Introduction The qualitative element of CONSTRUCT, a randomised controlled trial comparing clinical and cost effectiveness of infliximab and ciclosporin in steroid resistant UC, contributed to the specific trial objectives of examining quality of life (QoL) across the two groups. The qualitative element concentrated on patient and professional perceptions, and we describe patients’ opinions about treatments and other UC therapies.
Methods Semi-structured telephone interviews with patients three and 12 months after admission with acute severe UC and randomisation. Thematic analysis was conducted by three qualitative researchers, followed by group analysis by seven members of CONSTRUCT. This abstract concentrates on the three month data.
Results 20 interviews were completed. Length of disease duration varied but similar stories emerged about living and coping with UC, the physical, mental and emotional impact of the disease, treatment options and concerns and hopes for the future. The main issues were:
Patients favour infliximab because they perceive a more positive treatment outcome, easier treatment regime and fewer side effects
The dramatically debilitating symptoms that impact on patients’ QoL, their family and friends, are particularly noticeable in this disease
Patients live with the ongoing unpredictability of symptoms and treatment, making it particularly difficult for patients and healthcare professionals to manage care
Unlike other chronic diseases, UC is considered embarrassing, making it an isolating and awkward experience for patients and difficult to manage work and life routines
The lack of visibility of symptoms or outcomes impacts on patients’ ability to share and discuss openly with others
Surgery is feared but most patients experience relief and subsequent recognition of health benefits following surgery
Patients would like to understand what causes UC, its links to stressors and diet and would welcome more extensive information provision
Ready access to IBD Nurses was considered important.
Conclusion Study findings indicate that UC patients live with constant, unpredictable symptoms, where a flare-up becomes socially isolating along with anxieties of deteriorating health. Patients need support to manage the impact of UC on their lives, consider prompt diagnosis to be important, and need relevant treatment provided quickly. Patients clearly prefer infliximab because of the easier treatment regime and fewer side effects. The views of patients after surgery were generally positive, but more research is required into surgical treatment of UC to support those facing surgery and as an alternative to medical treatment. The profile of UC should be raised to destigmatise the disease and thus the embarrassment felt by sufferers and those living with the outcomes of surgery.
Disclosure of Interest None Declared.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.