Pecker Lydia H, Roth Michael, Landman Sari, Cunningham Leslie, Silver Ellen Johnson, Manwani Deepa
Department of Pediatrics, Children's Hospital at Montefiore, Albert Einstein College of Medicine, USA.
Division of Pediatric Hematology and Oncology, Children's Hospital at Montefiore, Albert Einstein College of Medicine, USA.
Ann Pediatr Child Health. 2015;3(1). Epub 2015 Jan 5.
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.
患有镰状细胞病（SCD）的青少年及其父母对未来比他们的医生更乐观。这可能会影响治疗偏好和治疗依从性。目前不存在针对讨论SCD患儿疾病进程的特定疾病建议。为了开始填补这一空白，我们为14至21岁的SCD青少年（n = 6）、SCD青少年的父母（n = 4）以及儿科血液科医生（n = 3）和成人血液科医生（n = 2）举办了焦点小组。由于疾病进程不确定，SCD的预后很复杂。恐惧和担忧与讨论未来有关。父母在讨论预后的最佳方法上与青少年和血液科医生存在分歧，并反对包括预期寿命在内的预后预测。需要改善医生与家庭之间沟通的指南。
