Alyse Bedell

Development of the Northwestern Esophageal Quality of Life Scale: A Hybrid Measure for Use Across Esophageal Conditions.

OBJECTIVES:Measures of health-related quality of life (HRQOL) in chronic esophageal conditions such as gastroesophageal reflux disease, eosinophilic esophagitis, and achalasia are widely used to measure this important patient-reported outcome. We seek to leverage these existing measures to create a hybrid measure of esophageal illness HRQOL (the Northwestern Esophageal Quality of Life—NEQOL), allowing for broad use across diseases while maintaining sensitivity to nuances of a specific condition.METHODS:A three-step, mixed-methods process per FDA guidelines for patient-reported outcome (PRO) development was followed: review and consolidation of existing HRQOL measure items into a single questionnaire, reliability and validity analyses (principle components factor analysis, Cronbach alpha, Guttman split-half, inter-item correlation, test–retest correlation, and Pearson’s correlation with related constructs) based on responses from a representative sample of esophageal illness patients, and individual structured cognitive interviews with patients for item refinement and reduction.RESULTS:An initial 30-item measure was created. Two-hundred twelve patients completed the reliability and validity portion of the study, and 15 completed cognitive interviews. Factor analysis and item-reduction resulted in 11 items being removed from the NEQOL prior to patient interviews. Construct validity was supported by moderate and significant correlations with psychological distress and general HRQOL. Test–retest reliability was excellent. Following patient interviews, an additional 5 items were removed because of floor effects or participant feedback yielding a 14-item, single scale measure of HRQOL.CONCLUSIONS:Although more research is warranted, the NEQOL is a reliable and a valid hybrid measure of disease-specific HRQOL across several chronic esophageal conditions.

Psychosocial impact of irritable bowel syndrome: A brief review

Irritable bowel syndrome (IBS) is a common disorder of the gastrointestinal tract with unclear etiology and no reliable biomarker. Like other chronic and functional disorders, medical treatments for IBS are suboptimal and the overall illness burden is high. Patients with IBS report high rates of psychopathology, low quality of life, and increased suicidal ideation. These patients also miss more days of work, are less productive at work, and use many healthcare resources. However, little is known about the burden of IBS on daily functioning. The primary aim of this paper is to review the current literature on the burden of IBS and to highlight the need for further research to evaluate the impact of IBS on daily activities. This research would contribute to our existing understanding of the impact of IBS on overall quality of life and well-being.

Stigmatization toward irritable bowel syndrome and inflammatory bowel disease in an online cohort.

Stigma is associated with many negative health outcomes. Research has examined perceived and internalized stigma in individuals with irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD), but less has been done to evaluate levels of enacted stigma associated with these conditions. The aim of this study was to evaluate the presence of enacted stigma toward IBS and IBD in the general population compared to an adult‐onset asthma (AOA) control group.

Psychological Considerations and Interventions in Inflammatory Bowel Disease Patient Care

The presence of psychological comorbidities, specifically anxiety and depression, is well documented in inflammatory bowel disease (IBD). The drivers of these conditions typically reflect 4 areas of concern: disease impact, treatment concerns, intimacy, and stigma. Various demographic and disease characteristics increase risk for psychological distress. However, the risk for anxiety and depression is consistent throughout IBD course and is independent of disease activity. Early intervention before psychological distress becomes uncontrolled is ideal, but mental health often is unaddressed during patient visits. Understanding available psychological treatments and establishing referral resources is an important part of the evolution of IBD patient care.

Impact on Health-Related Quality of Life in Adults with Eosinophilic Gastritis and Gastroenteritis: A Qualitative Assessment

BackgroundEosinophilic gastritis (EG) and eosinophilic gastroenteritis (EGE) are chronic immune-mediated conditions of the digestive tract, which affect the stomach only, or the stomach and small intestines, respectively. Though these disorders are uncommon, they are being increasingly recognized and diagnosed. While health-related quality of life (HRQOL) has been evaluated in other eosinophilic gastrointestinal diseases, this study is the first to describe HRQOL impacts unique to EG/EGE.AimsThis study aims to qualitatively describe experiences of adults diagnosed with EG and EGE. We aim to identify impacts on HRQOL in this population in order to inform clinical care and assessment.MethodsSeven patients diagnosed with EG or EGE participated in semi-structured interviews assessing common domains of HRQOL.ResultsFour distinct themes emerged from qualitative analyses, which represent impacts to HRQOL: the psychological impact of the diagnosis, impact on social relationships, financial impact, and impact on the body. These generally improved over time and with effective treatment.ConclusionsThis study demonstrated that patients with EG/EGE experience impacts to HRQOL, some of which differ from HRQOL of other eosinophilic gastrointestinal diseases. These results support the development of a disease-specific measure, or adaptation of an existing measure, to assess HRQOL in EG/EGE.