Communicating Prognosis in Sickle Cell Disease: A Qualitative Study of Adolescents with Sickle Cell Disease, Their Parents and Providers

Overview

Journal Ann Pediatr Child Health

Publisher JSciMed Central

Date 2024 Dec 23

PMID 39712473

Authors

Lydia H Pecker

Michael Roth

Sari Landman

Leslie Cunningham

Ellen Johnson Silver

Deepa Manwani

Affiliations

Soon will be listed here.

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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