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HomeUncontrolled UCWhy Patients SettlePrevalence & ImpactDisease NavigatorResources
Why might patients with ulcerative colitis (UC) settle for “OK”? Patients with UC may settle for a lower quality of life after diagnosis, due to low expectations of what remission means for them.
*The UC-CARES study was an observational, multinational, multicentre, retrospective chart review including cross-sectional collection of patient-reported outcomes from patients with UC (N=150) carried out in 11 European countries.2
Patients with UC may not always tell their healthcare professional everything they want to say.

46%

worried that if they asked too many questions, their doctor would see them as a difficult patient, which would affect the quality of care they received†3

49%

of patients often regretted not telling their doctor more during consultations†3

57%

of patients wished they talked more about their fears of medical treatments with their doctor†3

†Result from the UC Narrative global surveys, which examined patient and doctor perspectives on living with UC and tried to identify gaps in optimal care. Questionnaires were conducted across 10 countries. In total, 2,100 patients and 1,254 doctors were surveyed (from August 2017 to February 2018).3
Patients and doctors don't seem to align on which UC symptoms affect a person's life the most.4

Perception of burden of disease:

Doctors ranked diarrhoea (bloody) as the top UC symptom to impact a patient's quality of life, whereas patients most commonly rated rectal urgency as having the greatest impact**††4

‡Patients and doctors were asked to select which 5 symptoms they considered to interfere most with quality of life.4§IBD global assessment of patient and doctor unmet need surveys comprised 2 online surveys: 1 for patients and 1 for doctors. Surveys were fielded in Canada, France, Germany, Italy, Spain, the United Kingdom and the United States. Patient surveys were completed between 22 August 2019 and 10 November 2019 by a total of 2,398 patients with inflammatory bowel disease (IBD) (1,368 with Crohn's disease (CD); 1,030 with UC). Doctor surveys were completed between 16 August 2019 and 10 November 2019 by 654 doctors.4
There is misalignment on treatment goals between patients with UC and their doctors.4

Quality of life related treatment goals:

Doctors ranked increasing the patients ability to work/attend school as the top treatment goal related to quality of life, whereas patients prioritised improved emotional mood**††4

**Among their top 3 quality-of-life-related treatment goals.4 ††IBD global assessment of patient and doctor unmet need surveys comprised 2 online surveys: 1 for patients and 1 for doctors. Surveys were fielded in Canada, France, Germany, Italy, Spain, the United Kingdom and the United States. Patient surveys were completed between 22 August 2019 and 10 November 2019 by a total of 2,398 patients with IBD (1,368 with CD; 1,030 with UC). Doctor surveys were completed between 16 August 2019 and 10 November 2019 by 654 doctors.4

In a survey, 30% of patients with UC rated the impact of UC on their mental wellbeing as an aspect that they wished their doctor had a better understanding of.‡‡5

However, only 23% of doctors reported regularly discussing this topic with their patients‡‡5

‡‡Based on the results of the UC Narrative global patient and doctor surveys; these aimed to identify the impact of UC and to compare and contrast perceptions of UC burden and management approaches. Surveys of patients with UC (self-reported diagnosis; N=2,100) and doctors (N=1,254) were completed across 10 countries between August 2017 and February 2018.5
Discover the prevalence of uncontrolled UC and its impact on patients Prevalence & impact Loading
Uncontrolled UC Identifying the unspoken realities behind uncontrolled UC Learn more Loading
Resources Resources to help look behind “OK” for patients’ UC Learn more Loading
References:Hawthorne BA et al. Aliment Pharmacol Ther 2022;56(4):625-645.Peyrin-Biroulet L et al. Dig Liver Dis 2016;48:601-607.Rubin OT et al. lnflamm Bowel Dis 2021;27:1096-1106.Rubin OT et al. lnflamm Bowel Dis 2021;27:1942-1953.Dubinsky MC et al. lnflamm Bowel Dis 2021;27:1747-1755.

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