Ulcerative colitis patients who have had a colectomy continue to experience symptoms, and 46% say that if they could go back in time, they would want more information on the treatment choices, according to a new patient survey.

Patients who have had a colectomy are more likely to suffer from the three biggest impacts of the disease on their lives – their emotional state, ability to get adequate rest/sleep and taking sick days off work – and they continue to experience UC symptoms, the most common being fatigue, abdominal pain and diarrhoea, says the study, which was commissioned and funded by MSD with the cooperation of patient group Crohn’s and Colitis UK (CCUK).

Moreover, only 10% of patients said that they felt they had control over the choice of having surgery or its timing.

The new research comes at a time when the National Institute for Health and Care Excellence (NICE)’s Multiple Technology Appraisal (MTA) of biologic drugs for moderate-to-severe UC is underway, following draft guidance issued in September in which it did not recommend Remicade (infliximab) and Simponi (golimumab), both manufactured by MSD, or AbbVie’s Humira (adalimumab), for this use in patients in whom conventional treatments have failed.

A public consultation on this draft guidance conducted by NICE closed October 15, with final guidance expected in January 2015, and CCUK had urged patients to register their views directly with NICE during the consultation. The charity said it was “extremely concerned” at the Institute’s plan not to recommend the use of these products on the NHS, pointing out that they can make “a significant difference” to patients and that restricting access to them would be “a major step backwards in the care and treatment of people with [UC] who could benefit from these therapies.”

The survey points out that current NICE guidance restricts the use of biologic drugs to people who are hospitalised with severe UC, leaving those with moderate-to-severe disease no option other than surgery if they fail conventional therapy. The MTA represents an opportunity to improve access for patients, it adds.

“Although many people with ulcerative colitis will respond well to conventional therapies, there will always be a subset of those who fail to respond to these treatments, and alternative choices to surgery are needed. Biologics could offer a life-transforming opportunity for these patients, who are often young adults, and may even help delay the need for a colectomy,” said Chris Probert, professor of gastroenterology at the University of University of Liverpool.