Disclosure and Ankylosing Spondylitis - version 1

  • Research type

    Research Study

  • Full title

    Experiences of disclosure and non-disclosure of diagnosis in people with ankylosing spondylitis/axial spondyloarthritis

  • IRAS ID

    180336

  • Contact name

    Rudresh Shukla

  • Contact email

    rshukla@nhs.net

  • Sponsor organisation

    Wrightington Wigan and Leigh NHS Foundation Trust

  • Duration of Study in the UK

    0 years, 4 months, 30 days

  • Research summary

    Ankylosing spondylitis (AS)/axial spondyloarthritis (Axial SpA) is a chronic inflammatory condition that typically affects people from a young age and often has a detrimental impact on their health, wellbeing and work productivity. It usually affects individuals before the age of 40. There is currently little understanding of why these individuals do not disclose their diagnosis. The aim of this study is to identify individual experiences of disclosing their diagnosis of AS/axial SpA to different groups such as employers, colleagues, family and healthcare professionals. This will be done by identifying suitable individuals who will then be asked to participate in an interview. This study will offer deep insights into factors that lead to non-disclosure behaviour in this condition that ultimately leads to withdrawal from work and adversely impacts their social lives.

  • REC name

    North West - Liverpool Central Research Ethics Committee

  • REC reference

    15/NW/0956

  • Date of REC Opinion

    5 Jan 2016

  • REC opinion

    Further Information Favourable Opinion