Investigation of work-related outcomes in surgery for UC

• Research type

  Research Study

• Full title

  Investigation of work-related outcomes in surgery for ulcerative colitis (UC)

• IRAS ID

  352974

• Contact name

  Kapil Sahnan

• Contact email

  kapil.sahnan@nhs.net

• Sponsor organisation

  London North West University Healthcare NHS Trust

• Duration of Study in the UK

  1 years, 0 months, 1 days

• Research summary

  Following a subtotal colectomy for ulcerative colitis (UC), patients may opt to live with a permanent ileostomy, a continent ileostomy (Kock pouch) or explore restorative options, such as an ileo-anal pouch (IPAA) or an ileo-rectal anastomosis (IRA).
  After the subtotal colectomy, and with the diseased colon removed, Quality of Life (QoL) becomes central in further decisions about restorative surgery.
  The ability to work, without restrictions, is part of the overall QoL.
  Studies have assessed work and employment-related outcomes by using validated QoL instruments, like the SF-36 or the IBDQ, or by reporting on a variety of other work-related outcomes, such as restrictions and employment rates.
  According to a systematic review we have performed, these outcomes do not capture adequately the lived work experiences of patients and offer us limited insight on true restrictions. Also, given the heterogeneity in the choice of instruments, it is not feasible to make comparisons between different groups.

  To investigate this, we propose to first conduct qualitative research (semi-structured interviews) to explore the lived work experiences of patients undergoing different surgeries, and work in different settings.
  We will undertake interviews until saturation of themes is reached, with literature indicating this should be achieved with 20-30 participants.

  Following this, we propose to explore the elicited patterns and trends in a larger scale, by a nationwide survey of such patients. The survey will be developed based on the findings of the systematic review and the themes from the interviews.
  The current application

  For both studies, patients will be recruited via social media and patient support groups.

  The outcomes of this research will strengthen the body of evidence surrounding QoL after restorative surgery for UC.
  By integrating the results in our information delivery pathways, we expect to improve patients' understanding and aid decision-making, especially given their young age when considering such surgery.

  After initial review of the application and a provisional opinion, it has been recommended to only apply for approval for the semi-structured interviews, and apply for the survey at a later date, as a substantial amendment, when the full questionnaire is formulated.
  The research proposal is presented in full, but the current application only refers to the interview component.

• REC name

  London - Queen Square Research Ethics Committee

• REC reference

  25/PR/0398

• Date of REC Opinion

  5 Jun 2025

• REC opinion

  Further Information Favourable Opinion