ArticleJournal of patient-reported outcomes2019
A qualitative study exploring the health-related quality of life and symptomatic experiences of adults and adolescents with ulcerative colitis.
Article in Journal of patient-reported outcomes, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
26 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Disease experiences and perspectives of adolescent patients with inflammatory bowel disease: a meta-synthesis of qualitative research.Frontiers in public health · 2025Pooled it
- International Consensus on Definition of Mild-to-Moderate Ulcerative Colitis Disease Activity in Adult Patients.Medicina (Kaunas, Lithuania) · 2023Pooled it
- Mirikizumab as Induction and Maintenance Therapy in Chinese Patients with Ulcerative Colitis: A Subpopulation Analysis of the Randomized, Global Phase 3 LUCENT-1 and LUCENT-2 Trials.BioDrugs : clinical immunotherapeutics, biopharmaceuticals and gene therapy · 2026Trial
- Bowel urgency in ulcerative colitis: effect of baseline urgency and change in urgency in response to mirikizumab.Journal of patient-reported outcomes · 2025Trial
- End User Needs and Perspectives for a Digital Opioid Safety Tool in Adolescents and Young Adults With Inflammatory Bowel Disease: A Qualitative Human-Centered Design Study.JMIR formative research · 2026Article
- Fecal urgency and incontinence in inflammatory bowel disease perceived by physician and patient: Results from the Swiss fecal urgency survey.United European gastroenterology journal · 2025Article
- Early resolution of bowel urgency by budesonide foam enema results in improved quality of life in patients with ulcerative colitis: a multicenter prospective observational study.Intestinal research · 2025Article
- Addressing the Overlooked Psychological and Social Impact of Fecal Incontinence in IBD Patients-Author's Response.United European gastroenterology journal · 2025Article
- Bowel Urgency in Ulcerative Colitis is Independently Associated with Histologic Inflammation and Stool Form Despite Endoscopic Remission.Journal of inflammation research · 2025Article
- Unmet needs in adult patients with ulcerative colitis in Spain: a real-world Adelphi Disease Specific Programme study.Therapeutic advances in gastroenterology · 2025Article
- Abdominal Pain in Inflammatory Bowel Disease-Epidemiology, Pathophysiology, and Management: A Narrative Review.Pain and therapy · 2024Review
- Patient Perspectives of Bowel Urgency and Bowel Urgency-Related Accidents in Ulcerative Colitis and Crohn's Disease.Inflammatory bowel diseases · 2024Article
- The Clinical Course of Bowel Urgency Severity Among Patients with Inflammatory Bowel Disease-A Real-World Study.Drugs - real world outcomes · 2024Article
- Patient interpretations of patient-reported outcome measures to assess bowel urgency: qualitative interviews in ulcerative colitis.Journal of patient-reported outcomes · 2024Article
- Patient experiences in ulcerative colitis: conceptual model and review of patient-reported outcome measures.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Review
- Insights into disability and psycho-social care of patients with inflammatory bowel disease.Frontiers in medicine · 2024Review
- Association of Bowel Urgency With Quality-of-Life Measures in Patients With Moderately-to-Severely Active Ulcerative Colitis: Results From Phase 3 LUCENT-1 (Induction) and LUCENT-2 (Maintenance) Studies.Crohn's & colitis 360 · 2024Article
- A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments.The Cochrane database of systematic reviews · 2023Review
- Rectal Urgency Among Patients With Ulcerative Colitis or Crohn's Disease: Analyses from a Global Survey.Crohn's & colitis 360 · 2023Article
- Clinical Effect of Mirikizumab Treatment on Bowel Urgency in Patients with Moderately to Severely Active Ulcerative Colitis and the Clinical Relevance of Bowel Urgency Improvement for Disease Remission.Crohn's & colitis 360 · 2023Article
Corrections and comments
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Authors and funding
11 authors.
Funding
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.
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