Federica Rodofile, Paola Melli, A. Di Siena, Paola Cogo
Celiac crisis (CC) is a rare complication of celiac disease (CD), usually observed in younger children with unrecognized CD or poor compliance with a gluten‐free diet (GFD). We present a case of celiac crisis in a 3‐year‐old girl who was recently diagnosed with celiac disease. She was referred to our clinic with anasarca, tetany, and severe malnutrition, with hypokalemia, hypocalcemia, hypomagnesemia, and hypoalbuminemia. During hospitalization, she presented hypertransaminasemia with positive anti‐actin smooth muscle antibodies (SMA). Abdominal ultrasound and liver biopsy were normal, excluding autoimmune hepatitis. Liver involvement is a common CD extraintestinal manifestation and cryptogenic form is the most common. SMA positivity could be associated with a systemic immune cross reaction. Our patient normalized liver values after 2 months of GFD.
乳糜泻危象（CC）是乳糜泻（CD）的一种罕见并发症，通常发生在年龄较小的未确诊 CD 或对无麸质饮食（GFD）依从性较差的儿童身上。我们报告了一例最近被诊断为乳糜泻的 3 岁女孩的乳糜泻危象。她因腹痛、四肢抽搐和严重营养不良，伴有低钾血症、低钙血症、低镁血症和低白蛋白血症而被转诊至我院。住院期间，她出现高转氨酶血症，抗肌动蛋白平滑肌抗体（SMA）阳性。腹部超声波检查和肝活检结果正常，排除了自身免疫性肝炎的可能。肝脏受累是常见的 CD 肠外表现，而隐源性肝脏受累最为常见。SMA阳性可能与全身免疫交叉反应有关。我们的患者在接受 2 个月的 GFD 治疗后，肝脏数值恢复正常。
{"title":"Celiac crisis, transient hypertransaminasemia and positive smooth muscle antibodies (SMA): A celiac disease case report","authors":"Federica Rodofile, Paola Melli, A. Di Siena, Paola Cogo","doi":"10.1002/jpr3.12056","DOIUrl":"https://doi.org/10.1002/jpr3.12056","url":null,"abstract":"Celiac crisis (CC) is a rare complication of celiac disease (CD), usually observed in younger children with unrecognized CD or poor compliance with a gluten‐free diet (GFD). We present a case of celiac crisis in a 3‐year‐old girl who was recently diagnosed with celiac disease. She was referred to our clinic with anasarca, tetany, and severe malnutrition, with hypokalemia, hypocalcemia, hypomagnesemia, and hypoalbuminemia. During hospitalization, she presented hypertransaminasemia with positive anti‐actin smooth muscle antibodies (SMA). Abdominal ultrasound and liver biopsy were normal, excluding autoimmune hepatitis. Liver involvement is a common CD extraintestinal manifestation and cryptogenic form is the most common. SMA positivity could be associated with a systemic immune cross reaction. Our patient normalized liver values after 2 months of GFD.","PeriodicalId":501015,"journal":{"name":"JPGN reports","volume":"28 6","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140441801","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Albert Fuchs, Berrit L Cordes, Rolf van Dick, Gianna Ebers, Antonia Kaluza, Christiane Konietzny, Ulrich Baumann
The goal of this longitudinal study was to reduce anxiety and pain in children with chronic conditions from the gastrointestinal tract during venipuncture. These children undergo regular venipuncture as part of their medical management and the procedure is often accompanied with anxiety and pain. In addition, children as well as their parents and health care professionals (HCPs) often suffer “compassionate pain” because of emotional interference.In a realistic clinical setting, different psychological and medical interventions were examined: (1) Psychoeducational brochures and (2) four different medical‐technical interventions during venipuncture. In a large hospital in Germany, 169 children, their parents, and HCPs were asked to rate anxiety and pain during venipuncture before and after the intervention.Children showed a clear preference for some of the medical‐technical interventions. Using Linear Mixed Models anxiety and pain rated by the children themselves showed no significant reduction. However, parents and HCPs reported a significant reduction. Age, gender, and status of liver transplantation were associated with a reduction in anxiety and pain in most of the analyses.Both psychoeducational brochures and medical‐technical interventions had a positive impact on anxiety and pain. However, effectivity for the medical–technical interventions was lower than in previous studies utilizing individual interventions. Reasons for this difference as well as possibilities to improve the intervention are discussed. In addition, this study provides practical day‐to‐day information about the implementation of interventions for the work in pediatric units such as when and how to provide psychoeducational materials.
{"title":"Interventions to alleviate anxiety and pain during venipuncture in children with chronic gastrointestinal and/or liver disease: A single‐center prospective observational study","authors":"Albert Fuchs, Berrit L Cordes, Rolf van Dick, Gianna Ebers, Antonia Kaluza, Christiane Konietzny, Ulrich Baumann","doi":"10.1002/jpr3.12053","DOIUrl":"https://doi.org/10.1002/jpr3.12053","url":null,"abstract":"The goal of this longitudinal study was to reduce anxiety and pain in children with chronic conditions from the gastrointestinal tract during venipuncture. These children undergo regular venipuncture as part of their medical management and the procedure is often accompanied with anxiety and pain. In addition, children as well as their parents and health care professionals (HCPs) often suffer “compassionate pain” because of emotional interference.In a realistic clinical setting, different psychological and medical interventions were examined: (1) Psychoeducational brochures and (2) four different medical‐technical interventions during venipuncture. In a large hospital in Germany, 169 children, their parents, and HCPs were asked to rate anxiety and pain during venipuncture before and after the intervention.Children showed a clear preference for some of the medical‐technical interventions. Using Linear Mixed Models anxiety and pain rated by the children themselves showed no significant reduction. However, parents and HCPs reported a significant reduction. Age, gender, and status of liver transplantation were associated with a reduction in anxiety and pain in most of the analyses.Both psychoeducational brochures and medical‐technical interventions had a positive impact on anxiety and pain. However, effectivity for the medical–technical interventions was lower than in previous studies utilizing individual interventions. Reasons for this difference as well as possibilities to improve the intervention are discussed. In addition, this study provides practical day‐to‐day information about the implementation of interventions for the work in pediatric units such as when and how to provide psychoeducational materials.","PeriodicalId":501015,"journal":{"name":"JPGN reports","volume":"13 25","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139962697","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
William F Abel, Varun Kesar, Reid D. Wasserman, Manoj Kumar, Vishal Patel, P. Yeaton, Vivek Kesar
Pancreatitis is a condition much more commonly found in adults, but when diagnosed in the pediatric population, is often due to medications, congenital pathology, and critical illness. This patient had previously undergone treatment with 6‐mercaptopurine and presented with pancreatitis that eventually worsened to a walled‐off necrotic collection with paracolic extensions reaching the pelvis. Given clinical worsening with development of shock, procedural options for source control were weighed with gastroenterology, pediatric surgery, and interventional radiology, before pancreatic necrosectomy was determined to be the treatment of choice, given the adjacency of the collection to the stomach. A total of three separate endoscopic pancreatic necrosectomy procedures were performed and the patient s clinical status improved greatly, with vast improvement later seen on outpatient imaging. This successful treatment course argues for the efficacy of pancreatic necrosectomy even in very large walled off collections, and most importantly, lead to a positive outcome in this young patient.
{"title":"Massive infected pancreatic necrosis in an 8‐year‐old: Endoscopic management","authors":"William F Abel, Varun Kesar, Reid D. Wasserman, Manoj Kumar, Vishal Patel, P. Yeaton, Vivek Kesar","doi":"10.1002/jpr3.12052","DOIUrl":"https://doi.org/10.1002/jpr3.12052","url":null,"abstract":"Pancreatitis is a condition much more commonly found in adults, but when diagnosed in the pediatric population, is often due to medications, congenital pathology, and critical illness. This patient had previously undergone treatment with 6‐mercaptopurine and presented with pancreatitis that eventually worsened to a walled‐off necrotic collection with paracolic extensions reaching the pelvis. Given clinical worsening with development of shock, procedural options for source control were weighed with gastroenterology, pediatric surgery, and interventional radiology, before pancreatic necrosectomy was determined to be the treatment of choice, given the adjacency of the collection to the stomach. A total of three separate endoscopic pancreatic necrosectomy procedures were performed and the patient s clinical status improved greatly, with vast improvement later seen on outpatient imaging. This successful treatment course argues for the efficacy of pancreatic necrosectomy even in very large walled off collections, and most importantly, lead to a positive outcome in this young patient.","PeriodicalId":501015,"journal":{"name":"JPGN reports","volume":"28 4","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139779656","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
A. Rosell-Camps, Lucinda F. Bunce, Bernardí Barceló‐Martí, Artur Sharluyan‐Petrosyan
The “hypotonic drink syndrome” is characterized by loss of appetite, normal activity levels and, in some cases, intestinal disturbances in children with an intake of more than 30% of the recommended daily calories in the form of non‐dairy drinks. Diarrhea and growth retardation are possible complications due to the amount of nonnutritive calorie intake (“empty calories”) contained in this type of hypotonic beverages.We present the case of an 11‐month‐old boy who suffered a “Squash drinking syndrome” requiring admission to the pediatric intensive care unit because of a status seizure secondary to a severe hyponatremia (118 mmol/L) due to massive ingestion of hypotonic drinks, such as squash. The seizure did not subside until sodium levels reached 123 mmol/L with hypertonic saline (3%). Neurological, renal, digestive, endocrine and metabolic problems were all ruled out and normal sodium levels were maintained with dietary recommendations and a restriction of hypotonic fluid intake.To prevent these situations it is important to be aware of this entity and to know how to identify the possible complications that may appear after excessive ingestion of hypotonic drinks, as in the case of our patient, ranging from lack of appetite, growth failure and diarrhea, to a status seizure.
{"title":"Status seizures as a secondary effect from the “squash drinking syndrome” in an infant","authors":"A. Rosell-Camps, Lucinda F. Bunce, Bernardí Barceló‐Martí, Artur Sharluyan‐Petrosyan","doi":"10.1002/jpr3.12043","DOIUrl":"https://doi.org/10.1002/jpr3.12043","url":null,"abstract":"The “hypotonic drink syndrome” is characterized by loss of appetite, normal activity levels and, in some cases, intestinal disturbances in children with an intake of more than 30% of the recommended daily calories in the form of non‐dairy drinks. Diarrhea and growth retardation are possible complications due to the amount of nonnutritive calorie intake (“empty calories”) contained in this type of hypotonic beverages.We present the case of an 11‐month‐old boy who suffered a “Squash drinking syndrome” requiring admission to the pediatric intensive care unit because of a status seizure secondary to a severe hyponatremia (118 mmol/L) due to massive ingestion of hypotonic drinks, such as squash. The seizure did not subside until sodium levels reached 123 mmol/L with hypertonic saline (3%). Neurological, renal, digestive, endocrine and metabolic problems were all ruled out and normal sodium levels were maintained with dietary recommendations and a restriction of hypotonic fluid intake.To prevent these situations it is important to be aware of this entity and to know how to identify the possible complications that may appear after excessive ingestion of hypotonic drinks, as in the case of our patient, ranging from lack of appetite, growth failure and diarrhea, to a status seizure.","PeriodicalId":501015,"journal":{"name":"JPGN reports","volume":"2 7","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139779194","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
A. Rosell-Camps, Lucinda F. Bunce, Bernardí Barceló‐Martí, Artur Sharluyan‐Petrosyan
The “hypotonic drink syndrome” is characterized by loss of appetite, normal activity levels and, in some cases, intestinal disturbances in children with an intake of more than 30% of the recommended daily calories in the form of non‐dairy drinks. Diarrhea and growth retardation are possible complications due to the amount of nonnutritive calorie intake (“empty calories”) contained in this type of hypotonic beverages.We present the case of an 11‐month‐old boy who suffered a “Squash drinking syndrome” requiring admission to the pediatric intensive care unit because of a status seizure secondary to a severe hyponatremia (118 mmol/L) due to massive ingestion of hypotonic drinks, such as squash. The seizure did not subside until sodium levels reached 123 mmol/L with hypertonic saline (3%). Neurological, renal, digestive, endocrine and metabolic problems were all ruled out and normal sodium levels were maintained with dietary recommendations and a restriction of hypotonic fluid intake.To prevent these situations it is important to be aware of this entity and to know how to identify the possible complications that may appear after excessive ingestion of hypotonic drinks, as in the case of our patient, ranging from lack of appetite, growth failure and diarrhea, to a status seizure.
{"title":"Status seizures as a secondary effect from the “squash drinking syndrome” in an infant","authors":"A. Rosell-Camps, Lucinda F. Bunce, Bernardí Barceló‐Martí, Artur Sharluyan‐Petrosyan","doi":"10.1002/jpr3.12043","DOIUrl":"https://doi.org/10.1002/jpr3.12043","url":null,"abstract":"The “hypotonic drink syndrome” is characterized by loss of appetite, normal activity levels and, in some cases, intestinal disturbances in children with an intake of more than 30% of the recommended daily calories in the form of non‐dairy drinks. Diarrhea and growth retardation are possible complications due to the amount of nonnutritive calorie intake (“empty calories”) contained in this type of hypotonic beverages.We present the case of an 11‐month‐old boy who suffered a “Squash drinking syndrome” requiring admission to the pediatric intensive care unit because of a status seizure secondary to a severe hyponatremia (118 mmol/L) due to massive ingestion of hypotonic drinks, such as squash. The seizure did not subside until sodium levels reached 123 mmol/L with hypertonic saline (3%). Neurological, renal, digestive, endocrine and metabolic problems were all ruled out and normal sodium levels were maintained with dietary recommendations and a restriction of hypotonic fluid intake.To prevent these situations it is important to be aware of this entity and to know how to identify the possible complications that may appear after excessive ingestion of hypotonic drinks, as in the case of our patient, ranging from lack of appetite, growth failure and diarrhea, to a status seizure.","PeriodicalId":501015,"journal":{"name":"JPGN reports","volume":"760 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139838995","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
William F Abel, Varun Kesar, Reid D. Wasserman, Manoj Kumar, Vishal Patel, P. Yeaton, Vivek Kesar
Pancreatitis is a condition much more commonly found in adults, but when diagnosed in the pediatric population, is often due to medications, congenital pathology, and critical illness. This patient had previously undergone treatment with 6‐mercaptopurine and presented with pancreatitis that eventually worsened to a walled‐off necrotic collection with paracolic extensions reaching the pelvis. Given clinical worsening with development of shock, procedural options for source control were weighed with gastroenterology, pediatric surgery, and interventional radiology, before pancreatic necrosectomy was determined to be the treatment of choice, given the adjacency of the collection to the stomach. A total of three separate endoscopic pancreatic necrosectomy procedures were performed and the patient s clinical status improved greatly, with vast improvement later seen on outpatient imaging. This successful treatment course argues for the efficacy of pancreatic necrosectomy even in very large walled off collections, and most importantly, lead to a positive outcome in this young patient.
{"title":"Massive infected pancreatic necrosis in an 8‐year‐old: Endoscopic management","authors":"William F Abel, Varun Kesar, Reid D. Wasserman, Manoj Kumar, Vishal Patel, P. Yeaton, Vivek Kesar","doi":"10.1002/jpr3.12052","DOIUrl":"https://doi.org/10.1002/jpr3.12052","url":null,"abstract":"Pancreatitis is a condition much more commonly found in adults, but when diagnosed in the pediatric population, is often due to medications, congenital pathology, and critical illness. This patient had previously undergone treatment with 6‐mercaptopurine and presented with pancreatitis that eventually worsened to a walled‐off necrotic collection with paracolic extensions reaching the pelvis. Given clinical worsening with development of shock, procedural options for source control were weighed with gastroenterology, pediatric surgery, and interventional radiology, before pancreatic necrosectomy was determined to be the treatment of choice, given the adjacency of the collection to the stomach. A total of three separate endoscopic pancreatic necrosectomy procedures were performed and the patient s clinical status improved greatly, with vast improvement later seen on outpatient imaging. This successful treatment course argues for the efficacy of pancreatic necrosectomy even in very large walled off collections, and most importantly, lead to a positive outcome in this young patient.","PeriodicalId":501015,"journal":{"name":"JPGN reports","volume":"185 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139839426","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
R. Mercedes, S. Harpavat, Paula M. Hertel, Ghadir Sasa, Susan Kirk, Kalyani Patel, K. Mysore
Herbal and dietary supplements (HDS) are a common etiology of drug induced liver injury and, specifically, Herbalife® supplements have been implicated. Hepatitis associated aplastic anemia (HAAA) is a rare and potentially fatal complication after acute hepatitis characterized by pancytopenia. While there have been rare cases of HDS leading to HAAA, no cases of Herbalife® induced liver injury leading to HAAA have been reported from this specific HDS. We report a unique case of severe aplastic anemia developing after sub‐fulminant liver failure associated with chronic HDS use. This case illustrates the importance of warning the public about HDS as their use continues to increase. It is not only important to recognize HDS as etiology, but also for healthcare providers to carefully monitor these patients after resolution of liver injury for the development of HAAA.
{"title":"Herbal and dietary supplement induced liver injury leading to hepatitis‐associated severe aplastic anemia: A case report","authors":"R. Mercedes, S. Harpavat, Paula M. Hertel, Ghadir Sasa, Susan Kirk, Kalyani Patel, K. Mysore","doi":"10.1002/jpr3.12041","DOIUrl":"https://doi.org/10.1002/jpr3.12041","url":null,"abstract":"Herbal and dietary supplements (HDS) are a common etiology of drug induced liver injury and, specifically, Herbalife® supplements have been implicated. Hepatitis associated aplastic anemia (HAAA) is a rare and potentially fatal complication after acute hepatitis characterized by pancytopenia. While there have been rare cases of HDS leading to HAAA, no cases of Herbalife® induced liver injury leading to HAAA have been reported from this specific HDS. We report a unique case of severe aplastic anemia developing after sub‐fulminant liver failure associated with chronic HDS use. This case illustrates the importance of warning the public about HDS as their use continues to increase. It is not only important to recognize HDS as etiology, but also for healthcare providers to carefully monitor these patients after resolution of liver injury for the development of HAAA.","PeriodicalId":501015,"journal":{"name":"JPGN reports","volume":"151 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139843580","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pediatric inflammatory bowel disease (IBD) is a chronic illness with various treatments, including ostomy surgery. Ostomy‐related medical decision‐making (MDM) is complex for multidisciplinary healthcare professionals (HCPs). This study sought to understand national multidisciplinary HCPs' perceptions about pediatric IBD ostomy surgery in the United States.This cross‐sectional REDCap survey recruited HCPs in pediatric IBD HCP roles from the ImproveCareNow (ICN) Learning Health System. The survey gathered data on, (1) demographics, (2) participants' perspectives on patients/families' ostomy perceptions, (3) participants' own perspectives on ostomies, and (4) participants' perspectives on multidisciplinary collaboration in ostomy surgery.Participants (n = 69, across n = 30 American ICN sites) were 84% White, 62% female, and 54% gastroenterologists. In reflecting on patients/families' perceptions, participants endorsed most (86%) view ostomies as a “failure,” various psychosocial concerns (e.g., 97% endorsed body image concerns), and most (81%) have moderate to significant stigma about ostomies. In reflecting on their own perceptions, nearly half (44%) endorsed some to moderate stigma about ostomies and felt ostomy discussions were difficult when families had negative perceptions (88%). Over half (54%) endorsed currently having multidisciplinary care for pediatric IBD surgery. Most (70%) endorsed variability in the amount and/or quality of multidisciplinary collaboration.MDM related to pediatric IBD ostomy surgery presents nuanced clinical complexities for HCPs. This work underscores interest in multidisciplinary care, notable ostomy‐related psychosocial needs, and ostomy‐related stigma. Future work should develop systematic approaches to multidisciplinary pediatric IBD ostomy care, bolster psychosocial support, and evaluate how systematic care may impact psychosocial, and healthcare utilization outcomes.
{"title":"Is it “all in the bag?” Multidisciplinary perspectives on ostomy surgery in pediatric IBD across the ImproveCareNow network","authors":"J. David, Jennifer L. Dotson, Laura Mackner","doi":"10.1002/jpr3.12044","DOIUrl":"https://doi.org/10.1002/jpr3.12044","url":null,"abstract":"Pediatric inflammatory bowel disease (IBD) is a chronic illness with various treatments, including ostomy surgery. Ostomy‐related medical decision‐making (MDM) is complex for multidisciplinary healthcare professionals (HCPs). This study sought to understand national multidisciplinary HCPs' perceptions about pediatric IBD ostomy surgery in the United States.This cross‐sectional REDCap survey recruited HCPs in pediatric IBD HCP roles from the ImproveCareNow (ICN) Learning Health System. The survey gathered data on, (1) demographics, (2) participants' perspectives on patients/families' ostomy perceptions, (3) participants' own perspectives on ostomies, and (4) participants' perspectives on multidisciplinary collaboration in ostomy surgery.Participants (n = 69, across n = 30 American ICN sites) were 84% White, 62% female, and 54% gastroenterologists. In reflecting on patients/families' perceptions, participants endorsed most (86%) view ostomies as a “failure,” various psychosocial concerns (e.g., 97% endorsed body image concerns), and most (81%) have moderate to significant stigma about ostomies. In reflecting on their own perceptions, nearly half (44%) endorsed some to moderate stigma about ostomies and felt ostomy discussions were difficult when families had negative perceptions (88%). Over half (54%) endorsed currently having multidisciplinary care for pediatric IBD surgery. Most (70%) endorsed variability in the amount and/or quality of multidisciplinary collaboration.MDM related to pediatric IBD ostomy surgery presents nuanced clinical complexities for HCPs. This work underscores interest in multidisciplinary care, notable ostomy‐related psychosocial needs, and ostomy‐related stigma. Future work should develop systematic approaches to multidisciplinary pediatric IBD ostomy care, bolster psychosocial support, and evaluate how systematic care may impact psychosocial, and healthcare utilization outcomes.","PeriodicalId":501015,"journal":{"name":"JPGN reports","volume":"69 39","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139844372","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Reply to letter to the editor in response to: Distinguishing autoimmune hepatitis from steatohepatitis in adolescents with obesity and positive screening alanine aminotransferase","authors":"Amber Hildreth, J. Schwimmer","doi":"10.1002/jpr3.12049","DOIUrl":"https://doi.org/10.1002/jpr3.12049","url":null,"abstract":"","PeriodicalId":501015,"journal":{"name":"JPGN reports","volume":"55 5","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139844620","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pediatric inflammatory bowel disease (IBD) is a chronic illness with various treatments, including ostomy surgery. Ostomy‐related medical decision‐making (MDM) is complex for multidisciplinary healthcare professionals (HCPs). This study sought to understand national multidisciplinary HCPs' perceptions about pediatric IBD ostomy surgery in the United States.This cross‐sectional REDCap survey recruited HCPs in pediatric IBD HCP roles from the ImproveCareNow (ICN) Learning Health System. The survey gathered data on, (1) demographics, (2) participants' perspectives on patients/families' ostomy perceptions, (3) participants' own perspectives on ostomies, and (4) participants' perspectives on multidisciplinary collaboration in ostomy surgery.Participants (n = 69, across n = 30 American ICN sites) were 84% White, 62% female, and 54% gastroenterologists. In reflecting on patients/families' perceptions, participants endorsed most (86%) view ostomies as a “failure,” various psychosocial concerns (e.g., 97% endorsed body image concerns), and most (81%) have moderate to significant stigma about ostomies. In reflecting on their own perceptions, nearly half (44%) endorsed some to moderate stigma about ostomies and felt ostomy discussions were difficult when families had negative perceptions (88%). Over half (54%) endorsed currently having multidisciplinary care for pediatric IBD surgery. Most (70%) endorsed variability in the amount and/or quality of multidisciplinary collaboration.MDM related to pediatric IBD ostomy surgery presents nuanced clinical complexities for HCPs. This work underscores interest in multidisciplinary care, notable ostomy‐related psychosocial needs, and ostomy‐related stigma. Future work should develop systematic approaches to multidisciplinary pediatric IBD ostomy care, bolster psychosocial support, and evaluate how systematic care may impact psychosocial, and healthcare utilization outcomes.
{"title":"Is it “all in the bag?” Multidisciplinary perspectives on ostomy surgery in pediatric IBD across the ImproveCareNow network","authors":"J. David, Jennifer L. Dotson, Laura Mackner","doi":"10.1002/jpr3.12044","DOIUrl":"https://doi.org/10.1002/jpr3.12044","url":null,"abstract":"Pediatric inflammatory bowel disease (IBD) is a chronic illness with various treatments, including ostomy surgery. Ostomy‐related medical decision‐making (MDM) is complex for multidisciplinary healthcare professionals (HCPs). This study sought to understand national multidisciplinary HCPs' perceptions about pediatric IBD ostomy surgery in the United States.This cross‐sectional REDCap survey recruited HCPs in pediatric IBD HCP roles from the ImproveCareNow (ICN) Learning Health System. The survey gathered data on, (1) demographics, (2) participants' perspectives on patients/families' ostomy perceptions, (3) participants' own perspectives on ostomies, and (4) participants' perspectives on multidisciplinary collaboration in ostomy surgery.Participants (n = 69, across n = 30 American ICN sites) were 84% White, 62% female, and 54% gastroenterologists. In reflecting on patients/families' perceptions, participants endorsed most (86%) view ostomies as a “failure,” various psychosocial concerns (e.g., 97% endorsed body image concerns), and most (81%) have moderate to significant stigma about ostomies. In reflecting on their own perceptions, nearly half (44%) endorsed some to moderate stigma about ostomies and felt ostomy discussions were difficult when families had negative perceptions (88%). Over half (54%) endorsed currently having multidisciplinary care for pediatric IBD surgery. Most (70%) endorsed variability in the amount and/or quality of multidisciplinary collaboration.MDM related to pediatric IBD ostomy surgery presents nuanced clinical complexities for HCPs. This work underscores interest in multidisciplinary care, notable ostomy‐related psychosocial needs, and ostomy‐related stigma. Future work should develop systematic approaches to multidisciplinary pediatric IBD ostomy care, bolster psychosocial support, and evaluate how systematic care may impact psychosocial, and healthcare utilization outcomes.","PeriodicalId":501015,"journal":{"name":"JPGN reports","volume":"23 7","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139784161","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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