Abstract
BackgroundUlcerative colitis (UC) often first presents during adolescence and early adulthood. Primary symptoms of UC are well known, yet similarities and differences of disease experience in adults and adolescents are not well characterized.MethodsTo understand the health-related quality of life (HRQoL) and symptomatic experience of UC, in-depth interviews were conducted in the US with 21 adults (20–70 years) and 14 adolescents (12–17 years). Eligibility and medical history were confirmed by clinician report. A previously conducted literature review and resultant conceptual model informed the discussion guide to explore symptoms and HRQoL. Age appropriate creative tasks (“animal” task and collage) were employed to facilitate discussion. Transcripts and collages were subjected to thematic analysis using ATLAS.ti software.ResultsClinician-reported UC severity included 24% mild, 38% moderate, 38% severe among adults; and 64% mild, 29% moderate, 7% severe among adolescents. Among adults, 52% were female, 67% were white. Among adolescents, 50% were female, 71% were white. During analysis it was noted that all participants reported stomach/abdominal pain. Other key symptoms identified were frequent bowel movements, diarrhea, blood in stools, sudden need for bowel movement, stomach cramping, bloating, and feeling gassy/passing gas (≥75% of participants). Key impacts identified were embarrassment, dietary limitations, having to plan around UC, worry/fear, anger, low mood/depression, and relationship with others, (≥75% of participants). In creative tasks, animals were chosen to represent their UC and content included in the collages reflected the most commonly discussed themes from the interviews. Only adults discussed feeling dehydrated, while only adolescents discussed the impact of UC on school life.ConclusionsOpen-ended interviews highlighted the HRQoL and symptomatic experiences of UC from the patient’s perspective, which were similar between adult and adolescent UC patients.
Highlights
IntroductionPrimary symptoms of Ulcerative colitis (UC) are well known, yet similarities and differences of disease experience in adults and adolescents are not well characterized
Ulcerative colitis (UC) often first presents during adolescence and early adulthood
Qualitative analysis of the interviews confirmed a substantial burden of UC on both adults and adolescents and identified several symptoms experienced in this population
Summary
Primary symptoms of UC are well known, yet similarities and differences of disease experience in adults and adolescents are not well characterized. Ulcerative colitis (UC) is a chronic gastrointestinal disease, which often presents in adolescence and early adulthood, and is characterized by inflammation in the colon [1]. Patients diagnosed with UC in childhood typically have more extensive disease, with more frequent, acute, and severe exacerbations when compared to those diagnosed as adults [2, 3]. Regardless of age, those with UC report intermittent disease flares interspersed with periods of remission, with approximately 20–30% requiring colectomy within 10 years of diagnosis [1]
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