Fatigue assessment in hidradenitis suppurativa

  • Research type

    Research Study

  • Full title

    Content validation of PROMIS 8a in hidradenitis suppurativa

  • IRAS ID

    332166

  • Contact name

    Hannah Wainman `

  • Contact email

    hannah.wainman@nhs.net

  • Sponsor organisation

    Zealand Univeristy Hospital

  • Duration of Study in the UK

    0 years, 6 months, 1 days

  • Research summary

    Hidradenitis suppurativa (HS) is a chronic, inflammatory skin disease that is associated with significant disability due to its signs and symptoms. In addition to the pain and subsequent loss of mobility, patients with HS often suffer from draining HS lesions, itch and fatigue.

    Fatigue ( defined as an overwhelming, debilitating, and sustained sense of exhaustion that interferes with daily activities, work, and family or social roles) was judged as critical to include in every future hidradenitis suppurativa (HS) trial by 82% of patients and 37% of experts included in the HIdradenitis SuppuraTiva cORe outcomes set International Collaboration (HISTORIC) core domain set consensus process. To measure fatigue in future research in HS a tool needs to be created and justified. Tools already exist for other inflammatory diseases such as joint diseases.

    We want to investigate if the Patient Reported Outcome Measurement Information System (PROMIS 8a) is effective at measuring fatigue in HS patients.
    We aim to do this by performing online surveys with HS patients to investigate how understandable and relevant PROMIS 8a is. Patients will be invited to take part from Denmark, the USA, England and Wales.

  • REC name

    Yorkshire & The Humber - Leeds West Research Ethics Committee

  • REC reference

    23/YH/0221

  • Date of REC Opinion

    6 Dec 2023

  • REC opinion

    Further Information Favourable Opinion