Symptoms such as Faecal Incontinence and urgency on inflammatory bowel disease (IBD) significantly affect patients and can persist even on clinical remission. In order to offer support, it is essential to understand the effects of FI on domains of life. However, there is little research on the impact of FI/urgency due to IBD in adults in Latin America, where professionals do not have as much access to knowledge about IBD. This study addresses this knowledge gap.

Using exploratory qualitative methods, we conducted an online focus group with 14 people with IBD recruited from the Brazilian Crohn's and Colitis organisation; data were collected using a digital audio recorder and transcribed and anonymized. We used thematic analysis for focus group data.

Of the 232 individuals who received the invitation, 55 expressed interest in participating. Of these, 14 met the eligibility criteria, completed an online semi-structured questionnaire that collected sociodemographic and clinical characteristics, and were included in the three focus groups (N = 4, 5, 5). The participants, who included 12 females, were aged between 24 and 60 years, with a mean age of 40.85 (SD = 10.09). The participants were diagnosed with Crohn's disease (n = 8), Ulcerative Colitis (n = 5), and unclassified IBD (n = 1). Disease duration ranged from 2 to 38 years, with a mean duration of 13.8 years. Most participants were Brown Brazilians (pardos) (n = 8). Six participants had a high school level of education, and six had a bachelor’s degree. Nine participants were living with a partner. The mean Wexner Score (23) was 12.38. Among the participants, 71% (n = 10) showed moderate incontinence, 21% (n = 3) severe incontinence, and 7% (n = 1) mild incontinence. In addition, the participants reported experiencing urgency, with mean impact scores on the VAS ranging from 0 to 10: 6.38 for daily life, 4.93 for relationships, 6.92 for social life, and 7.54 for professional activities. Nine participants indicated they had received professional guidance about urgency and FI. The data revealed three main themes: (1) 'Professional support'; (2) 'Impact of urgency/FI on daily life, physical and emotional health'; (3) 'Self-management strategies'.

The lack of information from health professionals, added to the combined influence of factors such as diet and stress, worsens the symptoms of FI/urgency. As a result, patients expressed the need to create strategies independently and for information and support from healthcare professionals to improve self-management.

The urgency of IBD affects the physical, emotional and psychosocial health of patients and is intensified by the lack of information from professionals that leads to adaptive coping strategies. Healthcare professionals need to learn about IBD and its symptoms, especially IF/urgency management, to minimise the impact of these symptoms on patients' lives; online IF/urgency management tools can help in this process.

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Fawson S, Dibley L, Smith K, et al. Developing an online program for self-management of fatigue, pain, and urgency in inflammatory bowel disease: patients’ needs and wants. Dig Dis Sci. 2022;67:2813-26. doi: 10.1007/s10620-021-07109-9.
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