Pediatric hematologists report infrequent prognosis discussions in the routine care of children with sickle cell disease

Lydia H. Pecker, Ellen Johnson Silver, Michael E. Roth, Deepa Manwani

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)398-423
Number of pages26
JournalJournal of health care for the poor and underserved
Volume31
Issue number1
DOIs
StatePublished - Feb 2020

Keywords

  • Life expectancy
  • Prognosis
  • Sickle cell anemia
  • Sickle cell disease

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Fingerprint Dive into the research topics of 'Pediatric hematologists report infrequent prognosis discussions in the routine care of children with sickle cell disease'. Together they form a unique fingerprint.

  • Cite this