The emotional impact of diagnosis on patients with ulcerative colitis in the UK

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Background: The diagnosis period can mark a turning point in life for patients diagnosed with chronic conditions. Being diagnosed with ulcerative colitis (UC) can be a stressful and disruptive time for patients, not only because of the effects of symptoms and disease activity, but also because of the need to understand and adapt to the implications of diagnosis more broadly. Very little qualitative research focussing on patients’ experience of diagnosis with UC has been conducted to date. Such research might help us understand these processes more fully.

The aim of this presentation is to explore qualitative research data collected from patients resident in the UK describing their perspectives on the period immediately pre and post diagnosis with UC.

Methods: In-depth semi-structured interviews were carried out with 40 UC patients as part of qualitative studies integrated with two separate pilot trials. Patients who withdrew from the trials, or who declined to take part, were also interviewed.

Results: The majority of patients had no awareness or knowledge of UC before being diagnosed with the condition. This contributed to patients being anxious about how the disease would advance and what to expect in the future. Prior to diagnosis, some primary care physicians dismissed patients’ reported symptoms, thereby increasing the length of time it took to be referred to a gastroenterologist and adding to their distress. Finally, patients reported feeling a range of emotions after being diagnosed with UC, including shock, relief, and confusion about whom to turn to for help. They also expressed a lack of emotional support during this particularly upsetting and difficult time.

Conclusions: The diagnosis period is a very emotional time for patients who suffer from UC. In addition to feeling distressed before being diagnosed and anxious about their future, patients also felt isolated and lacked emotional support after their diagnosis. Some emotional support is currently available from various sources throughout the diagnosis period, including health services (IBD nurse, hotline), charities (peer support groups, hotline), and families and friends. However, these support initiatives do not seem to meet all the patients’ requirements. Having an early multi-disciplinary assessment as soon as possible after diagnosis could be vital to minimise the psychological impact of the diagnosis. Future research should concentrate on how patients’ needs could be met more efficiently to improve patients’ experience of being diagnosed with UC. In turn, this may help patients adapt more effectively and rapidly to their diagnosis.
Original languageEnglish
Pages (from-to)S236-S236
Number of pages1
JournalJournal of Crohn's & Colitis
Issue numberS1
Early online date25 Jan 2019
Publication statusPublished - Mar 2019
Event14th Congress of ECCO - Copenhagen, Denmark
Duration: 6 Mar 20199 Mar 2019

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