Non-endoscopic percutaneous gastrostomy placement in children with recessive dystrophic epidermolysis bullosa
Pediatrics; Surgery; anesthesia; epidermolysis bullosa; management; dilation; esophageal strictures; "Push"; chile; gastrostomy; iind international-symposium; non-endoscopic percutaneous gastrostomy; nutrition; santiago; feeding difficulties; surgical intervention; non-endoscopic percutaneous gastrostomy; gastrostomy tube placement
Recessive dystrophic epidermolysis bullosa (RDEB) is associated with high nutritional demands, esophageal strictures and dysphagia. About one quarter of the patients require gastrostomy tube placement to maintain adequate nutritional status. To minimize trauma to the skin and pharyngoesophageal mucosa caused by commonly used gastrostomy tube insertion techniques, we used a non-endoscopic, percutaneous, image-guided approach. This approach combines the use of ultrasound for mapping of the liver and spleen, water-soluble contrast enema to visualize the colon, and gastric insufflation to define the stomach. The gastrostomy tube is replaced by a low-profile button gastrostomy tube 10-12 weeks postoperatively. The five female patients reported in this series ranged in age from 6 to 9 years. They all tolerated the procedure well and no perioperative complications were encountered. All were able to tolerate feedings on postoperative day 1 and all underwent successful replacement of gastrostomy tubes by low-profile button tubes. Our experience suggests that a non-endoscopic, image-guided approach to gastrostomy tube placement offers a safe, effective, and minimally traumatic alternative to more commonly used approaches. It minimizes the risk of procedure-related morbidity and leads to overall improvement in the quality of life. As such, we strongly recommend that it be included in the treatment armamentarium for patients with epidermolysis bullosa and nutritional failure.
Stehr W; Farrell M K; Lucky A W; Johnson N D; Racadio J M; Azizkhan R G
Pediatric Surgery International
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00383-007-2100-x" target="_blank" rel="noreferrer noopener">10.1007/s00383-007-2100-x</a>
Pediatric palliative care (PPC) access in Chile: Private practice health insurance law implementation
Chile;health Insurance;palliative Therapy;private Practice; Analgesia; Central Nervous System Tumor; Child; Clinical Article; Counseling; Diagnosis; Doctor Patient Relation; Female; Home Visit; Human; Leukemia; Nurse; Outpatient; Overall Survival; Psychologist; School Child; Telephone
Background: There are 600 new pediatric cancer cases in Chile in a year, with an overall survival of 70% and there are two systems that guarantee the access for patients to health providers: The public system, or national health fund (FONASA), and the private one, supported by insurance health institutions (ISAPRES), both financed by employees or contributors. Today in Chile the distribution of the population between both systems is 75% and 25% respectively. In 2004, in Chile, was enacted the law number 19.966 of explicit health guarantees (GES), that forces health systems to provide contributors the access, along with many other pathologies, to palliative care and pain relief for oncologic patients, despite the age. PPC is well developed and provided in the public system, but no precedents have being settled in the private area. Objectives: To show the results of the first PPC team focused on the private practice in Chile. Design/Method: According to data published by Chilean ministry of health pain relief and palliative care program, extrapolating the patient distribution in the private practice area, and assuming a similar overall survival, the estimated number of patients that could be beneficiated by this program should be between 20 and 25 per year. We count on an interdisciplinary team (nurses, kinesiologist, psychologist and physicians) able to offer care according to each patient needs: Home visit, outpatient consultation, telephone assistance, treating teams counseling, supplies provision, etc. Demographics and charateristics of our group are presented. Results: In the first 13 months of functioning, 21 cases have been evaluated (including 2 non oncologic patients) and 14 of them have been admitted to the program. Aveerage age of 8.6 years old. 8 female. Time fromadmission to program of 5 months (range 0.2-20) central nervous system tumors and relapsed leukemias are the main diagnoses. Conclusion: Chilean law guarantees a benefit to patients but their access is not properly assured. The mission of our team is to provide integral care to this patients and to become a reference team for the health insurance institions and their affiliated.
Rojas N; Rosas A; Araya E; Varela J; Lopez P; Gallastegui A
Pediatric Blood And Cancer
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.26591" target="_blank" rel="noreferrer">10.1002/pbc.26591</a>