Continuing a search for a diagnosis: the impact of adolescence and family dynamics.

ABSTRACT: The "diagnostic odyssey" describes the process those with undiagnosed conditions undergo to identify a diagnosis. Throughout this process, families of children with undiagnosed conditions have multiple opportunities to decide whether to continue or stop their search for a diagnosis and accept the lack of a diagnostic label. Previous studies identified factors motivating a family to begin searching, but there is limited information about the decision-making process in a prolonged search and how the affected child impacts a family's decision. This study aimed to understand how families of children with undiagnosed diseases decide whether to continue to pursue a diagnosis after standard clinical testing has failed. Parents who applied to the Undiagnosed Disease Network (UDN) at the National I

SUBMITTER: Miller IM 

PROVIDER: S-EPMC9830697 | biostudies-literature | 2023 Jan

REPOSITORIES: biostudies-literature