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The Inflammatory Bowel Disease Symptom Inventory: A Patient-report Scale for Research and Clinical Application.

ABSTRACT: OBJECTIVES:Existing measures of inflammatory bowel disease (IBD) symptoms are not well suited to self-report, inadequate in measurement properties, insufficiently specific, or burdensome for brief or repeated administration. We aimed to develop a patient-reported outcome measure to assess a broader range of IBD symptoms. METHODS:The IBD Symptoms Inventory (IBDSI) was developed by adapting symptom items from existing clinician-rated or diary-format inventories; after factor analysis, 38 items were retained on 5 subscales: bowel symptoms, abdominal discomfort, fatigue, bowel complications, and systemic complications. Participants completed the IBDSI and other self-report measures during a clinic visit. A nurse administered the Harvey Bradshaw Index (HBI) for Crohn's disease (CD) or the Powell-Tuck Index (PTI) for ulcerative colitis (UC), and a gastroenterologist completed a global assessment of disease severity (PGA). RESULTS:The 267 participants with CD (n = 142) or UC (n = 125), ages 18 to 81 (M = 43.4, SD = 14.6) were 58.1% female, with a mean disease duration of 13.9 (SD = 10.5) years. Confirmatory factor analysis supported the 5 subscales. The total scale and subscales showed good reliability and significant correlations with self-report symptom and IBD quality of life measures, the HBI, PTI, and PGA. CONCLUSIONS:The IBDSI showed strong measurement properties: a supported factor structure, very good internal consistency, convergent validity, and excellent sensitivity and specificity to clinician-rated active disease. Self-report HBI and PTI items, when extracted from this measure, produced scores comparable to clinician-administered versions. The 38-item IBDSI, or 26-item short form, can be used as a brief survey of common IBD symptoms in clinic or research settings.

SUBMITTER: Sexton KA

PROVIDER: S-EPMC6635838 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:ObjectivesThis systematic review aims to investigate what is currently known about the characteristics of interactions between patients with inflammatory bowel disease (IBD) and their clinicians and its effect on patient outcomes.Data sourcesScopus, PubMed, Embase, Communication Abstracts, Health & Society, Linguistics and Language Behaviour Abstracts and PsycINFO were systematically searched from inception to June 2021.Study eligibility criteriaPeer-reviewed journal articles and book chapters in English investigating the characteristics of naturally occurring interactions between clinicians that manage IBD and patients with IBD during recorded consultations were included.Study appraisal and synthesis methodsRisk of bias was assessed using a specifically developed quality assessment tool, grounded in linguistic theory and the Mixed Methods Appraisal Tool. A narrative synthesis guided by the linguistic concept of metafunction was performed to synthesise the findings.ResultsOf the 2883 abstracts reviewed five formed the basis of the review. Interactions between IBD nurses and patients have been mostly characterised in terms of information provision regarding prescribed medications without consideration of the interpersonal aspect. Discussing online medical information with nurses has been shown to improve patient satisfaction. Analyses of gastroenterologist-patient interactions have concentrated on the clinical relationship which has been shown to be disease-centred. Shared decision making in ulcerative colitis has been shown to be compromised due to lack of transparency regarding treatment goals.LimitationsThis review did not include articles in languages other than English. Cumulative evidence could not be produced due to the small number of included studies and the diversity of contexts, theories and data types.Conclusions and implications of key findingsThere is a paucity of systematic research on naturally occurring clinical communication in IBD and its effect on outcomes. Further research needs to be done to address this knowledge gap.Prospero registration numberCRD42020169657.

Project description:BackgroundHermansky-Pudlak syndrome (HPS) is a rare, genetically heterogeneous disorder that manifests oculocutaneous albinism together with bleeding diatheses that reflect a platelet storage pool deficiency. Ten genetic subtypes of this autosomal recessive condition have been described to date. Some patients with Hermansky-Pudlak syndrome type 1, 4, or 6 develop Crohn's-like inflammatory bowel disease at any age including early childhood, but most often in adolescence or young adulthood. Here we report infantile-onset of inflammatory bowel disease in a patient with Hermansky-Pudlak syndrome type 1 who responded to infliximab.Case presentationA Japanese boy, the second child of non-consanguineous healthy parents, was born with chalky white skin, silvery-white hair, and gray eyes, representing oculocutaneous albinism. He developed frequent diarrhea and fever accompanied by weight loss at 6 months, and was diagnosed with Crohn's-like inflammatory bowel disease based on the endoscopic finding of longitudinal ulcerations in the colon and the histopathologic finding of nonspecific chronic inflammation without granulomas at the age of 11 months. Treatment with an elemental diet, salazosulfapyridine, and corticosteroids failed to improve clinical or laboratory abnormalities, and the diarrhea became bloody. At 13 months he began treatment with infliximab, which produced marked improvement followed by clinical remission. Endoscopy at 20 months demonstrated healing of the colonic mucosa. At 22 months he is in sustained clinical remission receiving only infliximab. Because albinism with inflammatory bowel disease suggested Hermansky-Pudlak syndrome, we performed genetic screening using next-generation sequencing in a targeted gene panel analysis for primary immunodeficiency disease and/or inflammatory bowel disease. The patient proved to have a compound heterozygous mutation of the HPS1 gene resulting in Hermansky-Pudlak syndrome type 1.ConclusionsWe consider this report to be the first account of type 1 Hermansky-Pudlak syndrome with infantile-onset of inflammatory bowel disease. Early administration of infliximab was effective. We recommend next-generation sequencing for patients with very early-onset inflammatory bowel disease suspected to be monogenic.

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The Inflammatory Bowel Disease Symptom Inventory: A Patient-report Scale for Research and Clinical Application.

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