PaEdiatric Rheumatology FramEworK for Technology enabled care

Study Background

Children and Young People (CYP) with rheumatological problems like arthritis, can have a range of difficulties, such as painful, stiff joints. These problems come and go and can stop CYP attending school or college. CYP in rheumatological services usually take powerful medications with severe side effects and so need to be regularly cared for by specialist clinical teams. There are over 80 different conditions within the paediatric rheumatology umbrella. Arthritis is the commonest of these conditions with over 12,000 CYP affected in the UK.

Sometimes, specialist clinical teams are a long way from CYP’s homes and so families have the burden of travel and more time away from school and work. CYP and parents report that when their (CYP) condition is good, they do not always see the value in regularly attending the hospital in person. 

Being mindful of the rate of technological growth outside of the clinical environment, families have questioned whether healthcare technologies could be used to support more virtual care to reduce travel and time off school and work. Healthcare professionals have expressed concern that some parts of the physical examination couldn’t be performed online. The PERFEKT study asks how Technology Enabled Care (TEC) can balance the needs and concerns expressed by families and healthcare teams by suggesting a framework that individual services can use to provide care that is PERFEKT for CYP.

PERFEKT Aim

The overall aim of the study is to find out how healthcare teams can best provide Technology Enabled Care to support virtual clinics in paediatric rheumatology. The findings will be incorporated into a framework acting as guidance for clinical teams.

For the purposes of this study, Technology Enabled Care (TEC) is a collective term and is defined as:

“telecare, telehealth, telemedicine, mobile (m)-, digital- and electronic (e) health services”

PERFEKT Work Packages

Work Package 1

A thorough search of what has already been written about undertaking Technology Enabled Care for Children and Young People cared for globally in rheumatology services.

Work Package 2

Work Package 3

Work Package 4

Heathers Biography

Heather is a Senior Children’s Research Nurse at Leeds Children’s Hospital. She has supported clinical research since the formation of the National Institute for Health and Care (NIHR) Clinical Research Networks in 2006. Heather is a registered children’s nurse with a clinical background in general paediatrics and caught the research bug whilst undertaking her BSc (Hons) in Nursing Studies dissertation at the University of Surrey.

Feeling inspired, Heather worked with Professor Imti Choonara at the University of Nottingham. Here, Heather learned vital qualitative research skills and experience whilst interviewing children and young people about taking part in research.

Heather is a NIHR Good Clinical Practice facilitator and has enthusiastically taught many healthcare professionals the importance of good research governance. Wanting to look beyond projects with children, Heather became a member of Leeds West Research Ethics Committee to learn about a wide variety of research projects and ethical dilemmas.

In 2017/18 Heather was thrilled to receive a HEE/NIHR MSc (Clinical Research Methods) fellowship at the University of Leeds and be supported by Professor Veronica Swallow and Dr Joanna Smith. It was Heather’s MSc dissertation project that led to her founding the ‘Leeds Young Research Owls’ – a Young Person’s Advisory Group for research; a group that she still leads today (https://generationr.org.uk/leeds-young-research-owls/).

Heather was awarded an NHS R&D North West pre-doctoral bridging funding supported by Professor Anthony Redmond at the University of Leeds. She was honoured to become a ‘NIHR 70@70’ nurse to build the research culture amongst nurses and midwives locally and nationally. Heather has also acted as Principal Investigator for three studies (COVID Nurse, Little Journey and the UK national lupus registry).

In continuing to be supported by Professor Redmond and multi-disciplinary supervisors, Heather was successful in gaining a HEE/NIHR Doctoral Fellowship in April 2023. The Doctoral Fellowship is supporting Heather to undertake her PhD studies at the University of Leeds and ultimately run the PERFEKT study!