{"title":"初级保健提供者的大疱性表皮松解症:一个实用的回顾","authors":"Kennedy Sparling BS, Judith O'Haver PhD, RN, CPNP-PC, Muayad Shahin BA, Amanda Damon APRN, Nichole Halliburton MSN, APRN, CNP, Kellie Badger BS, RN, Mariam Iqneibi MD, Beth Moeves APRN, Harper N. Price MD, Emily S. Gorell DO, MS","doi":"10.1002/jgf2.70014","DOIUrl":null,"url":null,"abstract":"<p>Epidermolysis bullosa (EB) is a group of genetic skin diseases, which manifest as fragile skin and blistering in addition to many extracutaneous conditions. Pediatricians and primary care providers play an integral role in managing these patients with multifaceted care needs. There are many resources to navigate treating the various manifestations of EB and to assist with the partnership between pediatricians, dermatologists, and other specialists. There are also newly approved therapies for treating some forms of EB. As patients may only attend the multidisciplinary clinic for the management of their condition at designated intervals, the primary care provider becomes the first point of contact in many acute or healthcare maintenance visits. Using the resources and tips discussed herein, the pediatrician can work with the rest of the medical team to best optimize the clinical outcomes of patients with EB.</p>","PeriodicalId":51861,"journal":{"name":"Journal of General and Family Medicine","volume":"26 4","pages":"279-291"},"PeriodicalIF":2.3000,"publicationDate":"2025-04-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jgf2.70014","citationCount":"0","resultStr":"{\"title\":\"Epidermolysis bullosa for primary care providers: A practical review\",\"authors\":\"Kennedy Sparling BS, Judith O'Haver PhD, RN, CPNP-PC, Muayad Shahin BA, Amanda Damon APRN, Nichole Halliburton MSN, APRN, CNP, Kellie Badger BS, RN, Mariam Iqneibi MD, Beth Moeves APRN, Harper N. Price MD, Emily S. Gorell DO, MS\",\"doi\":\"10.1002/jgf2.70014\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p>Epidermolysis bullosa (EB) is a group of genetic skin diseases, which manifest as fragile skin and blistering in addition to many extracutaneous conditions. Pediatricians and primary care providers play an integral role in managing these patients with multifaceted care needs. There are many resources to navigate treating the various manifestations of EB and to assist with the partnership between pediatricians, dermatologists, and other specialists. There are also newly approved therapies for treating some forms of EB. As patients may only attend the multidisciplinary clinic for the management of their condition at designated intervals, the primary care provider becomes the first point of contact in many acute or healthcare maintenance visits. Using the resources and tips discussed herein, the pediatrician can work with the rest of the medical team to best optimize the clinical outcomes of patients with EB.</p>\",\"PeriodicalId\":51861,\"journal\":{\"name\":\"Journal of General and Family Medicine\",\"volume\":\"26 4\",\"pages\":\"279-291\"},\"PeriodicalIF\":2.3000,\"publicationDate\":\"2025-04-16\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jgf2.70014\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of General and Family Medicine\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1002/jgf2.70014\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"MEDICINE, GENERAL & INTERNAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of General and Family Medicine","FirstCategoryId":"1085","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/jgf2.70014","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"MEDICINE, GENERAL & INTERNAL","Score":null,"Total":0}
Epidermolysis bullosa for primary care providers: A practical review
Epidermolysis bullosa (EB) is a group of genetic skin diseases, which manifest as fragile skin and blistering in addition to many extracutaneous conditions. Pediatricians and primary care providers play an integral role in managing these patients with multifaceted care needs. There are many resources to navigate treating the various manifestations of EB and to assist with the partnership between pediatricians, dermatologists, and other specialists. There are also newly approved therapies for treating some forms of EB. As patients may only attend the multidisciplinary clinic for the management of their condition at designated intervals, the primary care provider becomes the first point of contact in many acute or healthcare maintenance visits. Using the resources and tips discussed herein, the pediatrician can work with the rest of the medical team to best optimize the clinical outcomes of patients with EB.