Proof-of-concept study of ‘JIA Toolbox’ for Children and Young People

• Research type

  Research Study

• Full title

  Exploring the potential of ‘JIA Toolbox’ in improving the independence and functional ability of Children and Young People (CYP) with Juvenile Idiopathic Arthritis (JIA)

• IRAS ID

  307122

• Contact name

  Ursula Ankeny

• Contact email

  u.ankeny@shu.ac.uk

• Sponsor organisation

  Sheffield Children's NHS Foundation Trust

• Duration of Study in the UK

  0 years, 6 months, 0 days

• Research summary

  Juvenile Idiopathic Arthritis (JIA) is a long-term rheumatic disease affecting approximately 15,000 children and young people (CYP) in the UK. JIA causes ongoing/long-term joint inflammation, pain, and stiffness, making everyday activities difficult. JIA has been shown to impact physical, social, emotional, and educational development. According to a survey we conducted in 2018, CYP with JIA find current product aids difficult to use, stigmatising and patronising.

  This overall project aims to further develop and conduct a 'real-world' proof-of-concept assessment of a suite of three prototypes, known as 'JIA Toolbox '. These prototypes collectively aim to improve CYP's independence and functional ability.

  The project is broken down into 5 Work Packages (WP):
  WP1: Project set up
  WP2: Co-design and prototype development
  WP3: Production of prototypes
  WP4: Proof-of-concept study
  WP5: Dissemination

  A submission to university ethics for WP2 is currently being reviewed. WP2 is classed as co-design, not research and therefore does not require IRAS. This application is seeking ethics for WP4 - Proof-of-concept study. From this point on, 'the study' will refer to WP4.

  WP4 aims to assess the potential value of 'JIA Toolbox' in improving CYP with JIA's independence, functional ability and therefore overall condition management, through a proof-of-concept study. The study will involve recruiting 10 CYP with JIA aged 7-16 and their parent/guardian from Sheffield Children's Hospital. Baseline data on CYP's lived experience of JIA will be collected over 2 weeks, through self-reporting. They will then use the prototypes in 'JIA Toolbox' for a period of 5 weeks. Lived experience data on condition management will continue to be self-reported and the prototypes will collect usage data independently. Post-intervention data will then be collected for a further 2 weeks. Interviews will then be conducted with participants to further capture their experiences during the study.

• REC name

  East Midlands - Nottingham 1 Research Ethics Committee

• REC reference

  22/EM/0036

• Date of REC Opinion

  24 Mar 2022

• REC opinion

  Further Information Favourable Opinion