PaEdiatric Rheumatology FramEworK for Technology enabled care (PeRFekT): A protocol for a consensus study

Background

Children and young people (CYP) cared for in rheumatology services are largely managed in the outpatient environment. Conditions such as Juvenile Idiopathic Arthritis are usually chronic and complex in nature, necessitating input from a range of multidisciplinary healthcare professionals. Technology Enabled Care (TEC) practices in paediatric rheumatology can be varied and may have the potential to better support families and clinical teams in managing rheumatological conditions. CYP people are known to be able users of technology but evidence-driven guidance to maximise the potential for technology enabled care remains limited. Drawing on previous PhD work package findings, the aim of this current project is to develop guidance through a modified Delphi consensus exercise.

Methods

Findings from previous PhD work packages will be synthesised into a list of statements around the concept of technology enabled care. Following assembly of a Study Advisory Group, stakeholders will be approached to undertake two online modified Delphi technique rounds. For Round 1, stakeholders will indicate their level of perceived importance using a Likert scale, for each statement. Statements not reaching consensus will be voted on again during a second Round. Stakeholders will then vote, in order of priority, on all statements reaching consensus. Descriptive quantitative analyses will be used to describe minimal stakeholder credentials and to demonstrate >75% consensus. The top 10-20 statements will be included in the final guidance.

Discussion

All project risks and benefits have been considered, minimised, and presented as part of the Research Ethics Committee (REC) application to the School of Medicine at the University of Leeds (REC project reference 2550). Project dissemination is planned for traditional routes through appropriate academic journals and paediatric specialty-specific conferences. Further dissemination will take place following ongoing collaboration with Patient and Public representatives.

Trial registration

Not applicable