Quality of Life in patients with an ileal anal pouch

  • Research type

    Research Study

  • Full title

    Study of Quality of Life and Healthcare Utilisation in Patients with Ulcerative Colitis Undergoing Ileal Pouch Surgery: Prospective Observational Study. (Soqcs Study)

  • IRAS ID

    197660

  • Contact name

    Jonathan Segal

  • Contact email

    jonathansegal1@nhs.net

  • Sponsor organisation

    London Northwest Healthcare NHS Trust

  • Duration of Study in the UK

    2 years, 8 months, 4 days

  • Research summary

    Ulcerative colitis (UC) is an inflammatory condition of the colon associated with diarrhoea, rectal bleeding, abdominal pain, faecal incontinence, fatigue and abdominal pain. These symptoms can adversely affect schooling, work attainment, psycho-social well-being and collectively contribute to a substantially reduced health related quality of life (HRQoL). Despite multiple medical treatments a procedure to take out the colon called a proctocolectomy is necessary in 10-30% of patients after a decade of disease, either due to medically refractory disease, fulminant disease or development of dysplasia (changes that can lead to cancer).

    Proctocolectomy with ileal pouch anal anastomosis (IPAA), referred to in the remaining document as a “pouch”, is considered the procedure of choice in patients with UC refractory to medical therapy. This is where a part of the patients’ small bowel is mobilized and utilized as a new rectum. This approach is popular amongst patients since it restores intestinal continuity and avoids the necessity for a long-term stoma.

    Study Aims
    Use a variety of questionnaires to evaluate the health-related quality of life outcomes, complications, work productivity and overall healthcare resource utilisation for patients with UC undergoing IPAA surgery, before and at serial time-points after surgery.

    This study will be the first to longitudinally follow up patients’ quality of life in those who undergo restorative proctocolectomy with IPAA. This will serve to understand how quality of life changes over time for a patient undergoing this surgery. It will allow us to better inform patients considering this procedure and offer alternatives with expectations on how each will affect their quality of life in years to come.

  • REC name

    East of England - Cambridge South Research Ethics Committee

  • REC reference

    16/EE/0207

  • Date of REC Opinion

    24 May 2016

  • REC opinion

    Further Information Favourable Opinion