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.

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

BACKGROUND: Eosinophilic 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. AIMS: This 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. METHODS: Seven patients diagnosed with EG or EGE participated in semi-structured interviews assessing common domains of HRQOL. RESULTS: Four 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. CONCLUSIONS: This 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.

Lack of Knowledge and Low Readiness for Health Care Transition in Eosinophilic Esophagitis and Eosinophilic Gastroenteritis.

OBJECTIVES: A growing population of adolescents/young adults with eosinophilic esophagitis (EoE) and eosinophilic gastroenteritis (EGE) will need to transition from pediatric to adult health providers. Measuring health care transition (HCT) readiness is critical, but no studies have evaluated this process in EoE/EGE. We determined the scope and predictors of HCT knowledge in patients and parents with EoE/EGE and measured HCT readiness in adolescents/young adults. METHODS: We conducted an online survey of patients 13 years or older and parents of patients with EoE/EGE who were diagnosed when 25 years or younger. Parents answered questions regarding their children and their own knowledge of HCT. HCT readiness was assessed in adolescents/young adults aged 13 to 25 years with the Self-Management and Transition to Adulthood with Rx Questionnaire (a 6-domain self-report tool) with a score range of 0 to 90. RESULTS: Four hundred fifty participants completed the survey: 205 patients and 245 parents. Included in the analysis (those diagnosed with EoE/EGE at age 25 years or younger) were 75 of 205 patients and children of 245 parent respondents. Overall, 78% (n = 52) of the patients and 76% (n = 187) of parents had no HCT knowledge. Mean HCT readiness score in adolescents/young adults (n = 50) was 30.4 ±â€Š11.3 with higher scores in domains of provider communication and engagement during appointments. Mean parent-reported (n = 123) score was 35.6 ±â€Š9.7 with higher scores in medication management and disease knowledge. CONCLUSIONS: There was a significant deficit in HCT knowledge, and HCT readiness scores were lower than other chronic health conditions. HCT preparation and readiness assessments should become a priority for adolescents/young adults with EoE/EGE and their parents.

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.

Disease-specific self-efficacy in the eosinophilic gastrointestinal disorders.

Eosinophilic gastrointestinal disorders (EGIDs) are chronic inflammatory conditions with increasing global prevalence. Self-efficacy is important for patients' ability to manage chronic disease. We sought to evaluate disease-specific self-efficacy in the EGIDs via a modified version of the Inflammatory Bowel Disease Self-Efficacy Scale (IBD-SES). Ninety-one Participants reported demographic, clinical, and psychosocial variables. The IBD-SES demonstrated excellent reliability and validity in this population. Self-efficacy was higher in men, patients with less severe disease, and those who had consulted a dietitian. The IBD-SES is a useful measure of disease-specific self-efficacy in the EGIDs. Further research is necessary to understand the role of self-efficacy in the management of these illnesses.

Behavioral feeding problems and parenting stress in eosinophilic gastrointestinal disorders in children.

BACKGROUND: Children with eosinophilic gastrointestinal disorders (EGID) and their families are asked to adhere to dietary restrictions which can present significant daily challenges. However, little is known about child and family functioning and adaptation and the impact of psychosocial functioning (e.g., behavioral feeding problems) on adherence to dietary restrictions in this pediatric population. METHODS: We conducted a gender- and age-matched case-control study wherein parents of children with EGID and healthy control children completed measures of behavioral feeding problems, parenting stress, and adherence to prescribed dietary restrictions. RESULTS: Children with EGID (n = 92) have significantly higher levels of behavioral feeding problems than healthy controls (n = 89; t = 5.7, p < 0.001; t = 7.9, p < 0.001). In particular, younger children demonstrated higher levels of behavioral feeding problems than older children. While behavioral feeding problems were not predictive of adherence to dietary restriction recommendations, they were positively associated with parenting stress. CONCLUSIONS: The study results indicate that, for families caring for a child with EGID, higher levels of behavioral feeding problems are associated with parent maladjustment or dysfunction. A multidisciplinary treatment team is needed to provide comprehensive psychosocial and feeding evaluations and treatment in EGID families.

Behavioral functioning and treatment adherence in pediatric eosinophilic gastrointestinal disorders.

OBJECTIVE: To examine behavioral predictors of treatment adherence in patients with eosinophilic gastrointestinal disorders (EGID). METHODS: Participants were 96 patients 2.5-18 yr of age with eosinophilic esophagitis or eosinophilic gastroenteritis and their caregivers (mother, father). We assessed maternal and paternal report of child/adolescent internalizing symptoms (e.g., anxiety, depression) and externalizing symptoms (e.g., aggression, anger) using the Behavior assessment system for children, 2nd edition (BASC-2). A multi-informant adherence assessment approach and an 80% cut point were used to classify patients as adherent or non-adherent. RESULTS: Sociodemographic predictors did not distinguish between adherent and non-adherent patients. Maternal report of internalizing symptoms significantly correlated with non-adherence (p < 0.001). Post hoc probing revealed a significant contribution of depression, with depressed patients being more likely (OR = 7.27; p < 0.05) to be non-adherent than non-depressed patients. Paternal report of internalizing and externalizing symptoms was not associated with non-adherence. CONCLUSIONS: Maternal report of patient internalizing behavioral symptoms, particularly depression, is significantly associated with non-adherence in patients with EGID. These symptoms are potential risk factors and should be considered when assessing and treating non-adherence. Clinical care of patients with EGID should include routine screening for depression.

Preliminary evaluation of maternal caregiver stress in pediatric eosinophilic gastrointestinal disorders.

OBJECTIVE: To characterize caregiver stress (CS) in parents of children with Eosinophilic Gastrointestinal Disorders (EGIDs) and understand relationships with psychological functioning and child behavior. METHODS: Caregivers with a child (0-17 years) with EGID completed questionnaires for demographics, EGID severity, treatments, CS, psychological distress, self-efficacy, and child behaviors. RESULTS: A total of 163 caregivers (98% mother, 94% Caucasian) participated. CS correlated with psychological distress, income, child behavioral problems, treatments, and disease severity. Children were rated higher than age-specific norms for emotional difficulties. Behavioral difficulties associated with gender, age, EGID severity, and duration. Parent psychological distress was most strongly associated with CS. Parental self-efficacy, dietary treatments, and child emotional difficulties were also related to stress. CONCLUSIONS: Mothers reported stress and psychological distress from caring for a child with EGID. The relationship between these variables suggests these parents may benefit from supportive psychotherapy interventions. Evaluation of parental self-efficacy and child behavior is also warranted.

Eosinophilic ulcer: the role of stress-induced psychoneuroimmunologic factors.

INTRODUCTION: Eosinophilic ulcer (EU) is a rare pathology and its etiology is still slightly known. It is a benign lesion characterized by fast-growing ulceration with elevated and indurated borders, most commonly affecting the tongue. CASE REPORT: The authors describe a case of EU on a lingual border that was initiated and had its clinical behavior altered by the psychological stress the patient was experiencing. DISCUSSION: This paper discusses the stress effects that alter the individual's immunologic response, thus attracting mast cells and eosinophils towards the mucosal epithelium, which are involved in eosinophilic ulcer. The authors make an association between eosinophilic ulcer and atopic dermatitis, two diseases that appear to have a similar, though not fully defined, etiology. The psychological stress factor was considered a predisponent factor for eosinophilic ulcer etiology and its interference in the etiology and evolution of this disease should be considered.

Psychological distress in patients with morphea and eosinophilic fasciitis.

OBJECTIVE: To examine the level of psychological distress and factors contributing to distress in patients with morphea or eosinophilic fasciitis. DESIGN: Cross-sectional study. SETTING: Dermatology outpatient clinic of a university hospital. PARTICIPANTS: Of 120 patients with morphea or eosinophilic fasciitis diagnosed between December 1, 1994, and July 15, 2007, who were enrolled in the study, only 74 completed questionnaires were suitable for data analysis. MAIN OUTCOME MEASURES: Self-reported responses on the Impact of Chronic Skin Diseases on Daily Life scale measure psychological distress, specifically anxiety and depressed mood. RESULTS: Psychological functioning was generally impaired in patients with skin disease, particularly among patients with generalized morphea and eosinophilic fasciitis. Twenty-eight patients (38%) were at risk of depression or anxiety. Higher levels of psychological distress were significantly related to greater severity of skin disease; more pain and fatigue; impact of disease on daily life; more perceived stigmatization; illness cognitions of greater helplessness; and less acceptance and less perceived social support. CONCLUSIONS: Physical and psychosocial aspects play a substantial role in the quality of life for patients with morphea. Physicians should be encouraged to assess the physical and psychosocial factors when treating patients with sclerotic skin diseases. This approach could improve quality of life and ultimately lead to improved dermatological treatment outcomes.

Evaluation of the child who has eosinophilic esophagitis.

Children who have eosinophilic esophagitis require comprehensive evaluation before treatment and ongoing assessment during treatment. When completed at the appropriate times and under well-controlled circumstances, investigation yields the correct diagnosis, assures recognition of sequelae or recurrence of the inflammation, or confirms whether therapy has been effective. Proper management of each child depends on compulsive follow-up until all of the therapeutic goals have been achieved and the child is on a stable regimen without esophageal inflammation. This article summarizes the issues facing the patient and the physician during this process.

Psychological impact of eosinophilic esophagitis on children and families.

Because eosinophilic esophagitis (EoE) has only recently been recognized and described, systematic research regarding the natural history of the disease and the short- and long-term effects of treatment is in its infancy. Clinical experience indicates that disease symptoms and treatments can have profound effects on the quality of life of affected children and their families. The responses of children and adolescents are variable, and are dependent on developmental level, temperament, and pre-existing psychological adjustment. Although parents of chronically ill children typically experience increased burden and stress, it is possible that the uncertainties currently associated with EoE contribute to even higher levels of anxiety. Research studies are needed to investigate the impact of EoE symptoms and of current treatments on quality of life and psychological adjustment in children and their families.

Dissociation between symptoms and histological severity in pediatric eosinophilic esophagitis.

OBJECTIVES: The relation between patient symptoms and histological severity of eosinophilic esophagitis (EE) is not known. We created a pediatric EE symptom score (PEESS) and compared the results with histological findings in the esophagus. PATIENTS AND METHODS: Subjects ages 3 to 18 years with a histological diagnosis of EE or their parent completed a survey rating the frequency and severity of their gastrointestinal symptoms. Scores ranged from 0 to 98. Eosinophil numbers in esophageal biopsy specimens were correlated with the PEESS. RESULTS: A total of 49 subjects completed the PEESS. The symptom score did not correlate with the peak eosinophil count (r = 0.079). Newly diagnosed, untreated EE subjects (N = 15) had a mean score of 24.7 +/- 16.4 with a modest correlation between the PEESS and the number of eosinophils in the distal esophagus (r = 0.37). The mean PEESS score in the 34 treated patients was lower than in untreated patients (15.6 +/- 12.9; P = 0.046). The mean score for treated patients in histological remission was the same as for treated patients with active EE, regardless of treatment type. Abdominal pain was the most frequent and severe symptom reported. Among 20 of the 34 subjects (58.8%) in histological remission, 17 (85%) continued to report symptoms with a mean score of 17.4 +/- 9.9 (range 1-38). Three children with active histological EE (10%) reported no symptoms. CONCLUSIONS: Children with untreated EE had a higher PEESS than treated subjects. Symptoms persisted in 85% of EE patients despite histological resolution and 10% with active EE reported no symptoms. Our data indicate a dissociation between symptoms and histology in pediatric EE.

Eosinophilic meningoencephalitis: psychiatric presentation and treatment.

Eosinophilic meningoencephalitis (EM) is usually a self-limited neurological illness commonly accompanied by a variety of neurological symptoms. The presence of acute psychotic symptoms in EM, however, has not previously been reported, and there is no literature to guide its treatment and management. In this case report, the onset of psychotic symptoms in a hypoactive delirium and their significant improvement following the administration of atypical antipsychotics are described in a boy with EM. This case report demonstrates the efficacy and safety of antipsychotic agents during the acute phase of meningoencephalitis.

The natural history and complications of eosinophilic esophagitis.

Eosinophilic esophagitis is a chronic disease limited to the esophagus and has a persistent or spontaneously fluctuating course. So far it does not seem to limit life expectancy, but it often substantially impairs the quality of life. To date, there has been no association with malignant conditions, but there is concern that the chronic, uncontrolled inflammation will evoke irreversible structural alterations of the esophagus, leading to tissue fibrosis, stricture formation, and impaired function. This esophageal remodeling may result in several disease-inherent and procedure-related complications.

Neurologic dysfunction in the idiopathic hypereosinophilic syndrome.

Three specific patterns of neurologic deficit were seen in a group of 52 patients with the idiopathic hypereosinophilic syndrome. Central nervous system dysfunction was seen in 7 patients (15%), 4 of whom had a distinctive encephalopathy characterized by behavioral disturbances and upper motor neuron signs. Peripheral neuropathy was found in 27 patients (52%), with a sensory polyneuropathy the commonest form (in 23 patients), although mononeuritis multiplex and radiculopathy were also seen. Central nervous system abnormalities from embolic disorders were seen in 6 patients (12%). Thus, a total of 65% of these patients had some neurologic dysfunction. Although the spectrum of neurologic disease is broad and includes very different manifestations, we conclude that distinct patterns of neurologic involvement are characteristic of this syndrome.