Ulcerative colitis: understanding the impact of ulcerative colitis on everyday life and exploring the unmet needs of patients

Background Ulcerative colitis (UC) is a life-long disease characterised by flare ups and periods of remission. This market research sponsored by Janssen-Cilag Ltd was designed to gain an understanding of the impact of UC from the patient's perspective and to establish the main unmet needs associated with it. Methods The market research was conducted by telephone among 30 patients in the UK with a diagnosis of moderate to severe UC. Results Delayed referral from primary care to secondary care was identified as the key unmet need. Hospital appointments were often unavailable for months and in some cases, it was 6 months before a procedure was performed. Specialists rarely involved the patient in discussions regarding diagnosis and initial treatment. Communications improved when treatment changes became necessary but gaps still existed particularly regarding the continued emotional impact of UC. All patients required treatment changes to regain or maintain control and the response to medications varied between patients. Patients who had transitioned through multiple treatments feared they would run out of options and therefore require surgery. The UC journey was highly individualized and patients experienced many emotional ups and downs. Conclusions Healthcare bodies should aim to improve earlier referral to secondary care and waiting times for investigation need to be reduced significantly. Patients felt that specialists could support them in understanding their condition by discussing it with them immediately following diagnosis and by involving them in the development of their individual treatment plans. There is a need for more effective and better tolerated medications to expand the armamentarium and thus reduce the need for surgery.

Automated summary

This market research identified early referral to secondary care and reducing waiting times for investigation as key factors in improving the quality of life for patients with ulcerative colitis (UC). Patients expressed a desire for specialists to discuss their condition with them immediately following diagnosis and involve them in the development of their individual treatment plans.