Tiffany Taft

Development and Validation of a Symptom-Based Activity Index for Adults With Eosinophilic Esophagitis

BACKGROUND & AIMS Standardized instruments are needed to assess the activity of eosinophilic esophagitis (EoE) and to provide end points for clinical trials and observational studies. We aimed to develop and validate a patient-reported outcome (PRO) instrument and score, based on items that could account for variations in patient assessments of disease severity. We also evaluated relationships between patient assessment of disease severity and EoE-associated endoscopic, histologic, and laboratory findings. METHODS We collected information from 186 patients with EoE in Switzerland and the United States (69.4% male; median age, 43 y) via surveys (n = 135), focus groups (n = 27), and semistructured interviews (n = 24). Items were generated for the instruments to assess biologic activity based on physician input. Linear regression was used to quantify the extent to which variations in patient-reported disease characteristics could account for variations in patient assessment of EoE severity. The PRO instrument was used prospectively in 153 adult patients with EoE (72.5% male; median age, 38 y), and validated in an independent group of 120 patients with EoE (60.8% male; median age, 40.5 y). RESULTS Seven PRO factors that are used to assess characteristics of dysphagia, behavioral adaptations to living with dysphagia, and pain while swallowing accounted for 67% of the variation in patient assessment of disease severity. Based on statistical consideration and patient input, a 7-day recall period was selected. Highly active EoE, based on endoscopic and histologic findings, was associated with an increase in patient-assessed disease severity. In the validation study, the mean difference between patient assessment of EoE severity (range, 0-10) and PRO score (range, 0-8.52) was 0.15. CONCLUSIONS We developed and validated an EoE scoring system based on 7 PRO items that assess symptoms over a 7-day recall period. Clinicaltrials.gov number: NCT00939263.

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

Aliment Pharmacol Ther 2011; 34: 790–798

Temporal trends in the relative prevalence of dysphagia etiologies from 1999-2009

AIM To examine the relative prevalence and temporal variation of dysphagia etiologies in patients undergoing upper endoscopy (EGD) over the past decade. METHODS EGDs with the indication of dysphagia at an urban, university medical center in 1999, 2004 and 2009 were retrospectively identified from the electronic medical record. The entire patient chart, including EGD, pathology, manometry, radiographic and clinician reports, was reviewed for demographic and clinical data and to determine the etiology of dysphagia. The number of EGDs in which an esophageal biopsy was performed was also noted. Gastroesophageal reflux disease (GERD) as a cause of dysphagia independent of peptic stricture was defined by symptoms with erosive esophagitis or symptom response to proton pump inhibition (PPI). Cases of eosinophilic esophagitis (EoE) were defined by an appropriate clinical history and histological criteria of ≥ 15 eosinophils per high powered field. PPI-responsive esophageal eosinophilia was not routinely reported prior to 2008. Statistical analysis was performed using one-way analysis of variance to analyze for trends between 1999, 2004 and 2009 and a post-hoc Tukey analysis was performed following a significant main effect. RESULTS A total of 1371 cases (mean age 54 years, 43% male) met pre-specified inclusion criteria with 191, 504 and 675 cases in 1999, 2004 and 2009, respectively. Patients were older in 2004 compared to 2009 (mean ± SD, 54.0 ± 15.7 years vs 52.3 ± 16.8 years, P = 0.02) and there were more males in 1999 compared to 2004 (57.5% vs 40.8%, P = 0.005). Overall, GERD (27.6%) and EoE (7.7%) were the most common identifiable causes of dysphagia. An unspecified diagnosis accounted for 21% of overall cases. There were no significant differences in the relative prevalence of achalasia or other motility disorders, peptic stricture, Schatzkis ring, esophageal cancer or unspecified diagnoses over the 10-year time period. There was, however, a decrease in the relative prevalence of GERD (39.3% vs 24.1%, P < 0.001) and increases in the relative prevalence of EoE (1.6% vs 11.2%, P < 0.001) and oropharyngeal disorders (1.6% vs 4.2%, P = 0.02) from 1999 to 2009. Post-hoc analyses determined that the increase in relative prevalence of EoE was significant between 1999 and 2009 as well as 2004 and 2009 (5.4% vs 11.6%, P < 0.001), but not between 1999 and 2004 (1.6% P 5.4%, P = 0.21). On the other hand, the decrease in relative prevalence of GERD was significant between 1999 and 2009 and 1999 and 2004 (39.3% vs 27.7%, P = 0.006), but not between 2004 and 2009 (27.7% vs 24.1%, P = 0.36). There were also significantly more EGDs in which a biopsy was obtained in 1999 compared to 2009 (36.7% vs 68.7%, P < 0.001) as well as between 2004 and 2009 (37.5% vs 68.7%, P < 0.001). While total EGD volume did increase over the 10-year time period, the percentage of EGDs for the indication of dysphagia remained stable making increasing upper endoscopy an unlikely reason for the observed increased prevalence of EoE. CONCLUSION EoE has emerged as a dominant cause of dysphagia in adults. Whether this was due to a rise in disease incidence or increased recognition is unclear.

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

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.

Qualitative assessment of patient-reported outcomes in adults with eosinophilic esophagitis

Goals This study aims to qualitatively describe experiences of adult patients diagnosed with eosinophilic esophagitis (EoE). Specifically, we aim to identify disease-specific concerns related to patient-reported outcomes in this population to inform clinical care and assessment. Background EoE is a chronic inflammatory disease of the esophagus and is increasingly recognized as a cause of dysphagia in adults. On the basis of its symptoms, limited and restrictive treatment options and potential for social and psychological impact, it is logical to expect that the health related quality of life of EoE patients would be an important outcome marker for assessment. Study Twenty-four EoE patients participated in semistructured interviews about their illness experiences. Participants also provided demographic and clinical data, and completed the Medical Outcome Study Short Form 12 to assess mental and physical function. Results Six themes emerged from qualitative analyses which centered around 3 main points: concerns about the illness itself, concerns about swallowing difficulty, and concerns about the impact of EoE on social interactions. Patients were generally open to disclosing their illness status and reported relief at receipt of the EoE diagnosis. EoE patients did not differ from healthy norms for physical well-being, and were similar to comparable illness groups for mental functioning. Conclusions Our study demonstrated that EoE has substantial impact on several psychosocial domains that are not adequately addressed by focused assessment of physical complaints of dysphagia. The results support the importance of development of disease-specific instruments pertaining to quality of life in EoE patients.

The role of self-efficacy in inflammatory bowel disease management: Preliminary validation of a disease-specific measure

Background: Inflammatory bowel diseases (IBDs) require self‐management skills that may be influenced by self‐efficacy (SE). Self‐efficacy represents an individuals perception of his or her ability to organize and execute the behaviors necessary to manage disease. The goal of this study was to develop a valid and reliable measure of IBD‐specific SE that can be used in clinical and research contexts. Methods: One hundred and twenty‐two adults with a verified IBD diagnosis participated in the study. Data were pooled from 2 sources: patients from an outpatient university gastroenterology clinic (n = 42) and a sample of online respondents (n = 80). All participants (N = 122) completed the IBD Self‐Efficacy Scale (IBD‐SES) and the Inflammatory Bowel Disease Questionnaire. Additionally, online participants completed the Brief Symptom Inventory‐18 and the Rosenberg Self‐Esteem Scale, whereas those in the clinic sample completed the Perceived Health Competence Scale, the Perceived Stress Questionnaire, and the Short Form Version 2 Health Survey. Results: The IBD‐SES was initially constructed to identify 4 distinct theoretical domains of self‐efficacy: (1) managing stress and emotions, (2) managing medical care, (3) managing symptoms and disease, and (4) maintaining remission. The 29‐item IBD‐SES has high internal consistency (r = 0.96), high test‐retest reliability (r = 0.90), and demonstrates strong construct and concurrent validity with established measures. Conclusions: The IBD‐SES is a critical first step toward addressing an important psychological construct that could influence treatment outcomes in IBD. (Inflamm Bowel Dis 2011)

The Potential Role of a Self-Management Intervention for Ulcerative Colitis: A Brief Report From the Ulcerative Colitis Hypnotherapy Trial

Inflammatory bowel diseases (IBD) are chronic inflammatory illnesses marked by unpredictable disease flares, which occur spontaneously and/or in response to external triggers, especially personal health behaviors. Behavioral triggers of flare may be responsive to disease self-management programs. We report on interim findings of a randomized controlled trial of gut-directed hypnotherapy (HYP, n = 19) versus active attention control (CON, n = 17) for quiescent ulcerative colitis (UC). To date, 43 participants have enrolled; after 5 discontinuations (1 in HYP) and 2 exclusions due to excessive missing data, 36 were included in this preliminary analysis. Aim 1 was to determine the feasibility and acceptability of HYP in UC. This was achieved, demonstrated by a reasonable recruitment rate at our outpatient tertiary care clinic (20%), high retention rate (88% total), and our representative IBD sample, which is reflected by an equal distribution of gender, an age range between 21 and 69, recruitment of ethnic minorities (∽20%), and disease duration ranging from 1.5 to 35 years. Aim 2 was to estimate effect sizes on key clinical outcomes for use in future trials. Effect sizes (group × time at 20 weeks) were small to medium for IBD self-efficacy (.34), Inflammatory Bowel Disease Questionnaire (IBDQ) total score (.41), IBDQ bowel (.50), and systemic health (.48). Between-group effects were observed for the IBDQ bowel health subscale (HYP > CON; p = .05) at 20 weeks and the Short Form 12 Health Survey Version 2 (SF-12v2) physical component (HYP > CON; p < .05) at posttreatment and 20 weeks. This study supports future clinical trials testing gut-directed HYP as a relapse prevention tool for IBD.

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

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.

Perceptions of illness stigma in patients with inflammatory bowel disease and irritable bowel syndrome

PurposeTo compare the experiences of perceived stigma (PS) in both patients with irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) and examine its relationship to patient-reported outcomes in both patient populations.MethodsIBD and IBS patients were recruited from an outpatient gastroenterology clinic and online via support message boards and classifieds. Participants completed a series of questionnaires to measure the perception of illness stigma, psychological functioning, and clinical and demographic data.ResultsTwo hundred and sixty-nine IBS and 227 IBD patients participated. IBS patients were more likely to report high levels of perceived stigma across a wider range of sources, with the largest difference being for health care providers. Twenty-seven percent of IBS patients reported moderate to high levels of perceived stigma, compared with 8% of IBD. While perception of stigma was correlated with poorer patient-reported outcomes in both patient groups, correlations were larger for IBD compared with IBS.ConclusionsThis study demonstrates that both IBD and IBS patients perceive stigma about their illness. As demonstrated by increased depression and anxiety, decreased self-esteem and self-efficacy, and lower quality of life in both patient groups, PS was shown to have a negative impact on clinical outcomes.

Increased Levels of Stress and Burnout Are Related to Decreased Physician Experience and to Interventional Gastroenterology Career Choice: Findings From a US Survey of Endoscopists

OBJECTIVES:Physician stress and burnout can decrease job satisfaction, increase medical errors, and reduce quality of life. Gastrointestinal endoscopic practice is increasing in complexity, with an associated increase in complications. These factors may result in more stress and burnout in younger gastroenterologists (GEs) and interventional GEs (IGEs) who perform more complex endoscopic procedures. We aimed to create a valid measure of GE endoscopic practice stress and to evaluate stress and burnout related to endoscopist experience and IGE versus non-IGE practice.METHODS:We used both a qualitative and a cross-sectional correlation design. Semistructured interviews were conducted and thematically coded to create a measure of stressors in GE practice, the Gastroenterologist Stress Inventory (GESI). Gastroenterology fellows and attending physicians were approached to participate. Four GEs were interviewed, and 489 completed the online survey. Endoscopists completed the Maslach Burnout Inventory, the GESI, and demographic, training, and practice data.RESULTS:The GESI met reliability standards. Junior IGEs and junior non-IGEs reported more stress related to endoscopic practice than senior attendings. All GEs reported moderate levels of burnout; decreased physician experience was a predictor of burnout for IGEs.CONCLUSIONS:GEs report moderate levels of stress and burnout. IGEs and those who have experienced an endoscopic complication report significantly more stress. Less experience is related to more stress and burnout, with junior IGEs reporting the highest levels.