In their shoes: Health care professionals walking a day in the life of patients with short bowel syndrome & intestinal failure.

BACKGROUND & AIMS: Short bowel syndrome leading to intestinal failure (SBS-IF) is a condition characterised by the inability of the gut to absorb the amount of water, nutrients and micronutrients needed to survive and requires long term home parenteral nutrition (HPN) to sustain life. Health care professionals (HCPs) working with patients with SBS-IF are aware of the daily challenges patients face. However, few have experienced the condition first-hand and put themselves 'in the shoes' of their patients. In Their Shoes (ITS) is an immersive simulation delivered through a smartphone application (app), in which participants experience the typical real-life challenges that somebody with SBS-IF will experience over a 24-h period, including social and psychological challenges. This study evaluated the impact of ITS simulation on HCPs working with adults with SBS-IF. METHODS: A representative sample of 27 multi-disciplinary team (MDT) members working on an Intestinal Failure Unit completed the ITS simulation over a 24-h period. A mixed methods design was used, which included participants completing a survey pre- and post-ITS experience, followed by focus groups and in-depth qualitative interviews. Pre- and post-intervention questions were analysed quantitively via paired t-tests and qualitative data arising from the focus groups and interviews were analysed using inductive thematic analysis. RESULTS: 25 participants (93%) completed 80% of the ITS challenges whilst 27 (100%) completed more than 50% challenges. Participants reported a 16% increase in knowledge, 18% increase in being able to talk to others about SBS and a 2% increase in empathy between pre- and post-simulation. Nineteen team members participated in focus groups and 10 in-depth interviews; qualitative analysis of digital recordings comprised four overarching themes: empathy; admiration and respect; empathy fatigue; learning experience. Despite the small and insignificant increase in empathy scores quantitatively, analysis of open-ended questions and qualitative data found that 74% of participants reported an increase in empathy levels whereas 26% felt it stayed the same. CONCLUSIONS: As a simulation-based learning method, ITS can have a positive impact on HCPs working into the SBS-IF setting. Positive benefits in clinical practice include increased levels of empathy, admiration and respect for patients amongst HCPs. Immersing into the ITS experience also allows HCPs to recognise the function and benefits to MDT working, both in terms of ensuring holistic patient centred care and managing HCP empathy fatigue.

Comfort in Telemedicine Based on Diagnosis and Reason for Referral in Pediatric Gastroenterology

Background: Telemedicine can provide increased patient access to care, cost savings and high patient satisfaction. Payors have extended reimbursement for telemedicine and although few pediatric gastroenterologists had experience with telemedicine before the COVID-19 pandemic, many practices continue to offer this as a care modality model. Comfort in practicing telemedicine for specific conditions amongst NASPGHAN members is not known. This study evaluates comfort in practicing telemedicine for common indications for outpatient GI consultation referral and follow up visit diagnoses. Method(s): In June-August 2020, we surveyed members of NASPGHAN with an instrument that included two multi-select questions: 1) Which of the following reasons for referral would you feel comfortable completing with telemedicine? 2) Which of the following conditions would you feel comfortable using telemedicine for a routine follow up? Results: 136 participants answered the two survey items. Constipation (n=121, 89%), heartburn (n=109, 80%), and infant reflux (n=109, 80%) were the reasons for referral most frequently selected. Referral of jaundice (n=26, 19%), second opinion (n=45, 33%), and poor weight gain (n=51, 38%) received the least mentions. For follow up appointments, diagnoses of celiac disease (n=126, 93%), functional gastrointestinal disorders (n=126, 93%), eosinophilic esophagitis (n=120, 88%) were the three most frequent, while liver transplantation (n=24, 18%), intestinal failure (n=26, 19%), and short bowel syndrome without intestinal failure (n=34, 25%) were the diagnoses selected the least. 14 respondents selected comfort with all new patient reasons for referral and follow up visits. Conclusion(s): There is variability in provider comfort to utilize telemedicine for providing consultation or follow up care based on reason for referral or patient diagnosis. Provider comfort in providing care should be considered when offering telemedicine as a practice model moving forward. Reasons underlying provider dis/comfort should be explored using qualitative methods. (Figure Presented).

A Weighty Matter:Quality Improvement Project in Pediatric Obesity During COVID-19 Pandemic at a Federally Qualified Health Center(FQHC)

Purpose/Objectives: Understand the rates of pediatric obesity in the Inland Empire of Southern California, in the context of COVID quarantine, to improve counseling and treatment of these patients. Design/Methods: A retrospective chart review was performed on all patients seen at a FQHC in Southern California. Patients between 5 and 18, who had a clinic visit between 6/1/2020 to 7/31/2020 for a well-child visit, with at least one other well-child visit in calendar year 2019 and 2018 were included. Patients with congenital heart disease, short gut syndrome, ADHD on stimulant medications, G tube dependence, diseases affecting growth or stature, complex syndromes (CHARGE, VACTERL, DiGeorge), syndromes affected growth, oncologic conditions, intellectual disability, transplant recipients, incomplete BMI data or malnutrition (BMI Z score <= -1) were excluded. BMI values, Z-scores, and percentiles, as well as relative changes from 2018 to 2019, and 2019 to 2020 were analyzed using one-way ANOVA and Tukey post hoc test. Results: There was a statistical difference in BMI between years as determined by a one-way ANOVA (F(2,509) = 2.811, P = 0.05). A Tukey post hoc test revealed that the BMI of students in 2020 was statistically higher (19.87.65, p = 0.05) compared to the BMI in 2018 (18.25.71). There was no statistical difference in BMI between 2020 and 2019, and 2019 and 2018 (Figure 1). When groups were stratified into morbidly obese (BMI >= 99%), obese (BMI >=95% & <99%), overweight (BMI >=85% & <95%), and healthy weight (BMI >=5% & < 85%), patients who were not at a healthy weight increased from 36.8% in 2018 to 40.4% in 2019, to 44.7% in 2020 (Figure 2). As shown in the SANKEY diagram (Figure 3), while there was an initial decline in morbidly obese patients in 2018 to 2019 (-8.3%), there was a relatively large increase from 2019 to 2020 (+45.5%). From 2018 to 2019, 75 out of 141 patients (53.2%) had a decrease in BMI, while in 2019 to 2020 there were 56 out of 141 patients (39.7%) who had a decrease in BMI. Out of the 75 patients who had a decrease in BMI from 2018 to 2019, 49 (65.3%) had a rebound increase in BMI from 2019 to 2020. Conclusion/Discussion: There was a significant increase in overall BMI from 2018 to 2020 with an overall increase in patients who fall into the obese and overweight categories in 2020. 65.3% of patients who had a decreasing BMI from 2018 to 2019 have a rebound increase in BMI in 2020. This can likely be contributed to the COVID-19 pandemic and stay-at-home orders leading to a more sedentary lifestyle. More research should be performed to elicit multifactorial (physical activity, diet, and psychosocial factors) etiology of the worsening obesity epidemic during the COVID-19 pandemic.

Severe acute respiratory syndrome coronavirus 2 antibody prevalence in adult patients with short bowel syndrome-A German multicenter cross-sectional study.

BACKGROUND: Not all patients suffer from a severe course of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, demanding a definition of groups at risk. Short bowel syndrome (SBS) has been assumed to be a risk factor, because of the complexity of disease, the need for interdisciplinary care, and frequent contact with caretakers. We aimed to establish data on the course of infection and prevalence of SARS-CoV-2 seropositivity in SBS patients in Germany. METHODS: From January 2021 until January 2022 a total of 119 patients from three different tertiary care centers with SBS were included. All patients received an antibody test against the nucleocapsid (N) antigen and were asked to fill out a questionnaire, which included frequency of contact with medical personnel, risk behavior and worries. RESULTS: Sixty-seven percent of SBS patients received parenteral nutrition with a median of 6 days per week. The seroprevalence of SARS-CoV-2 antibodies was 7.6% (n = 9). Seven patients with positive antibodies had coronavirus disease 2019 (COVID-19) with a mild course. None of the patients were hospitalized or needed further treatment. There was no difference in willingness to take risks in SARS-CoV-2 antibody-positive and -negative patients (P = 0.61). Patients were predominantly worried about the economy (61%) and transmitting COVID-19 (52%), less frequent (26%) about receiving insufficient medical treatment. CONCLUSION: These are the first clinical results concerning SARS-CoV-2 seropositivity and COVID-19 disease in patients with SBS. The seropositivity is comparable to national data, which we attribute to increased risk awareness and avoidance. Further studies are warranted to investigate effects of COVID-19 infection in SBS patients.

A rare case report of short bowel anastomosis after acute mesenteric ischaemia in Covid-19 postive patient.

Acute mesenteric ischaemia is one of the serious abdominal surgical emergency, which has got very high morbidity and mortality. During the pandemic of COVID-19, besides respiratory complications, the virus was causing venous and arterial thromboembolism that can lead to acute mesenteric ischaemia in otherwise healthy individuals. Early diagnosis and suitable surgical procedures are the key to the better outcome of this disease. Surgical resection of gangrenous gut, leaving healthy gut is an important step of this operation. Leaving less than 200 cm of small intestine leads to short bowel syndrome which has got its own complication. This case report is on a healthy COVID-19 positive patient who presented with acute mesenteric ischaemia. After surgical resection only 1.5 feet small bowel (60 cm) was left behind and anastomosis was done with healthy transverse colon. He was later managed for complications of small bowel syndrome and was discharged successfully with dietary modifications.

Beyond clinical outcomes: using a disease-specific pilot survey to explore parent perceptions of wellbeing for children with short bowel syndrome

Background: Pediatric patients with short bowel syndrome (SBS) have complex medical needs that may impact their quality of life (QoL). Research has generally found children with SBS/intestinal failure (IF) to have impaired health-related QoL, but the mechanisms by which SBS shapes QoL for these patients remain unclear. Methods: A disease-specific mixed-methods pilot survey investigating wellbeing for children with SBS and their families was developed collaboratively by community stakeholders and clinicians and distributed via convenience sampling. The survey included fourteen diseasespecific items (e.g., PN, EN, toileting, eating, medical procedures), each scored on a 5-point Likert scale (1=no negative impact on child's wellbeing, 5=high negative impact on child's wellbeing);a not applicable option was additionally included for each item. Upon completion of the matrix, respondents were prompted to explain their response for each item scored with a 4 or 5 (indicating a high negative impact on child QoL). An option to describe any additional items perceived as negatively impacting their child's QoL was provided. Descriptive analyses of closed-and open-ended responses were conducted to investigate parent-perceived impact of disease-specific items on child wellbeing. Results: A total of 21 parents completed the survey. Items least frequently reported by parents as having a strong negative impact on their child's wellbeing were pain/discomfort or vomiting (23%) and utilization of PN (29%). Items related to absorption, including oral eating (33%), output-related issues (38%), and enteral feeds (41%), were more frequently reported by parents as strongly negatively impacting their child's wellbeing. Half of survey respondents (50%) perceived sleep or fatigue to have a strong negative impact. Items outside of the medical/physical domain were reported by 62% of parents as having a strong negative impact on their child's wellbeing: 39% of parents perceived their child's social life (independent of the impacts of the COVID-19 pandemic) to have suffered because of the condition;39% highlighted the impact of medical procedures on their child's mental health. Over half of respondents (53%) perceived two or fewer items to have a strong negative impact on their child's overall wellbeing. An additional 29% of respondents perceived 3-6 items, while 19% reported 7 or more items as having a strong negative impact on their child's wellbeing. Qualitative analyses of open-ended responses revealed no additional SBS-related items were perceived by parents as negatively shaping child wellbeing, suggesting the survey reached thematic saturation. Conclusion: These exploratory data provide insights into the parent-perceived factors shaping wellbeing for children with SBS. Better understanding how- and to what extent- these factors impact child QoL longitudinally is central to providing whole-person, patient-centered care. The conceptualization of overall wellbeing as a measurable outcome may provide members of the care team with important information to consider along with clinical factors and offer opportunities to discuss goals of care with children and their families. Future research should investigate the validity and reliability of a disease-specific child QoL measure.