ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2008
Beyond standard quality of life measures: the subjective experiences of living with inflammatory bowel disease.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2008. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis that pooled it.
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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.
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Who cites it
24 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Systematic Literature Review: Ability of the IBDQ-32 to Detect Meaningful Change in Ulcerative Colitis Health Indicators.Inflammatory bowel diseases · 2024Pooled it
- Induction and Maintenance Treatment With Upadacitinib Improves Health-Related Quality of Life in Patients With Moderately to Severely Active Ulcerative Colitis: Phase 3 Study Results.Inflammatory bowel diseases · 2023Trial
- Tofacitinib in Patients with Ulcerative Colitis: Inflammatory Bowel Disease Questionnaire Items in Phase 3 Randomized Controlled Induction Studies.Inflammatory bowel diseases · 2021Trial
- Tofacitinib in Patients with Ulcerative Colitis: Health-Related Quality of Life in Phase 3 Randomised Controlled Induction and Maintenance Studies.Journal of Crohn's & colitis · 2018Trial
- Assessing health status in inflammatory bowel disease using a novel single-item numeric rating scale.Digestive diseases and sciences · 2013Trial
- Article
- eLIFEwithIBD: study protocol for a randomized controlled trial of an online acceptance and commitment therapy and compassion-based intervention in inflammatory bowel disease.Frontiers in psychology · 2024Article
- A Continuous Registry of Medical Record, Patient Input, and Epidemiological Data of Patients With Ulcerative Colitis: a Multicentre, Prospective, Observational Clinical Registry Study in Japan.Annals of clinical epidemiology · 2024Article
- «Digesting Crohn's Disease»: The Journey of Young Adults since Diagnosis.Journal of clinical medicine · 2023Article
- Understanding Perceived Stress in Adolescent Inflammatory Bowel Disease.Journal of the Canadian Association of Gastroenterology · 2022Article
- Understanding Gut Feelings: Transformations in Coping With Inflammatory Bowel Disease Among Young Adults.Qualitative health research · 2021Article
- The LIFEwithIBD Intervention: Study Protocol for a Randomized Controlled Trial of a Face-to-Face Acceptance and Commitment Therapy and Compassion-Based Intervention Tailored to People With Inflammatory Bowel Disease.Frontiers in psychiatry · 2021Article
- Systematic review: the impact of inflammatory bowel disease-related fatigue on health-related quality of life.Frontline gastroenterology · 2021Article
- The Inflammatory Bowel Disease Questionnaire in Randomized Controlled Trials of Treatment for Ulcerative Colitis: Systematic Review and Meta-Analysis.Journal of patient-centered research and reviews · 2020Review
- Psychometric validation of the work productivity and activity impairment questionnaire in ulcerative colitis: results from a systematic literature review.Journal of patient-reported outcomes · 2018Review
- Changes in health-related quality of life and work-related outcomes for patients with mild-to-moderate ulcerative colitis receiving short-term and long-term treatment with multimatrix mesalamine: a prospective, open-label study.Journal of patient-reported outcomes · 2018Article
- Assessment of disease specific knowledge and health-related quality of life among United States military veterans with inflammatory bowel disease.World journal of gastroenterology · 2015Article
- "A gift wrapped in barbed wire" positive and negative life changes after being diagnosed with inflammatory bowel disease.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2015Article
- Fatigue interference with daily living among patients with inflammatory bowel disease.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2014Article
- The burden of inflammatory bowel disease: a patient-reported qualitative analysis and development of a conceptual model.Inflammatory bowel diseases · 2014Article
Corrections and comments
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionIn order to facilitate our understanding of health-related quality of life (HRQoL) for inflammatory bowel disease (IBD) patients, it is critical to explore their subjective experiences with the disease. Research has suggested that current modes of assessing HRQoL (i.e., generic and disease-specific measures) may not fully represent all dimensions of patients' HRQoL. The purpose of this study was to examine IBD patients' subjective experiences of the daily impact of IBD, and categorize dimensions of their HRQoL affected by IBD, as identified by the patients themselves.
methodsTwo hundred and eighty-two patients with IBD provided answers to the qualitative question "How has IBD affected your daily activities?" A content analysis using NVivo 2.0 was conducted on the participants' responses to this question to reveal dimensions of their HRQoL.
resultsThe analysis yielded six dimensions and several subdimensions of HRQoL, including physical (systemic functioning, daily functioning, energy/vitality, pain), emotional, social, cognitive (functioning, attending to disease), self-regulation (taking control, loss of control, and neutral), and practical functioning. DISCUSSION: These results reflect previous findings, but also reveal several dimensions of HRQoL not included in current measures of HRQoL for IBD patients (i.e., cognitive, self-regulation, and practical). The implications of these findings for future measurement of HRQoL and research with IBD patients are discussed.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.