Parastomal hernia is a very common complication for people with a stoma but we know that it can have a significant impact on their quality of life. Some people go on to have a surgical repair, but the success rates are low, and often people will need more than one operation further impacting on their quality of life. This study will provide us with a wealth of data on parastomal hernia repair, and more importantly the outcomes as reported by the patients themselves. This will allow us to provide patients with more detailed information when considering a parastomal hernia repair, as well as allow us to look at what surgical treatments may provide better outcomes. Prof. Tom Pinkney
Lead Investigator, PROPHER Study
Problem addressed, background and strategic significance
Stoma formation is often necessary after bowel surgery. A common complication of a stoma is a parastomal hernia (PSH) – caused by a weakness in the abdominal muscle which results in a local bulge next to or behind the stoma. A PSH can cause skin irritation, problems with getting a stoma bag to stick, as well as pain and other more serious complications such as bowel obstruction. These issues often have a negative impact on a patient’s quality of life, but doctors do not know how best to treat PSH, and which patients require surgical intervention. In those who proceed to surgery, we are not sure of the best technique, including which reinforcing mesh should be used and exactly how and where it should be placed.
Using a secure online system, surgeons internationally will enter data on all patients seen with a PSH, including both those having a surgical repair, and those who decide to undergo conservative treatment. If an operation is performed, detailed information on the technique used will be recorded. Patients will then be asked to provide information on their PSH symptoms and quality of life over the following 12 month period. Patients will tell us if their treatment was successful overall, which will include establishing their most important symptom at entry and asking if this has been improved at the end, and also if they have any regret over the treatment choices made. Patients will provide their data via a simple data collection system working primarily via their mobile telephone using text messages and notifications in their native language; this system will link their reports to their doctor-provided data in an entirely anonymised manner.
Hoped for results of this research
This large study will allow us to link ‘real-world’ PSH treatment with patient-reported outcomes to assess which patients do well with conservative or surgical intervention, and to unpick the techniques associated with the best outcomes. It will also allow us to explore the current symptoms experienced by patients with a PSH and how these change over time.
What further plans are proposed for future development?
This project will improve our knowledge of PSH symptoms and treatments. It will allow us to counsel patients better, and help us pick the best treatment for patients suffering from a PSH.
This project is funded jointly by the Ileostomy & Internal Pouch Association and Kingston Trust CIO