Care of Children With Sickle Cell Disease in the Emergency Department: Parent and Provider Perspectives Inform Quality Improvement Efforts

1Duke University, Durham, NC, USA.
Journal of Pediatric Oncology Nursing (Impact Factor: 0.9). 07/2013; 30(4). DOI: 10.1177/1043454213493509
Source: PubMed


Children with sickle cell disease (SCD) present to the emergency department (ED) with complex medical and behavioral health needs. Little research has been conducted to understand elements necessary to provide a comprehensive approach. We conducted 9 focus groups and 2 individual interviews with ED nurses, ED physicians, parents, 1 SCD nurse practitioner, and 1 SCD hematologist in 6 states. The primary aim of the study was to assess the appropriateness of the Emergency Department Sickle Cell Assessment of Needs and Strengths for pediatric patients. Participants were asked to discuss important aspects of ED management. Transcripts were analyzed according to 5 key decision points, and common themes were identified for each decision. Decisions included triage, analgesic management, diagnostic evaluation, disposition, and high risk evaluation and referrals needed at discharge. Participants identified critical areas that can be used to organize and improve the assessment, management, and disposition/referral decisions in order to provide better care to children with SCD in the ED. Parent input was critical for each decision.

2 Reads
  • [Show abstract] [Hide abstract]
    ABSTRACT: The number of individuals with sickle cell disease (SCD) in the U.S. is unknown. Determination of burden of disease, healthcare issues, and policies is best served by representative estimations of the SCD population. To update SCD population estimates by using recent U.S. Census and birth-cohort SCD prevalence for at-risk populations as available through the centralized reporting of universal newborn screening for hemoglobinopathies, with an effort to demonstrate the potential effect of early mortality. National and state SCD populations were estimated based on the 2008 U.S. Census, using total, African-American, and Hispanic birth-cohort disease prevalence derived from the National Newborn Screening Information System. Estimates were corrected for early mortality for sickle cell anemia using data from the CDC's Compressed Mortality Report and published patient-cohort survival information. National SCD population estimates ranged from 104,000 to 138,900, based on birth-cohort disease prevalence, but from 72,000 to 98,000 when corrected for early mortality. Several limitations were noted in the available data, particularly for SCD mortality in adults. The number of individuals with SCD in the U.S. may approach 100,000, even when accounting for the effect of early mortality on estimations. A paucity of high-quality data limits appropriate estimation. State-to-state variability may preclude application of state-specific information to other states or to the nation as a whole. Standardized collection and centralized reporting, a surveillance system, will be necessary to assess the size and composition of the U.S. SCD population.
    American journal of preventive medicine 04/2010; 38(4 Suppl):S512-21. DOI:10.1016/j.amepre.2009.12.022 · 4.53 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Behavioral and emotional problems in children with sickle cell disease (SCD) may be related to disease factors, or to socio-demographic factors. The aim of this study was to investigate the prevalence of behavioral and emotional problems in children with SCD living in a Western European country, compared to healthy siblings (who were comparable in age, gender, ethnicity, and socio-economic status-SES), and to a Dutch norm population. The Child Behavior Checklist (CBCL), Teacher Report Form (TRF) and Disruptive Behavior Disorders rating scale (DBD) were distributed among caregivers and teachers of 119 children with SCD aged 6-18 years and among caregivers and teachers of 38 healthy siblings. Questionnaires were returned by caregivers and/or teachers of 106 children with SCD and 37 healthy siblings. According to caregivers and teachers, children with SCD had more severe internalizing problems than healthy siblings and the norm population. According to teachers, subgroups of both children with SCD and healthy siblings had more severe externalizing problems than the norm population. Children with SCD had more difficulties than healthy siblings in terms of school functioning, showed less competent social behavior and tended to have more attention deficits. Children with SCD are at increased risk of developing internalizing problems as a result of their disease. Subgroups of children with SCD are at increased risk of developing severe externalizing problems, which may either be related to socio-demographic factors, or to disease factors, such as neurocognitive deficits associated with cerebral infarction.
    Pediatric Blood & Cancer 12/2009; 53(7):1277-83. DOI:10.1002/pbc.22257 · 2.39 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: The purpose of this study was to describe the pain experience of children with sickle cell disease who were hospitalized for vaso-occlusive painful episodes. The pain experience, and signs and symptoms prior to admission and during hospitalization, are presented in the context of whether there is evidence to support the existence of phases to a vaso-occlusive painful episode. Children were interviewed about the onset of the painful episode and were asked to describe their pain from the day of admission to the day of discharge from the hospital. They were also observed for the absence or presence of signs and symptoms associated with the painful vaso-occlusive episode. Findings from this study provide some evidence to support previous observations related to changes during the evolution of painful episodes that may be occurring in phases (e.g., evolving, inflammatory, resolving), as previously described in adults and children. These phases had different names, although the concepts were similar.
    Journal of Pain and Symptom Management 05/2005; 29(4):392-400. DOI:10.1016/j.jpainsymman.2004.07.006 · 2.80 Impact Factor
Show more