Lydia H Pecker, Michael Roth, Sari Landman, Leslie Cunningham, Ellen Johnson Silver, Deepa Manwani
{"title":"Communicating Prognosis in Sickle Cell Disease: A Qualitative Study of Adolescents with Sickle Cell Disease, Their Parents and Providers.","authors":"Lydia H Pecker, Michael Roth, Sari Landman, Leslie Cunningham, Ellen Johnson Silver, Deepa Manwani","doi":"","DOIUrl":null,"url":null,"abstract":"<p><p>Adolescents with sickle cell disease (SCD) and their parents are more optimistic about their future than their physicians. This may affect treatment preferences and therapy adherence. Disease specific recommendations for discussing disease course of children with SCD do not exist. To begin to address this gap, we held focus groups for adolescents with SCD 14-21 years old (n=6), parents of adolescents with SCD (n=4) and with pediatric (n=3) and adult (n=2) hematologists. SCD prognosis is complicated due to the uncertain disease course. Fear and worry are associated with discussing the future. Parents disagree with adolescents and hematologists about the best approach to discussing prognosis and oppose prognosticating that includes life expectancy. Guidelines to improve communication between physicians and families are needed.</p>","PeriodicalId":90789,"journal":{"name":"Annals of pediatrics & child health","volume":"3 1","pages":""},"PeriodicalIF":0.0000,"publicationDate":"2015-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11661846/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Annals of pediatrics & child health","FirstCategoryId":"1085","ListUrlMain":"","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2015/1/5 0:00:00","PubModel":"Epub","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0
Abstract
Adolescents with sickle cell disease (SCD) and their parents are more optimistic about their future than their physicians. This may affect treatment preferences and therapy adherence. Disease specific recommendations for discussing disease course of children with SCD do not exist. To begin to address this gap, we held focus groups for adolescents with SCD 14-21 years old (n=6), parents of adolescents with SCD (n=4) and with pediatric (n=3) and adult (n=2) hematologists. SCD prognosis is complicated due to the uncertain disease course. Fear and worry are associated with discussing the future. Parents disagree with adolescents and hematologists about the best approach to discussing prognosis and oppose prognosticating that includes life expectancy. Guidelines to improve communication between physicians and families are needed.
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