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Pediatric Hematologists Report Infrequent Prognosis Discussions in the Routine Care of Children with Sickle Cell Disease
- Journal of Health Care for the Poor and Underserved
- Johns Hopkins University Press
- Volume 31, Number 1, February 2020
- pp. 398-423
- 10.1353/hpu.2020.0030
- Article
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Abstract:
A large proportion of the morbidity and almost all of the mortality of sickle cell disease (SCD) now occurs in adulthood. Children with SCD underuse disease-modifying and curative treatments, in part because of how patients/parents understand SCD morbidity and mortality. Whether practitioners provide prognostic information to families is unknown. We emailed a 31-item survey to 1,149 pediatric hematologist-oncologists and analyzed 96 responses. Most said discussing prognosis would change patient/parent willingness to start hydroxyurea, but fewer actually discuss prognosis when they want to start hydroxyurea (91% vs. 75%, p=.001). Similarly, most said discussing prognosis would change adherence to therapy, but fewer actually discuss prognosis to motivate adherence (78% vs 31%, p<.001). Most (77%) addressed prognosis when the "patient or their parent bring it up." Respondents reporting frequent life expectancy discussions were more likely to report a pathway for such discussions (p=.017). Pediatric hematologists may not conduct prognostic discussions without prompting, although these conversations may be important for shared, informed decision-making.