Internalized Stigma in Patients with Eosinophilic Gastrointestinal Disorders.

The aim of the current study is to evaluate internalized stigma in individuals diagnosed with an eosinophilic gastrointestinal disorder (EGID) and its impact on psychosocial and health-related outcomes. The final study sample consisted of 149 patients with a self-reported EGID diagnosis for at least 6 months. Participants completed measures evaluating internalized stigma, disease-specific quality of life, emotional distress (anxiety, depression) and answered questions regarding healthcare utilization. Overall, increased internalized stigma was associated with decreased disease-specific quality of life, and increased anxiety and depression. In addition, participants with greater overall internalized stigma felt that treatments were less effective, and the internalized stigma subscales of alienation and discrimination were associated with increased outpatient visits and endoscopies, respectively. Providers working with EGID patients should assess for signs of internalized stigma, such as social withdrawal and alienation. Psychogastroenterology services that deliver evidence-based psychological interventions may reduce some of the negative impacts of internalized stigma.

Validation of the oesophageal hypervigilance and anxiety scale for chronic oesophageal disease.

BACKGROUND: Oesophageal hypervigilance and anxiety can drive symptom experience in chronic oesophageal conditions, including gastro-oesophageal reflux disease, achalasia and functional oesophageal disorders. To date, no validated self-report measure exists to evaluate oesophageal hypervigilance and anxiety. AIMS: This study aims to develop a brief and reliable questionnaire assessing these constructs, the oesophageal hypervigilance and anxiety scale (EHAS). METHODS: Questions for the EHAS were drawn from 4 existing validated measures that assessed hypervigilance and anxiety adapted for the oesophagus. Patients who previously underwent high-resolution manometry testing at a university-based oesophageal motility clinic were retrospectively identified. Patients were included in the analysis if they completed the EHAS as well as questionnaires assessing symptom severity and health-related quality of life at the time of the high-resolution manometry. RESULTS: Nine hundred and eighty-two patients aged 18-85 completed the study. The EHAS demonstrates excellent internal consistency (α = 0.93) and split-half reliability (Guttman = 0.87). Inter-item correlations indicated multicollinearity was not achieved; thus, no items were removed from the original 15-item scale. Principal components factor analysis revealed two subscales measuring symptom-specific anxiety and symptom-specific hypervigilance. Construct validity for total and subscale scores was supported by positive correlations with symptom severity and negative correlations with health-related quality of life. CONCLUSIONS: The EHAS is a 15-item scale assessing oesophageal hypervigilance and symptom-specfic anxiety. The EHAS could be useful in evaluating the role of these constructs in several oesophageal conditions in which hypersensitivity, hypervigilance and anxiety may contribute to symptoms and impact treatment outcomes.

Systematic review: methodological flaws in racial/ethnic reporting for gastroesophageal reflux disease.

Health care disparities affecting the care of multiple disease groups are of growing concern internationally. Research guidelines, governmental institutions, and scientific journals have attempted to minimize disparities through policies regarding the collection and reporting of racial/ethnic data. One area where shortcomings remain is in gastroesophageal reflux disease (GERD). This systematic review, which adheres to the PRISMA statement, focuses on characterizing existing methodological weaknesses in research focusing on studies regarding the assessment, prevalence, treatment, and outcomes of GERD patients. Search terms included GERD and typical symptoms of GERD in ethnic groups or minorities. We reviewed 62 articles. The majority of studies did not report the race/ethnicity of all participants, and among those who did, very few followed accepted guidelines. While there were diverse participants, there was also diversity in the manner in which groups were labeled, making comparisons difficult. There appeared to be a disparity with respect to countries reporting race/ethnicity, with certain countries more likely to report this variable. Samples overwhelmingly consisted of the study country's majority population. The majority of studies justified the use of race/ethnicity as a study variable and investigated conceptually related factors such as socioeconomic status and environment. Yet, many studies wrote as if race/ethnicity reflected biological differences. Despite recommendations, it appears that GERD researchers around the world struggle with the appropriate and standard way to include, collect, report, and discuss race/ethnicity. Recommendations on ways to address these issues are included with the goal of preventing and identifying health care disparities.

Evaluating the reliability and construct validity of the Eckardt symptom score as a measure of achalasia severity.

BACKGROUND: Achalasia is a disease of mechanical esophageal dysfunction characterized by dysphagia, chest pain, regurgitation, and malnutrition. The Eckardt symptom score (ESS) is the gold standard self-report assessment tool. Current guidelines outline a three-step approach to patient reported outcomes measure design. Developed prior to these policies, the ESS has not undergone rigorous testing of its reliability and validity. METHODS: Adult achalasia patients retrospectively identified via a patient registry were grouped based on treatment history. Patients were grouped PREPOST (completed ESS, GERDQ, brief esophageal dysphagia questionnaire, NIH PROMIS Global Health, high resolution manometry, timed barium esophagram prior to treatment and after) and POST (completed measures only after treatment). Clinical characteristics, treatment type and date were obtained via medical record. Standardized psychometric analyses for reliability and construct validity were performed. KEY RESULTS: 107 patients identified; 83 POST and 24 PREPOST. The ESS has fair internal consistency and split-half reliability with a single factor structure. Dysphagia accounts for half the variance in ESS, while chest pain and weight loss account for 10% each. Pre-post-surgical assessment demonstrates improvements in ESS, except for weight loss. Effect sizes range from 0.24 to 2.53, with greatest change in regurgitation. Validity of the ESS is supported by modest correlations with GERDQ, HRQOL, and physiological data. CONCLUSIONS & INFERENCES: The ESS demonstrates fair reliability and validity, with a single factor structure mostly explained by dysphagia. Based on psychometric findings, weight loss and chest pain items may be decreasing ESS reliability and validity. Further assessment of the ESS under FDA guidelines is warranted.

Stigma perceptions in patients with eosinophilic gastrointestinal disorders.

This study aims to evaluate the presence of perceived stigma in people diagnosed (self-reported) with an eosinophilic gastrointestinal disorder and examine the relationship to the patient's health-related quality of life and additional psychosocial patient-reported outcomes. One hundred forty-nine patients diagnosed for a minimum of 6 months participated in the study. Eligible participants completed questionnaires to assess perceived stigma, psychological functioning, and health-related quality of life. Perceived stigma was moderately associated with a decrease in total health-related quality of life and perceived treatment efficacy. Additionally, greater perceived stigma was positively correlated with an increase in anxiety, depression, and healthcare utilization. The study demonstrates the influence of perceived stigma on several aspects of health-related quality of life in patients with these illnesses. As such, it is important for health professionals to be aware of stigma in patients diagnosed with an eosinophilic gastrointestinal disorder.

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

BACKGROUND: 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. METHODS: Participants were recruited via social media and a research-dedicated website and completed all measures online. Participants were randomized to one of six clinical vignettes: (i) IBD male, (ii) IBD female, (iii) IBS male, (iv) IBS female, (v) AOA male, or (vi) AOA female. Participants read the assigned vignette and then completed measures of emotional empathy, level of familiarity, and enacted stigma. KEY RESULTS: Participants reported higher levels of enacted stigma toward IBS compared to both IBD and AOA. No differences in stigma were found between IBD and AOA. Higher levels of familiarity were most strongly correlated with reduced IBD-related stigma, with weaker but still significant correlations between level of familiarity and IBS and AOA. Higher levels of emotional empathy were associated with reduced stigma for IBD, IBS, and AOA. CONCLUSIONS & INFERENCES: Individuals with IBS experience greater levels of enacted stigma compared to IBD and AOA. This finding is consistent with previous research that has shown greater levels of perceived and internalized stigma in IBS compared to IBD.

Development and validation of the brief esophageal dysphagia questionnaire.

BACKGROUND: Esophageal dysphagia is common in gastroenterology practice and has multiple etiologies. A complication for some patients with dysphagia is food impaction. A valid and reliable questionnaire to rapidly evaluate esophageal dysphagia and impaction symptoms can aid the gastroenterologist in gathering information to inform treatment approach and further evaluation, including endoscopy. METHODS: 1638 patients participated over two study phases. 744 participants completed the Brief Esophageal Dysphagia Questionnaire (BEDQ) for phase 1; 869 completed the BEDQ, Visceral Sensitivity Index, Gastroesophageal Reflux Disease Questionnaire, and Hospital Anxiety and Depression Scale for phase 2. Demographic and clinical data were obtained via the electronic medical record. The BEDQ was evaluated for internal consistency, split-half reliability, ceiling and floor effects, and construct validity. KEY RESULTS: The BEDQ demonstrated excellent internal consistency, reliability, and construct validity. The symptom frequency and severity scales scored above the standard acceptable cutoffs for reliability while the impaction subscale yielded poor internal consistency and split-half reliability; thus the impaction items were deemed qualifiers only and removed from the total score. No significant ceiling or floor effects were found with the exception of 1 item, and inter-item correlations fell within accepted ranges. Construct validity was supported by moderate yet significant correlations with other measures. The predictive ability of the BEDQ was small but significant. CONCLUSIONS & INFERENCES: The BEDQ represents a rapid, reliable, and valid assessment tool for esophageal dysphagia with food impaction for clinical practice that differentiates between patients with major motor dysfunction and mechanical obstruction.

Eosinophilic oesophagitis: relationship of quality of life with clinical, endoscopic and histological activity.

BACKGROUND: Knowledge about determinants of quality of life (QoL) in eosinophilic oesophagitis (EoO) patients helps to identify patients at risk of experiencing poor QoL and to tailor therapeutic interventions accordingly. AIM: To evaluate the impact of symptom severity, endoscopic and histological activity on EoE-specific QoL in adult EoE patients. METHODS: Ninety-eight adult EoE patients were prospectively included (64% male, median age 39 years). Patients completed two validated instruments to assess EoE-specific QoL (EoO-QoL-A) and symptom severity (adult EoE activity index patient-reported outcome) and then underwent esophagogastroduodenoscopy with biopsy sampling. Physicians reported standardised information on EoE-associated endoscopic and histological alterations. The Spearman's rank correlation coefficient was calculated to determine the relationship between QoL and symptom severity. Linear regression and analysis of variance was used to quantify the extent to which variations in severity of EoE symptoms, endoscopic and histological findings explain variations in QoL. RESULTS: Quality of life strongly correlated with symptom severity (r = 0.610, P < 0.001). While the variation in severity of symptoms, endoscopic and histological findings alone explained 38%, 35% and 22% of the variability in EoE-related QoL, respectively, these together explained 60% of variation. Symptom severity explained 18-35% of the variation in each of the five QoL subscale scores. CONCLUSIONS: Eosinophilic oesophagitis symptom severity and biological disease activity determine QoL in adult patients with eosinophilic oesophagitis. Therefore, reduction in both eosinophilic oesophagitis symptoms as well as biological disease activity is essential for improvement of QoL in adult patients. Clinicaltrials.gov number, NCT00939263.

Moving beyond perceptions: internalized stigma in the irritable bowel syndrome.

BACKGROUND: Internalized stigma (IS) is an important construct in the chronic illness literature with implications for several patient reported outcomes. To date, no study exists evaluating IS in patients with the irritable bowel syndrome (IBS). METHODS: Two hundred and forty three online and clinical participants completed the following questionnaires: the IS scale for mental illness (ISMI; modified for IBS), perceived stigma scale for IBS, NIH-PROMIS Anxiety and Depression Scales, IBS quality of life scale, and the Perceived Health Competence Scale. Demographical and clinical data were also collected. KEY RESULTS: The modified ISMI was reliable and valid in this population. Participants reported both perceived and IS. Alienation was most reported, followed by social withdrawal and discrimination experiences. IS predicted 25-40% of the variance in psychological functioning, quality of life, healthcare utilization, and health competence when controlling for stigma perception and disease variables. IBS patients perceived more stigma from personal relations than healthcare providers. Hispanic participants reported more perceived stigma, indicating there may be cultural differences in IBS-related stigma experience. Symptom severity, disruptiveness, and treatment choices are also implicated in stigma perception and internalization. CONCLUSIONS & INFERENCES: Patients with IBS report both perceived and IS with alienation most reported. However, IS significantly predicts several patient outcomes when controlling for PS. Cultural and illness traits may influence how stigma is perceived and internalized. Future research is warranted.

Gut-directed hypnotherapy significantly augments clinical remission in quiescent ulcerative colitis.

BACKGROUND: Psychotherapy is not routinely recommended for in ulcerative colitis (UC). Gut-directed hypnotherapy (HYP) has been linked to improved function in the gastrointestinal tract and may operate through immune-mediated pathways in chronic diseases. AIMS: To determine the feasibility and acceptability of HYP and estimate the impact of HYP on clinical remission status over a 1-year period in patients with an historical flare rate of 1.3 times per year. METHODS: A total of 54 patients were randomised at a single site to seven sessions of gut-directed HYP (n = 26) or attention control (CON; n = 29) and followed for 1 year. The primary outcome was the proportion of participants in each condition that had remained clinically asymptomatic (clinical remission) through 52 weeks post treatment. RESULTS: One-way analysis of variance comparing HYP and CON subjects on number of days to clinical relapse favoured the HYP condition [F = 4.8 (1, 48), P = 0.03] by 78 days. Chi-squared analysis comparing the groups on proportion maintaining remission at 1 year was also significant [χ²(1) = 3.9, P = 0.04], with 68% of HYP and 40% of CON patients maintaining remission for 1 year. There were no significant differences between groups over time in quality of life, medication adherence, perceived stress or psychological factors. CONCLUSION: This is the first prospective study that has demonstrated a significant effect of a psychological intervention on prolonging clinical remission in patients with quiescent ulcerative colitis (Clinical Trial # NCT00798642).

The adult eosinophilic oesophagitis quality of life questionnaire: a new measure of health-related quality of life.

BACKGROUND: Eosinophilic oesophagitis (EoO) is a chronic disease characterised by significant symptoms and challenging treatment regimens. Health-related quality of life (HRQOL) is a useful way to direct patient care. EoO symptoms and treatment may impact patient HRQOL. Currently, there is no reliable and valid measure of adult EoO patient HRQOL. AIM: To validate the Adult Eosinophilic Oesophagitis Quality of Life (EoO-QOL-A) questionnaire as a measure of HRQOL in this population. METHODS: The EoO patients aged 18-70 recruited via an out-patient GI clinic and two EoO advocacy groups completed the preliminary EoO-QOL-A, demographic and clinical information, and measures of general HRQOL, psychological distress and EoO symptom severity. A subset of patients completed test-retest assessments. Scale reliability, internal consistency, factor structure, concurrent and convergent validity were evaluated. RESULTS: A total of 201 patients have participated. The study sample was primarily Caucasian, college-educated, and evenly split by gender. The average duration of disease was 7 years with duration of symptoms of 26 months prior to diagnosis. Patients reported were using both pharmacological and dietary treatments. Factor analysis yielded a 37-item, 5-factor structure: Eating/Diet Impact, Social Impact, Emotional Impact, Disease Anxiety and Choking Anxiety. The EoO-QOL-A demonstrated excellent internal consistency, split-half and test-retest reliability. Concurrent and convergent validity were supported by moderate correlations with established HRQOL measures, psychological distress and oesophageal symptoms. CONCLUSIONS: The EoO-QOL-A is a valid and reliable disease-specific HRQOL measure for adult EoO patients. Developing the Adult Eosinophilic Oesophagitis Quality of Life is an important step in guiding treatment practices, improving disease education and standardising research protocols.

Esophageal symptoms questionnaire for the assessment of dysphagia, globus, and reflux symptoms: initial development and validation.

Esophageal symptoms often co-occur. A validated self-report measure encompassing multiple esophageal symptoms is necessary to determine their frequency and severity both independently and in association with each other. Such a questionnaire could streamline the diagnostic process and guide patient management. We aimed to develop an integrative measure that provides a clinical 'snapshot' of common esophageal symptoms. Internal reliability and content validity of a 38-item self-report Esophageal Symptoms Questionnaire (ESQ), measuring the frequency and severity of typical esophageal symptoms using Likert-rating scales were assessed in 211 patients presenting to gastroenterology and ENT outpatient tertiary care clinics. Reproducibility, concurrent and predictive validity were evaluated using the reduced-item ESQ. The 38-item ESQ had high internal reliability. Principal component analyses and item reduction methods identified three components, to which 30 of 38 items contributed significantly, providing 59% of total variance. The test-retest correlations were moderate-to-strong for 24 of 30 new items (r(s) ≥ 0.44, P < 0.05). The resultant subscales measuring dysphagia (ESQ-D), globus (ESQ-G), and reflux (ESQ-R) compared well against concurrent physician's 'working' diagnosis (odds ratio 1.04-1.09). The receiver operating characteristics were adequate-to-good for ESQ-D (area under the curve [AUC]= 0.87) and ESQ-G (AUC = 0.74), but poor for ESQ-R (AUC = 0.61) although it matched the content of the validated Reflux Disease Questionnaire. The brief 30-item ESQ shows good internal reliability and content validity as a summary of the extent of dysphagia, globus and reflux symptoms. As a tool measuring more than one esophageal symptom, ESQ could guide patient management by indicating which of the coexisting symptoms needs to be addressed first.