Centre Helen Melling (PI).

Funding: College of Radiographers, £10,000.

Professor Georgina Jones (PI) and colleagues.

Funding: Shire, £120,000.

Professor Georgina Jones (PI), Dr Rachael Moss, Dr Frances Darby, Dr Neda Mahmoodi and colleagues

Cancer, Fertility and Me is a project to develop a patient decision aid to better support women of childbearing age and diagnosed with cancer to make fertility preservation decisions.

Funding: Yorkshire Cancer Research, £250,000.

Dr Lisa Harkry (Co-applicant), Dr Mark Fabri (PI), & Colleagues (Co-Investigator).

Funding: Erasmus+ £360,000.00.

Adaptation and replication testing of the benefits of online psychological support for cancer survivors.

Dr Laura Ashley (Co-applicant) and colleagues from the University of Chester.

Funding: North West Cancer Research, £294,646.

ALIGN QuAlity of Life In Goldenhar SyNdrome

Understanding the quality of life impacts, and the information and support needs of UK families with lived experience of Goldenhar Syndrome. ALIGN QuAlity of Life In Goldenhar SyNdrome

Goldenhar Syndrome (GS) is an umbrella term for a wide range of soft tissue irregularities which affect the face, the vertebrae and body parts. It is rare and affects approximately 1 in 25,000 – 45,000 births. There is no known cause. While the clinical affects have been researched, the psychosocial impact of GS and the effects on the quality of life of parents, young adults and children has received little global attention. 

Align is led by Dr Trish Holch (Reader in Applied Health Psychology) with co-applicants Professor Georgina Jones and Rebecca Hitchen (research assistant and Goldenhar parent). The Align study has been jointly funded by the Sir Halley Stuart Trust and the Centre for Psychological Research. The study involved interviewing and surveying Goldenhar adults and teenagers, and parents who have a Goldenhar child, about their experiences.

As part of the study, the team have created a guide to support new parents and families, written from a parent’s perspective. It includes ideas and views from Goldenhar adults and teenagers involved in the research.  The family guide is supported by the Goldenhar UK charity.   The guide is now available to parents on the Goldenhar UK website and has been distributed to health professions within multidisciplinary teams across the NHS.

Suzanne Pitchford - Chair (Goldenhar UK)   

“The guide will benefit the Charity as it shows the entirety of Goldenhar in one complete document from what it can entail to the fact that anyone with Goldenhar is able to live life to the full”.

Dr Trish Holch (LBU), Ms Rebecca Hitchen (PPI) and Professor Georgina Jones (LBU).

Funding: Sir Halley Stuart Trust, £5,000.

NIHR Innovation for Innovation £1,476,915.00

Dr Trish Holch & Dr Ronan Miller (Co-Leads), Ben Bolton-Grant, Dr Apostolos Fakis, Ms Natasha Wimbledon, Miss Catherine Woolley, Mrs Heather Brigden-McLean, Mrs Nicola Maddy

Can the addition of a co-designed novel digital therapeutic solution for stammering to NHS speech therapy services be acceptable and feasible for parents/carers, clinical staff, and children?

Background

Stammering is a neurodevelopmental speech disorder that disrupts speech fluency and negatively impacts quality of life, social and professional development, and parental mental health. It occurs in 5-8% of children, typically between 2 and 6 years old, and persists after puberty in 1-2% of the general population. The male-to-female ratio is 4 to 1. arly intervention for Children who Stammer (CWS) is key, but in the UK access to treatment in the National Health Service (NHS) is severely restricted and with long waiting lists [2]. CWS care varies across the NHS, although it often occurs indirectly through parents/carers supported by Speech-Language Therapists (SLTs). Parents/carers learn to reduce anxiety and shame in CWS while encouraging communication. No digital solutions exist to provide ongoing support to parents/carers of CWS, and an unmet clinical need exists to help CWS and their families improve outcomes and prevent relapses or mental health complications.

Objectives

• Develop SuperPenguin (TRL7) addressing the needs of CWS, parents/carers, and SLTs.
• Perform randomised controlled feasibility study with parents/carers of children under 8 old and those aged 8-12 to assess the feasibility and acceptability of SuperPenguin in the NHS and to inform a definitive randomised controlled trial (RCT).
• Evaluate the regulatory and economic viability to develop a commercial and effective NHS adoption plan.

Methods

Data from semi-structured interviews and focus groups (with both SLTs and parents/carers) will drive SuperPenguin development. Three Develop-Build-Test-Learn cycles for each age group will be completed to ensure acceptability and reliability. A 2-arm randomised clinical feasibility study will be conducted across 3 NHS sites, recruiting parents/carers of CWS (N=68). Outcome measures include feasibility outcomes, and Palin Parent Rating Scales (PPRS). A preliminary analysis of the economic viability, value proposition, and Digital Technology Assessment Criteria for SuperPenguin will guide the development of a commercialisation/NHS adoption plan, as well as a regulatory roadmap to ensure SuperPenguin is compliant with UKCA/CE mark requirements (post-project).

Timelines for delivery

Impact and Dissemination

This project can positively impact NHS stammering pathways by addressing a significant unmet need, reducing demands on NHS services, and providing a more cost-effective treatment across the UK. Furthermore, the technology behind SuperPenguin may be developed to address other speech therapy conditions to benefit more patients. Findings will contribute to the evidence base regarding digital solutions for speech therapy and will be disseminated in scientific journals and through engaged charity partners.

The project runs from September 2024 to October 2027

The full list of project partners is: Leeds Beckett University, SuperPenguin , Stamma (formerly the British Stammering Association), Action for Stammering Children, South West Yorkshire Partnership NHS Foundation Trust, Derbyshire Community Health Services NHS Foundation Trust, Berkshire Healthcare NHS Foundation Trust. Derby Clinical Trials Support Unit , Health Innovation East Midlands, Centre for Healthcare Equipment & Technology Adoption

Dr Trish Holch (LBU), Ms Seren Hughes (PPI), and Professor Anne-Marie Bagnall (LBU).

Funding: Eve Appeal, £2,500.

Psychological self-management intervention. Dr Suzie Xu Wang (Co-applicant), Professor Maggie Lawrence (PI) at Glasgow Caledonian University and colleagues.

Funding: The Stroke Association: £364,694. 

Dr Jim Morgan (Principal investigator), Dr Matteo Curcuruto and Dr Trish Holch (Co-applicants)

A randomised controlled trial of clinical and cost effectiveness of Gonadotrophin Releasing Hormone Analogues with add back hormone replacement therapy versus repeat Laparoscopic surgery (The REGAL Trial).

Professor Georgina Jones (co-investigator) and colleagues.

Funding: Health Technology Assessment, £1.7m. PI: Dr Lucky Saraswat, University of Aberdeen.

Dr Ellie Willard

Quality of Life (QOL) in patients following video assisted thoracoscopic (VATS) resection or stereotactic ablative body radiotherapy (SABR) for treatment of non-small cell lung cancer.

Dr Trish Holch and colleagues (Co-applicants), Dr Cecilia Pompilli, Mr Kostas Papagiannopolus & Mr Alex Brunelli (NHS thoracic surgeons); Dr Kevin Franks & Dr Matthew Callister (Clinical Oncologists) and Professor Galina Velikova (Medical Oncologist University of Leeds.

Funding: Yorkshire Cancer Research. £200,000

The development and pilot testing of a patient decision aid to better support patients with ulcerative colitis choose between ongoing medical treatment and surgical treatment options (DISCuSS).

Professor Alan Lobo (Principal investigator), University of Sheffield. Professor Georgina Jones (co-investigator), Miss Anne-Mairead Folan and colleagues.

Funding: Crohn’s and Colitis UK. £120,000.

Professor Georgina Jones (co-investigator), Dr Nina Martin and colleagues.

Medical Research Council. PI: Professor Paul Kaye (University of York) 

Role guiding the scoping review and environmental scan.

Dr Lisa Harkry (Principal Applicant), Dr Trish Holch and Dr Suzie Wang (Co-applicants).

Funding: Wellcome Trust (£45,000).

A qualitative interview study with patients and clinicians to identify theory-based intervention targets, strategies and implementation options. Dr Laura Ashley (Principal investigator) and colleagues.

Funding: NIHR RfPB, £149,784.

Dr Trish Holch, Professor Georgina Jones and Dr Nova Deighton-Smith

Dr Suzie Wang, Professor Georgina Jones and Dr Laura Ashley.

Professor Georgina Jones, Dr Laura Ashley, Professor Brendan Gough, Dr Trish Holch, Dr Rachel Moss, Olivia Robinson and Dr Rhys Turner-Moore.

Dr Katie Dhingra and colleagues.

Read study here

Dr Suzie Wang

Dr Kirsty Budds and Professor Georgina Jones

Dr Kirsty Budds and Professor Georgina Jones

Dr Kirsty Budds

Dr Laura Ashley

Dr Laura Ashley

Dr Laura Ashley

Professor Brendan Gough and Lucy Eldred

Dr Trish Holch and Lucy King

Lucy King