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Abstract
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.
Transparency
Declaration of funding
The study was conducted by Branding Science UK on behalf of the sponsoring company Janssen-Cilag Ltd. The recruitment screener and discussion guide were developed by Branding Science UK in conjunction with Janssen-Cilag Ltd whose medical department approved the final versions for medical accuracy and appropriateness. Branding Science UK also executed the content analysis.
Declaration of financial/other relationships
PO’H is an independent consultant and will be the primary author on the project. He was remunerated by Branding Science UK for the medical writing services only. AA and JL did not receive any remuneration for their part in the preparation of the manuscript. DK is an employee of Janssen UK and ST is the co-founder of the patient association IBDrelief and is part of the Janssen-Cilag Ltd patient advisory committee but neither received specific remuneration for their part in the preparation of this manuscript. LS is a part of Janssen Patient Access Committee and was remunerated for her input as an external advisor. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.
Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.
Author contributions
PO’H interpreted the data provided by Branding Science UK and prepared all drafts including the final version and will be the primary author. JL, AA, DK and ST reviewed the research and report drafts, made revisions where necessary and approved the final version.
Acknowledgements
Authors would like to thank Laura Stuart, a UC patient, for reviewing the research and reflecting on the outcomes from her personal experience. We would also like to thank Andrew Cavill and Emilie Genero of Branding Science UK for their work in the design of the study, the preparation of the screener and discussion guide and for providing the content analysis on which this manuscript is based.