"Grief Explodes all Relationships": Experiences of Grief and Coping Among Parents and Siblings Following the Death of a Child.

The death of a child is an intense loss for families, which impacts the wellbeing of parents, surviving siblings, and the family as a whole. This study expanded on existing literature by collecting qualitative accounts from bereaved parents and siblings about their experiences before, during, and after the death of a child in their family. In total, 15 participants from 9 families completed semi-structured interviews. Findings highlighted three periods of the grieving process, which were not linear but rather ongoing and often happening simultaneously: (1) Crisis; (2) Learning to cope; and (3) Establishment of a new equilibrium. Parents and siblings reported experiences unique to their role in the family and developmental stage, as well as shared experiences within the family system. Findings have implications for palliative care and bereavement professionals in terms of supporting parent, sibling, and family coping before, during, and after the death of a child.

Engagement in GI Behavioral Health Is Associated with Reduced Portal Messages, Phone Calls, and ED Visits.

BACKGROUND AND AIMS: Chronic digestive disorders are associated with increased costs for healthcare systems and often require provision of both urgent care and non-face-to-face (non-F2F) care, such as responding to patient messages. Numerous benefits of integrated gastroenterology (GI) behavioral health have been identified; however, it is unclear if integrated care impacts healthcare utilization, including urgent care and non-F2F contact. We sought to investigate the association between patient engagement with GI behavioral health and healthcare utilization. METHODS: We performed a retrospective chart review study of adult patients who were referred for and completed at least one behavioral health appointment between January 1, 2019 and December 21, 2021 in the Gastroenterology and Hepatology department of a large academic medical center. Data on electronic medical record (EMR) messages, phone calls, and Emergency Department utilization were collected 6 months before and 9 months after patient engagement with GI behavioral health. RESULTS: 466 adult patients completed at least one behavioral health visit from 2019 to 2021. Overall, messages, phone calls, and ED visits all decreased significantly from the 6 months before behavioral health treatment to 6 months after (all P values < 0.001). CONCLUSION: Engagement with integrated GI behavioral health is associated with reduced non-F2F care and emergency department utilization in patients with chronic digestive disorders. Increasing access to GI behavioral health may result in reduced provider workload and healthcare system costs.

Stigma experiences of patients living with gastroparesis.

INTRODUCTION: Stigmatization toward chronic digestive diseases is well documented. Patients perceive others hold negative stereotypes toward their disease and may internalize these beliefs as true. Because of this, stigmatization is associated with poor outcomes across disease-related and psychosocial domains. No study to date evaluates stigmatization toward patients living with gastroparesis (GP), a poorly understood disease affecting gastric motility. We aimed to gain deep understanding of stigma in patients living with gastroparesis. METHODS: Patients with GP were recruited from two university-based gastroenterology practices as well as patient advocacy support groups. Participants underwent a semi-structured qualitative interview about their experiences with stigma related to their GP diagnosis, which were audio-recorded and transcribed to text for analysis using a grounded theory approach. Major themes with representative quotations were documented. RESULTS: Twenty-three patients participated. The majority were White, female, with idiopathic GP under the care of a gastroenterologist. All patients reported stigma related to GP. Seven major themes were found: stigma from healthcare providers, stigma within interpersonal relationships, GP as an invisible disease, blame, unsolicited suggestions on how to manage disease, disclosure, and stigma resistance. CONCLUSIONS: This is the first study to describe stigma experiences in patients with GP. The results suggest patients experience considerable stigmatization toward their condition from multiple sources. Patients also demonstrated resistance to negative beliefs, which can serve as a protective factor for the negative effects of disease stigma. Clinicians should be aware of stigma in GP patients, including their own potential internal biases and behaviors.

Validation in French of the Brief Esophageal Dysphagia Questionnaire in Patients Referred For Esophageal Manometry.

A brief esophageal dysphagia questionnaire (BEDQ) was recently developed in English to evaluate frequency and intensity of dysphagia. Our aim was to validate this questionnaire in French in a cohort of patients referred for esophageal manometry. Patients referred for esophageal high resolution manometry were offered to fill out different questionnaires including Eckart score, GERDQ score and BEDQ. BEDQ was translated in French by two French native speakers and experts in esophageal motility. Patients were grouped according to the indications of esophageal high resolution manometry (dysphagia, GERD, others). The total BEDQ score was calculated and compared between groups. The validation method used the assessment of internal consistency with Cronbach's alpha and reliability with Guttman split-half reliability. BEDQ questionnaire was completed by 608 patients (44% males, mean age 54 years). The total score had an excellent internal consistency (Cronbach's alpha = 0.90) and reliability (Guttman statistic = 0.92). The correlation was good with Eckardt score (r = 0.65, p < 0.001) but poor with the GERDQ score (r = 0.21, p < 0.01). Patients referred for dysphagia (n = 197) had an Eckardt score and a BEDQ score significantly higher than those referred for GERD or other indications (5.48 vs 3.65 and 3.53 respectively for Eckardt score and 15.85 vs 4.64 and 5.78 for BEDQ, p < 0.001). BEDQ is a valid questionnaire in French to assess dysphagia in clinical practice. It remains to be determined if this score is sensitive to symptom variation and thus useful for the follow up of patients with dysphagia.

Validation of the French version of the esophageal hypervigilance and anxiety scale.

INTRODUCTION: An esophageal hypervigilance and anxiety scale (EHAS) was developed in English to assess the psychological process in patients with esophageal disorders. The aim of the current study was to validate this scale in French. PATIENTS AND METHODS: Patients referred for esophageal high resolution manometry (HRM) were offered to fill out different questionnaires including EHAS, Eckart score and gastro-esophageal reflux disease-questionnaire (GERDQ) score. EHAS was translated in French by 2 French native speaker experts in esophageal motility. Patients were grouped according to the indications of HRM (dysphagia, reflux, other). The total EHAS score was calculated and compared between groups. The validation method used the assessment of internal consistency with Cronbach's α and reliability with Guttman split-half reliability. RESULTS: Among the 607 patients who accepted to fill out questionnaires, the EHAS questionnaire was completed and analyzable in 469 patients. The total score had an excellent internal consistency (Cronbach's α = 0.91) and reliability (Guttman statistic = 0.86). EHAS score was not different between groups while Eckardt score was logically higher in patients with dysphagia than in others (p < 0.001) and GERDQ score was higher in patients with reflux than in those with dysphagia (p < 0.001). Despite different load on anxiety and hypervigilance scales, inter-item correlations and average scores did not differ between the original and the French EHAS. CONCLUSION: EHAS is a valid questionnaire in French. It can be interpreted using the original EHAS score. Further studies are required to demonstrate the utility of this score in patients' management.

Initial Assessment of Post-traumatic Stress in a US Cohort of Inflammatory Bowel Disease Patients.

BACKGROUND: Post-traumatic stress (PTS), or the psycho-physiological response to a traumatic or life-threatening event, is implicated in medical patient outcomes. Emerging evidence suggests a complex relationship between PTS, the brain-gut axis, the gut microbiome, and immune function. Inflammatory bowel disease (IBD) may be susceptible to PTS and its subsequent impacts. To date, no study has evaluated PTS in IBD in the United States. METHODS: Adult patients with IBD were recruited from an outpatient gastroenterology practice, via social media, and via a research recruitment website. Patients with irritable bowel syndrome (IBS) were recruited as a comparison group. Participants completed demographic and disease information, surgical and hospitalization history, and the PTSD Checklist-Civilian Version (PCL-C). Statistical analyses evaluated rates of PTS in IBD and IBS, including differences between groups for PTS severity. Regression analyses determined potential predictors of PTS. RESULTS: One hundred eighty-eight participants (131 IBD, 57 IBS) completed the study. Thirty-two percent of IBD and 26% of IBS patients met the criteria for significant PTS symptoms based on PCL-C cutoffs. Inflammatory bowel disease patients are more likely to attribute PTS to their disease than IBS patients. Crohn's disease (CD) patients appear to be the most likely to experience PTS, including those being hospitalized or undergoing ileostomy surgery. Symptom severity is the greatest predictor of PTS for ulcerative colitis and IBS. CONCLUSIONS: Although PTS is relevant in both IBS and IBD, IBD patients are seemingly more susceptible to PTS due their disease experiences, especially CD patients. The nature of PTS symptoms may contribute to IBD disease processes, most notably through sleep disturbance and ANS arousal. Clinicians should assess for PTS in IBD patients as standard of care, especially after a hospitalization or surgery.

Inflammatory Bowel Disease Patient Experiences with Psychotherapy in the Community.

This study aimed to characterize patient expectations for integrating mental health into IBD treatment, describe experiences with psychotherapy, and evaluate therapy access and quality. Adults with IBD were recruited online and via a gastroenterology practice. Participants, 162 adults with IBD, completed online questionnaires. The sample was primarily middle-aged, White, and female. Sixty percent had Crohn's Disease. Disease severity was mild to moderate; 38% reported utilizing therapy for IBD-specific issues. The greatest endorsed barrier to psychotherapy was its cost. Psychotherapy was perceived as leading to modest gains in quality of life, emotional well-being, and stress reduction. Participants reported a disparity between their desire for mental health discussions and their actual interactions with providers. The majority of participants (81%) stated there are insufficient knowledgeable therapists. A significant number of patients with IBD endorsed the desire for mental health integration into care. Disparities exist in reported provider-patient communication on these topics. There appears to be a dearth of IBD-knowledgeable therapists in the community.

The dysphagia stress test for rapid assessment of swallowing difficulties in esophageal conditions.

BACKGROUND: Esophageal dysphagia is a common symptom in gastroenterology practice. Current rapid assessment tools are limited to oropharyngeal dysphagia and do not translate well to esophageal conditions. We aim to create a novel tool, the dysphagia stress test (DST), to evaluate swallowing in patients with esophageal disease characterized by dysphagia. METHODS: Adults with eosinophilic esophagitis (EoE), gastroesophageal reflux disease (GERD), achalasia, and dysphagia not otherwise specified (NOS) participated. Patient controls with non-esophageal diagnoses and healthy controls were also recruited. Participants completed the DST with five bolus challenges: water, applesauce, rice, bread, barium tablet and rated their swallowing difficulty and pain. A study clinician observed and documented water use and refusal of any challenges. Participants also completed measures of esophageal symptoms, hypersensitivity, and symptom anxiety to evaluate the DST validity. Collinearity of bolus challenges guided item reduction. KEY RESULTS: A total of 132 subjects participated. Both control groups and GERD patients had the best swallowing ability, while achalasia, EOE, and dysphagia NOS scored poorer. About 90% of patients were able to attempt or pass each of the bolus challenges, suggesting high acceptability. Construct validity of the DST is evidenced by modest negative correlations with symptom severity, hypersensitivity, and anxiety. The DST does not appear to be influenced by brain-gut processes. Applesauce, rice, and bread demonstrated collinearity; thus, the DST was reduced to three challenges. CONCLUSIONS & INFERENCES: The DST is the first rapid assessment tool designed for gastroenterology clinics with direct observation of swallowing ability across several conditions to mitigate issues related to patient self-report of esophageal symptoms.

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.

Social Support for Exercise as a Predictor of Weight and Physical Activity Status Among Puerto Rican and Mexican Men: Results From the Latino Men's Health Initiative.

Social support is an important factor in increasing positive health outcomes and positive health behaviors across a variety of disease states including obesity. However, research examining the relationship between social support for exercise and weight and physical activity status, particularly among Latino men, is lacking. This paper examined whether social support for exercise predicted weight and physical activity status and whether the direction of these relationships differ as a function of Hispanic/Latino background (Puerto Rican/Mexican). Participants were 203 men who participated in a National Institutes of Health (NIH)-funded study addressing culture- and obesity-related variables. Both family participation social support and f amily rewards and punishment social support predicted higher weight status ( p < .005 and p < .05, respectively). Friend participation social support did not predict weight status. The direction of the relationship between weight status and family participation social support, family rewards and punishment social support, and friend participation social support did not significantly differ as a function of Hispanic/Latino background. The direction of the relationship between physical activity status and family participation social support, family rewards and punishment social support, and friend participation social support did not significantly differ as a function of Hispanic/Latino background. Findings suggest that increased social support for exercise from family members may be focused on those who need it most-overweight and obese participants. Additional research is needed to explore sociocultural factors that may promote social support, physical activity, and weight loss and maintenance in Puerto Rican and Mexican men.

The Reflux Improvement and Monitoring (TRIM) Program Is Associated With Symptom Improvement and Weight Reduction for Patients With Obesity and Gastroesophageal Reflux Disease.

OBJECTIVES: Current healthcare systems do not effectively promote weight reduction in patients with obesity and gastroesophageal reflux disease (GERD). The Reflux Improvement and Monitoring (TRIM) program provides personalized, multidisciplinary, health education and monitoring over 6 months. In this study we aimed to (i) measure the effectiveness of TRIM on GERD symptoms, quality of life, and weight, and (ii) examine patient health beliefs related to TRIM. METHODS: This prospective mixed methods feasibility study was performed at a single center between September 2015 and February 2017, and included adult patients with GERD and a body mass index ≥30 kg/m2. Quantitative analysis consisted of a pre- to post-intervention analysis of TRIM participants (+TRIM Cohort) and a multivariable longitudinal mixed model analysis of +TRIM vs. patients who declined TRIM (-TRIM Cohort). Primary outcomes were change in patient-reported GERD symptom severity (GerdQ) and quality of life (GerdQ-DI), and change in percent excess body weight (%EBW). Qualitative analysis was based on two focus groups of TRIM participants. RESULTS: Among the +TRIM cohort (n=52), mean baseline GerdQ scores (8.7±2.9) decreased at 3 months (7.5±2.2; P<0.01) and 6 months (7.4±1.9; P=0.02). Mean GerdQ-DI scores decreased, but did not reach statistical significance. Compared with the -TRIM cohort (n=89), reduction in %EBW was significantly greater at 3, 6, and 12 months among the +TRIM cohort (n=52). In qualitative analysis, patients unanimously appreciated the multidisciplinary approach and utilized weight loss effectively to improve GERD symptoms. CONCLUSIONS: In this mixed methods feasibility study, participation in TRIM was associated with symptom improvement, weight reduction, and patient engagement.

Cultural Variables Underlying Obesity in Latino Men: Design, Rationale and Participant Characteristics from the Latino Men's Health Initiative.

Overweight and obesity are associated with significant health problems and rates of obesity are high among Latino men. This paper describes the design, rationale and participant characteristics of the key demographic variables assessed in an NIH-funded study (R21-CA143636) addressing culture and several obesity-related variables (diet, physical activity, and body image) among Mexican and Puerto Rican men using a community-based participatory research framework. Participants completed objective measures (height, weight, body fat, hip, waist), a health and culture interview, a diet questionnaire, and used an accelerometer to measure their level of physical activity. A total of 203 participants completed the measures and the health and culture interview and 193 completed all study components. Puerto Ricans were older than Mexicans (p < .0001) and there were significant differences in marital status (p < .05), country of birth (p < .05), smoking (p < .05) and work status (p < .001). There were no significant differences in religion, education, health insurance, Body Mass Index, body fat, hip and waist measurements, and the language preference of the interview. Results have implications for the development of a future intervention that incorporates the role of cultural factors into a community participatory obesity intervention for Latino men.