Pediatric Hematologists Report Infrequent Prognosis Discussions in the Routine Care of Children with Sickle Cell Disease

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 provid...

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Bibliographic Details
Published in:Journal of health care for the poor and underserved 2020-02, Vol.31 (1), p.398-423
Main Authors: Pecker, Lydia H, Silver, Ellen Johnson, Roth, Michael, Manwani, Deepa
Format: Article
Language:English
Subjects:
Adolescent
Adults
African Americans
Anemia, Sickle Cell - drug therapy
Antisickling Agents - therapeutic use
Caregivers
Child
Children
Chronic illnesses
Decision making
Disease Progression
Families & family life
Female
Health Care Surveys
Hematology
Hemoglobin
Humans
Hydroxyurea
Hydroxyurea - therapeutic use
Life Expectancy
Life span
Male
Medical prognosis
Medication Adherence
Morbidity
Mortality
Oncologists
Parents
Parents & parenting
Pediatrics
Physician-Patient Relations
Physicians
Professional-Family Relations
Prognosis
Quality of life
Sickle cell disease
Stem cells
Stroke
Teenagers
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Summary: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
ISSN:1049-2089
1548-6869
1548-6869
DOI:10.1353/hpu.2020.0030