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Sedation‐free transnasal esophagoscopy to evaluate and monitor esophageal diseases in children with esophageal atresia‐tracheoesophageal fistula 无镇静经鼻食管镜检查评估和监测食管闭锁-气管食管瘘患儿的食管疾病
Pub Date : 2024-03-13 DOI: 10.1002/jpr3.12063
Michael Joseph, Michelle M. Corrado, Eunice Odiase, Joel A. Friedlander, Clint Smith, Nathalie Nguyen
Patients with esophageal atresia and tracheoesophageal fistula (EA‐TEF) are at increased risk of conditions including gastroesophageal reflux, peptic esophagitis, gastric metaplasia, anastomotic strictures, eosinophilic esophagitis, and dysphagia. Patients with TEF‐EA may need serial endoscopy in their lifetime given the known short‐ and long‐term GI complications. There has been increased interest in pediatric unsedated transnasal endoscopy (TNE) as an endoscopic alternative as it is lower cost, has shorter recovery time, and eliminates potential risks associated with anesthesia. We report on the use of TNE with EA‐TEF in four patients: One patient had gastroesophageal reflux disease, one patient had eosinophilic esophagitis and TNE was used for surveillance in two patients. Use of TNE allowed for close endoscopic monitoring and changes in medication management. The third and fourth patients underwent TNE as part of routine EA‐TEF screening which is recommended by societal guidelines (Krishnan et al, J Pediatr Gastroenterol Nutr. 2016;63(5):550‐570). Unsedated TNE is an alternative endoscopic approach in the management of patients with EA‐TEF.
食管闭锁和气管食管瘘(EA-TEF)患者发生胃食管反流、消化性食管炎、胃变性、吻合口狭窄、嗜酸性粒细胞食管炎和吞咽困难等疾病的风险增加。鉴于已知的短期和长期消化道并发症,TEF-EA 患者可能终生都需要进行连续的内窥镜检查。小儿无麻醉经鼻内镜检查(TNE)作为内镜检查的一种替代方法,因其成本较低、恢复时间较短,并可消除与麻醉相关的潜在风险,而受到越来越多的关注。我们报告了在四名患者中使用 TNE 和 EA-TEF 的情况:其中一名患者患有胃食管反流病,一名患者患有嗜酸性粒细胞食管炎,还有两名患者使用 TNE 进行监测。使用 TNE 可以进行密切的内镜监测,并改变用药方法。第三名和第四名患者接受了 TNE,作为社会指南推荐的 EA-TEF 常规筛查的一部分(Krishnan 等人,J Pediatr Gastroenterol Nutr.无隔热TNE是治疗EA-TEF患者的另一种内镜方法。
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引用次数: 0
Shwachman–Diamond syndrome mimicking mitochondrial hepatopathy 模仿线粒体肝病的 Shwachman-Diamond 综合征
Pub Date : 2024-03-13 DOI: 10.1002/jpr3.12064
Odelya Kaufman, Colleen Donnelly, Emalyn E. Cork, Maria I. Fiel, Jaime Chu, Jaya Ganesh
Shwachman–Diamond syndrome (SDS) is a genetic disorder caused by mutations in the Shwachman–Bodian–Diamond syndrome (SBDS) gene. The syndrome is characterized by multiorgan dysfunction primarily involving the bone marrow and exocrine pancreas. Frequently overlooked is the hepatic dysfunction seen in early childhood which tends to improve by adulthood. Here, we report a child who initially presented with failure to thrive and elevated transaminases, and was ultimately diagnosed with SDS. A liver biopsy electron micrograph revealed hepatocytes crowded with numerous small mitochondria, resembling the hepatic architecture from patients with inborn errors of metabolism, including mitochondrial diseases. To our knowledge, this is the first report of the mitochondrial phenotype in an SDS patient. These findings are compelling given the recent cellular and molecular research studies which have identified SBDS as an essential regulator of mitochondrial function and have also implicated SBDS in the maintenance of mitochondrial DNA.
舒瓦赫曼-博迪恩-钻石综合征(SDS)是一种由舒瓦赫曼-博迪恩-钻石综合征(SBDS)基因突变引起的遗传性疾病。该综合征的特征是多器官功能障碍,主要涉及骨髓和胰腺外分泌。经常被忽视的是儿童早期出现的肝功能障碍,这种情况在成年后往往会得到改善。在此,我们报告了一名最初表现为发育不良和转氨酶升高的患儿,他最终被诊断为 SDS。肝脏活检电子显微照片显示,肝细胞内密集分布着许多小线粒体,与先天性代谢异常(包括线粒体疾病)患者的肝脏结构相似。据我们所知,这是第一份关于 SDS 患者线粒体表型的报告。最近的细胞和分子研究发现,SBDS 是线粒体功能的重要调节因子,而且 SBDS 与线粒体 DNA 的维护也有关联,因此这些发现令人信服。
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引用次数: 0
Concurrent cecal lipoma and Crohn's disease in a pediatric patient: A conservative approach 一名儿童患者同时患有盲肠脂肪瘤和克罗恩病:保守疗法
Pub Date : 2024-03-13 DOI: 10.1002/jpr3.12061
Ryan Shargo, Morgan Ekblad, Jessica V Baran, Jerry M. Brown, Wilfredo Chamizo, Sara Karjoo, Michael J Wilsey
We report the case of a 14‐year‐old patient with a known history of Crohn's disease who was incidentally diagnosed with an asymptomatic cecal lipoma. A routine surveillance colonoscopy as part of the management of the patient's Crohn's Disease revealed a well‐defined, submucosal, yellowish mass in the patient's cecum. Histopathological examination of a biopsy specimen revealed submucosal adipose tissue, consistent with the endoscopic images showing the characteristic appearance of the lipoma. A computed tomography examination further confirmed the diagnosis. While colonic lipomas are infrequent and typically manifest later in life, few cases report the coexistence of a cecal lipoma with Crohn's disease, particularly in the pediatric population. In this case, managing this dual condition posed a notable challenge. Here, we present the conservative approach to managing a pediatric patient with cecal lipoma and Crohn's disease. The decision to leave the lipoma in situ was based on the absence of symptoms and potential risks associated with surgical removal.
我们报告了一例 14 岁患者的病例,该患者已知有克罗恩病史,却意外被诊断出患有无症状盲肠脂肪瘤。在对该患者进行克罗恩病治疗的过程中,例行结肠镜检查发现患者盲肠内有一个界限清楚的粘膜下淡黄色肿块。活检标本的组织病理学检查发现了黏膜下脂肪组织,与内窥镜图像显示的脂肪瘤特征一致。计算机断层扫描进一步证实了诊断结果。虽然结肠脂肪瘤并不常见,而且通常在晚期才出现,但很少有病例报告盲肠脂肪瘤与克罗恩病同时存在,尤其是在儿童群体中。在本病例中,如何处理这种双重病症是一个显著的挑战。在此,我们将介绍一种保守方法,用于治疗患有盲肠脂肪瘤和克罗恩病的儿童患者。之所以决定让脂肪瘤留在原位,是因为患者没有症状,而且手术切除存在潜在风险。
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引用次数: 0
Johanson–Blizzard syndrome caused by novel UBR1 mutation in four Saudi patients 四名沙特患者的新型 UBR1 基因突变导致约翰森-布莱兹综合征
Pub Date : 2024-03-01 DOI: 10.1002/jpr3.12057
Khalid Noli, N. Aleysae, Ismail Alzahrani, Ahmed Al‐Ghamdi, Mohammed Alkazmi, Ahmed Almasoudi
Johanson–Blizzard syndrome (JBS) is a rare genetic disorder caused by Ubiquitin Protein Ligase E3 Component N‐Recognin1 (UBR1) gene mutations. It is characterized by exocrine pancreatic insufficiency, craniofacial deformities, sensorineural hearing loss, and a broad variety of intellectual disabilities. The aim of our study is to report four pediatric cases (three of which are siblings, and the fourth patient is unrelated) that presented some features of JBS. The cases have been confirmed by genetic testing to have mutations in the UBR1 gene. This case series study was conducted retrospectively, giving a detailed description of the demographic and clinical information of these four cases, and reflecting our experience with this subset of patients. All these cases have been treated at the King Faisal Specialist Hospital and Research Center, Jeddah, Saudi Arabia, and were identified by their clinical and laboratory markers that favor JBS. A novel homozygous missense mutation c.2075 T > C (p. lle692Thr) in exon 18 (UBR1: NM_174916.3) was identified and confirmed by Sanger sequencing in all our cases outlined in this paper. These presented cases illustrate the phenotypic variability and complexity of JBS and the importance of physical examination to reach a diagnosis. The identified novel mutation in this study broadens the spectrum of UBR1 mutations that contribute to JBS.
约翰森-布莱兹综合征(Johanson-Blizzard Syndrome,JBS)是一种罕见的遗传性疾病,由泛素蛋白连接酶 E3 成分 N-Recognin1(UBR1)基因突变引起。其特征是胰腺外分泌功能不全、颅面畸形、感音神经性听力损失和多种智力障碍。我们的研究旨在报告四例表现出 JBS 某些特征的儿科病例(其中三例为兄弟姐妹,第四例为非亲缘关系患者)。这些病例经基因检测证实存在 UBR1 基因突变。本病例系列研究以回顾性方式进行,详细描述了这四例患者的人口统计学和临床信息,并反映了我们对这部分患者的治疗经验。所有这些病例都曾在沙特阿拉伯吉达的费萨尔国王专科医院和研究中心接受治疗,并通过有利于 JBS 的临床和实验室标志物进行了鉴定。本文概述的所有病例中,外显子 18(UBR1:NM_174916.3)上都发现了一个新的同源错义突变 c.2075 T > C (p. lle692Thr),并通过桑格测序得到了证实。这些病例说明了 JBS 的表型变异性和复杂性,以及体格检查对诊断的重要性。本研究中发现的新型突变扩大了导致 JBS 的 UBR1 突变的范围。
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引用次数: 0
Duodenal obstruction: A rare complication of severe acute pancreatitis in children 十二指肠梗阻:儿童重症急性胰腺炎的罕见并发症
Pub Date : 2023-12-28 DOI: 10.1002/jpr3.12034
Olivier Leclercq, Laurie Lecomte, X. Stephenne, I. Scheers
Duodenal obstruction (DO) is an uncommon complication of pancreatitis. It has been described in groove and severe acute and chronic pancreatitis in adults but, to the best of our knowledge, it has not yet been reported in pediatric acute pancreatitis. Current guidelines comment on management of several early and late‐onset complications, but DO is not mentioned. We describe two patients with acute necrotizing pancreatitis who presented with several complications including walled‐off necrosis and DO. In adults, DO is generally managed with adapted nutrition but may require surgical bypass, such as gastroenterostomy. Our patients were managed conservatively and fully recovered 2 months after DO diagnosis. DO may require lengthy hospitalizations and markedly restrict patients' quality of life; however, prolonged conservative treatment was effective in our patients and should be considered even in severe pediatric cases.
十二指肠梗阻(DO)是胰腺炎的一种不常见并发症。成人的槽沟和重症急慢性胰腺炎中都曾出现过这种并发症,但据我们所知,小儿急性胰腺炎中还没有出现过这种并发症。目前的指南对几种早期和晚期并发症的处理进行了评论,但并未提及 DO。我们描述了两名急性坏死性胰腺炎患者,他们出现了多种并发症,包括贴壁坏死和 DO。在成人中,DO 一般通过调整营养来控制,但可能需要外科旁路,如胃肠造口术。我们的患者接受了保守治疗,并在确诊 DO 两个月后完全康复。DO 可能需要长时间住院治疗,并明显限制患者的生活质量;但是,长期保守治疗对我们的患者很有效,即使是严重的儿科病例也应考虑长期保守治疗。
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引用次数: 0
Neurometabolism and brain morphometry in an adolescent female with an extra‐hepatic congenital portosystemic shunt 患有肝外先天性门静脉分流术的青少年女性的神经代谢和脑形态测量
Pub Date : 2023-12-28 DOI: 10.1002/jpr3.12035
Isaline Chabbey, C. Cudalbu, Eugénie Barras, Sylviane Hanquinet, Bénédicte Maréchal, A. Rougemont, Julie Wacker, Florence Zangas‐Gheri, V. McLin
Chronic hepatic encephalopathy (CHE) has been reported both in patients with congenital porto‐systemic shunts (CPSS) and chronic liver disease. CHE is difficult to recognize in children as there is no clear definition and its manifestations are highly variable. CHE is associated with variations in brain volumes and metabolites that have already been demonstrated using 1.5‐3T MRI systems. However, the in‐depth study of brain metabolism requires the high spectral resolution of high magnetic fields.We analyzed the neurometabolic profile, brain volumes and T1 relaxation times of a child with a CPSS using high field proton magnetic resonance spectroscopy (1H MRS, 7T) combined with MRI and compared it to an age‐matched control group. We also evaluated the impact of shunt closure on neurocognitive symptoms using adapted neuropsychological tests.7T MRS revealed a significant increase in glutamine compared to controls, a decrease in brain osmolytes, and a slight elevation in NAA concentrations. 7T MRI scans showed morphological abnormalities but no changes in the signal intensity of the globus pallidus. Neurocognitive testing revealed attention deficit disorder, language difficulties, and mild intellectual disability. Most of these areas improved after shunt closure.In this paediatric case of type B HE with normal fasting ammonia, neurometabolic profile was compatible with what has been previously shown in chronic liver disease, while also demonstrating an isolated glutamine peak. In addition, neurocognitive function partially improved after shunt closure, arguing strongly for shunt closure in both presymptomatic and symptomatic patients.
慢性肝性脑病(CHE)在先天性门-系统分流(CPSS)和慢性肝病患者中均有报道。慢性肝性脑病在儿童中很难识别,因为没有明确的定义,其表现也千变万化。CHE 与脑容量和代谢物的变化有关,1.5-3T 磁共振成像系统已经证实了这一点。我们使用高磁场质子磁共振波谱(1H MRS,7T)结合核磁共振成像分析了一名 CPSS 患儿的神经代谢特征、脑容量和 T1 驰豫时间,并与年龄匹配的对照组进行了比较。我们还使用改编的神经心理学测试评估了分流管关闭对神经认知症状的影响。7T MRS 显示,与对照组相比,谷氨酰胺显著增加,脑渗透压降低,NAA 浓度略有升高。7T 磁共振成像扫描显示球状苍白球形态异常,但信号强度没有变化。神经认知测试显示,患者存在注意力缺陷障碍、语言障碍和轻度智力障碍。在这个空腹血氨正常的 B 型高血压儿科病例中,神经代谢谱与之前在慢性肝病中显示的情况相符,同时还显示出一个孤立的谷氨酰胺峰。此外,分流管关闭后神经认知功能得到了部分改善,这有力地证明了对无症状和有症状的患者进行分流管关闭是正确的。
{"title":"Neurometabolism and brain morphometry in an adolescent female with an extra‐hepatic congenital portosystemic shunt","authors":"Isaline Chabbey, C. Cudalbu, Eugénie Barras, Sylviane Hanquinet, Bénédicte Maréchal, A. Rougemont, Julie Wacker, Florence Zangas‐Gheri, V. McLin","doi":"10.1002/jpr3.12035","DOIUrl":"https://doi.org/10.1002/jpr3.12035","url":null,"abstract":"Chronic hepatic encephalopathy (CHE) has been reported both in patients with congenital porto‐systemic shunts (CPSS) and chronic liver disease. CHE is difficult to recognize in children as there is no clear definition and its manifestations are highly variable. CHE is associated with variations in brain volumes and metabolites that have already been demonstrated using 1.5‐3T MRI systems. However, the in‐depth study of brain metabolism requires the high spectral resolution of high magnetic fields.We analyzed the neurometabolic profile, brain volumes and T1 relaxation times of a child with a CPSS using high field proton magnetic resonance spectroscopy (1H MRS, 7T) combined with MRI and compared it to an age‐matched control group. We also evaluated the impact of shunt closure on neurocognitive symptoms using adapted neuropsychological tests.7T MRS revealed a significant increase in glutamine compared to controls, a decrease in brain osmolytes, and a slight elevation in NAA concentrations. 7T MRI scans showed morphological abnormalities but no changes in the signal intensity of the globus pallidus. Neurocognitive testing revealed attention deficit disorder, language difficulties, and mild intellectual disability. Most of these areas improved after shunt closure.In this paediatric case of type B HE with normal fasting ammonia, neurometabolic profile was compatible with what has been previously shown in chronic liver disease, while also demonstrating an isolated glutamine peak. In addition, neurocognitive function partially improved after shunt closure, arguing strongly for shunt closure in both presymptomatic and symptomatic patients.","PeriodicalId":17618,"journal":{"name":"JPGN Reports","volume":"17 12","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-12-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139148425","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}
引用次数: 0
Symptomatic hypercalcemia in an infant secondary to excessive consumption of almond milk as a formula alternative 一名婴儿因过量饮用杏仁露作为配方奶替代品而继发症状性高钙血症
Pub Date : 2023-12-28 DOI: 10.1002/jpr3.12028
Whitney C. Gulledge, Brittany M. Gerald, Kathryn M. Sumpter, Nathaniel G. Rogers
A 4‐month‐old previously healthy female presented with persistent nonbloody, nonbilious emesis, decreased urine output, weight loss, fussiness, and lethargy. Serum levels of calcium were increased at 14.1 mg/dL, serum phosphate decreased at 1.6 mg/dL, and serum parathyroid hormone decreased at <4 pg/mL. The patient had been consuming unsweetened almond milk due to inability to find infant formula during a national infant formula shortage. Milk alternatives including almond milk are calorie‐poor, low fat, low protein, and too high in free water and calcium to safely be the primary nutrition source for infants.
一名 4 个月大的健康女婴出现了持续性非血性、非淤血性呕吐、尿量减少、体重下降、烦躁不安和嗜睡等症状。血清钙水平升高至 14.1 mg/dL,血清磷酸盐下降至 1.6 mg/dL,血清甲状旁腺激素下降至 <4 pg/mL。在全国婴儿配方奶粉短缺期间,由于找不到婴儿配方奶粉,患者一直在饮用不加糖的杏仁奶。包括杏仁奶在内的牛奶替代品热量低、脂肪低、蛋白质低,而且游离水和钙含量过高,无法安全地作为婴儿的主要营养来源。
{"title":"Symptomatic hypercalcemia in an infant secondary to excessive consumption of almond milk as a formula alternative","authors":"Whitney C. Gulledge, Brittany M. Gerald, Kathryn M. Sumpter, Nathaniel G. Rogers","doi":"10.1002/jpr3.12028","DOIUrl":"https://doi.org/10.1002/jpr3.12028","url":null,"abstract":"A 4‐month‐old previously healthy female presented with persistent nonbloody, nonbilious emesis, decreased urine output, weight loss, fussiness, and lethargy. Serum levels of calcium were increased at 14.1 mg/dL, serum phosphate decreased at 1.6 mg/dL, and serum parathyroid hormone decreased at <4 pg/mL. The patient had been consuming unsweetened almond milk due to inability to find infant formula during a national infant formula shortage. Milk alternatives including almond milk are calorie‐poor, low fat, low protein, and too high in free water and calcium to safely be the primary nutrition source for infants.","PeriodicalId":17618,"journal":{"name":"JPGN Reports","volume":"24 41","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-12-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139148520","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}
引用次数: 0
Intractable diarrhea in an infant—autoimmune enteropathy: A case report 婴儿自身免疫性肠病的顽固性腹泻:病例报告
Pub Date : 2023-12-27 DOI: 10.1002/jpr3.12038
Shivangi Tetarbe, Kasvi Shah, Ira Shah
Autoimmune enteropathy is a rare cause of chronic intractable diarrhea and is present in <1 in 100,000 infants. We report the case of a 9‐month‐old boy who presented with intractable diarrhea and vomiting. Genetic panel testing revealed a STAT3 heterozygous mutation in exon 6, suggesting infantile‐onset multisystem autoimmune disease‐1. The patient was initially treated with steroids and sulfasalazine. However, on tapering steroids, he had another episode of diarrhea and was subsequently put on baricitinib to which he responded.
自身免疫性肠病是导致慢性顽固性腹泻的罕见病因,婴儿发病率不到十万分之一。我们报告了一例 9 个月大的男婴,他出现了难治性腹泻和呕吐。基因组检测显示,STAT3 第 6 外显子存在杂合突变,这表明该病为婴儿型多系统自身免疫病-1。患者最初接受了类固醇和柳氮磺胺吡啶治疗。然而,在减少类固醇用量后,他再次出现腹泻,随后又服用了巴利替尼,并对该药产生了反应。
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引用次数: 0
Application of an Interactive, Hands-On Nutritional Curriculum for Pediatric Residents 儿科住院医师互动、动手营养课程的应用
Pub Date : 2023-11-01 DOI: 10.1097/pg9.0000000000000384
Cory Wyatt Jones, Andrew A.M. Singer
Currently, there exists a scarcity of suitable nutrition training resources for the primary care physician (PCP) and a paucity of educational materials for pediatric residency programs. Barriers to nutritional education include: a lack of well-defined competencies, a dearth of centralized resources for nutritional education, and a reliance on didactic teaching methodology. Because PCPs often cite a lack of confidence as a primary reason for not providing nutritional counseling, we created an interactive 3-pronged nutritional curriculum for pediatric residents with the aim of increasing their confidence to provide nutritional counseling to patients. This curriculum included an in-person visit to a local supermarket, an online, interactive case during the resident’s continuity clinic, and an interactive lecture. There was a statistically significant change in pediatric residents’ confidence to manage issues of outpatient nutrition management. We find this particularly relevant as increasing physician confidence is key to increasing nutritional counseling in a clinical setting.
目前,初级保健医生(PCP)缺乏适当的营养培训资源,儿科住院医师项目也缺乏教育材料。营养教育的障碍包括:缺乏明确的能力,缺乏集中的营养教育资源,以及依赖说教式的教学方法。由于pcp经常将缺乏信心作为不提供营养咨询的主要原因,我们为儿科住院医师创建了一个互动式的三管齐下的营养课程,旨在提高他们为患者提供营养咨询的信心。该课程包括亲自访问当地超市,在住院医生的连续性诊所进行在线互动案例,以及互动讲座。儿科住院医师对管理门诊营养管理问题的信心有统计学上显著的变化。我们发现这尤其相关,因为增加医生的信心是在临床环境中增加营养咨询的关键。
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引用次数: 0
Patient, Parent, and Provider Perceptions of Barriers to Pediatric Inflammatory Bowel Disease Care 儿童炎症性肠病护理障碍的患者、家长和提供者认知
Pub Date : 2023-11-01 DOI: 10.1097/pg9.0000000000000386
Jennifer L. Dotson, Josh Bricker, Deena J. Chisolm, Laura M. Mackner
Objectives: Children with inflammatory bowel disease (IBD) have a significant life-long burden as a result of disease, impacted by environmental and individual barriers. Successful health system interventions require a comprehensive approach, informed by various stakeholders. The main objective was to identify health system barriers and potential solutions from existing patients, families, and providers via focus groups. Methods: Participants for the focus groups were existing English-speaking patients (ages 9–18) with IBD, their caregiver(s), and providers including multiple professions (eg, physician, nurse, pediatrician, social worker, care coordinator, scheduler, and psychologist). Separate focus groups were led by experienced personnel for parents, children, and providers, using a standardized interview guide. Sessions were recorded, transcribed, and verified. Using content analysis, we systematically classified data through coding and identified themes. Results: Focus groups comprised (a) 3 patient groups (n = 20, 50% female, including 2 younger; mean age = 11.4 ± 1.5 years) and 1 older group (mean age = 15.6 ± 1.3 years), (b) 3 parent groups (n = 24, 83% female), and (c) 2 multidisciplinary provider groups (n = 19). Families shared several common concerns with providers (eg, school, care delay, psychosocial, and financial) but varied on specifics. Some barriers may be addressable through family or staff education, improved communication (eg, care delay/ access, transition), or training (eg, labs and diet), while others may require change at an institutional or policy level (eg, insurance). Conclusions: This qualitative analysis identified several barriers to IBD care, some shared, some unique to patients, parents, and providers, highlighting the importance of obtaining multiple stakeholder perspectives when exploring barriers to care.
目的:炎症性肠病(IBD)儿童由于疾病,受到环境和个体障碍的影响,具有显著的终身负担。成功的卫生系统干预措施需要在各利益攸关方知情的情况下采取综合办法。主要目标是通过焦点小组确定现有患者、家庭和提供者的卫生系统障碍和潜在解决方案。方法:焦点小组的参与者是现有的说英语的IBD患者(9-18岁)、他们的照顾者和包括多种职业的提供者(如医生、护士、儿科医生、社会工作者、护理协调员、调度员和心理学家)。使用标准化的访谈指南,由经验丰富的人员为家长、儿童和提供者领导单独的焦点小组。会议记录,转录和验证。使用内容分析,我们通过编码和确定主题系统地对数据进行分类。结果:焦点组包括(a) 3组患者(n = 20, 50%为女性,其中2例为年轻人;平均年龄= 11.4±1.5岁)和1个老年组(平均年龄= 15.6±1.3岁),(b) 3个父母组(n = 24, 83%为女性),(c) 2个多学科提供者组(n = 19)。家庭与服务提供者有几个共同的担忧(例如,学校、护理延迟、心理社会和经济),但具体情况有所不同。有些障碍可以通过家庭或工作人员教育、改善沟通(例如,护理延迟/获得、过渡)或培训(例如,实验室和饮食)来解决,而其他障碍可能需要在体制或政策层面进行改变(例如,保险)。结论:本定性分析确定了IBD治疗的几个障碍,有些是共同的,有些是患者、父母和提供者独有的,强调了在探索治疗障碍时获得多个利益相关者观点的重要性。
{"title":"Patient, Parent, and Provider Perceptions of Barriers to Pediatric Inflammatory Bowel Disease Care","authors":"Jennifer L. Dotson, Josh Bricker, Deena J. Chisolm, Laura M. Mackner","doi":"10.1097/pg9.0000000000000386","DOIUrl":"https://doi.org/10.1097/pg9.0000000000000386","url":null,"abstract":"Objectives: Children with inflammatory bowel disease (IBD) have a significant life-long burden as a result of disease, impacted by environmental and individual barriers. Successful health system interventions require a comprehensive approach, informed by various stakeholders. The main objective was to identify health system barriers and potential solutions from existing patients, families, and providers via focus groups. Methods: Participants for the focus groups were existing English-speaking patients (ages 9–18) with IBD, their caregiver(s), and providers including multiple professions (eg, physician, nurse, pediatrician, social worker, care coordinator, scheduler, and psychologist). Separate focus groups were led by experienced personnel for parents, children, and providers, using a standardized interview guide. Sessions were recorded, transcribed, and verified. Using content analysis, we systematically classified data through coding and identified themes. Results: Focus groups comprised (a) 3 patient groups (n = 20, 50% female, including 2 younger; mean age = 11.4 ± 1.5 years) and 1 older group (mean age = 15.6 ± 1.3 years), (b) 3 parent groups (n = 24, 83% female), and (c) 2 multidisciplinary provider groups (n = 19). Families shared several common concerns with providers (eg, school, care delay, psychosocial, and financial) but varied on specifics. Some barriers may be addressable through family or staff education, improved communication (eg, care delay/ access, transition), or training (eg, labs and diet), while others may require change at an institutional or policy level (eg, insurance). Conclusions: This qualitative analysis identified several barriers to IBD care, some shared, some unique to patients, parents, and providers, highlighting the importance of obtaining multiple stakeholder perspectives when exploring barriers to care.","PeriodicalId":17618,"journal":{"name":"JPGN Reports","volume":"36 12","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135564280","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}
引用次数: 0
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