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Enrollment of patients in sickle cell intervention trials has been challenging due to difficulty in obtaining consent from a legal guardian and lack of collaboration between emergency medicine and hematology. We utilized education and preconsent in a pediatric multisite sickle cell intervention trial to overcome these challenges. Overall, 48 patients were enrolled after being preconsented. Variable Institutional Review Board policies related to preconsent validity and its allowable duration decreased the advantages of preconsent at some sites. The utility of preconsent for future intervention trials largely depends on local Institutional Review Board policies. Preeducation may also benefit the consent process, regardless of site differences.

Background Rehospitalization rates are increasingly used as quality indicators for a variety of illnesses, including sickle cell disease. While one small, single center study suggested outpatient follow-up with a pediatric hematologist was associated with fewer rehospitalizations, no study has examined the effect of post-discharge outpatient follow-up on rehospitalization rates across ages and beyond a single site. Procedure This is a retrospective cohort study using Wisconsin Medicaid claims data for hospitalized children and adults with sickle cell disease from 2003 to 2007. The primary outcomes were rehospitalization at both 14 and 30 days after an index hospitalization for sickle cell pain crisis (ICD-9-CM codes 28242, 28262, 28264, 28269). Univariate survival analyses were performed based on outpatient visit, severe disease, asthma, and age. The Cox proportional hazards model was used for multivariate analyses yielding hazard ratios for the association between outpatient visits and subsequent rehospitalization rates. Results Of the 408 patients included, 42 (10.2%) patients were rehospitalized within 14 days and 70 (17.1%) were rehospitalized within 30 days. Multivariate analysis showed that an outpatient visit is associated with lower rates of both 30-day rehospitalization (Hazard Ratio (HR) 0.442; 95%CI: 0.330–0.593) and 14-day rehospitalization (HR 0.226; 95%CI: 0.124–0.412), with the majority of 30-day rehospitalizations occurring within 14 days. Conclusions For sickle cell disease, post-discharge planning should emphasize early follow-up to prevent subsequent hospitalization and improve care quality. Pediatr Blood Cancer 2012; 58: 406–409. © 2011 Wiley Periodicals, Inc.

A previous study reported increased dissatisfaction with hospital care for children with sickle cell disease (SCD); however, its small size excluded determining whether race and chronic disease explained the difference.At hospital discharge, parents of children with SCD completed a survey assessing satisfaction with their child's hospital care. Results were compared to three years of satisfaction surveys for children with asthma or admitted to a general pediatrician's service collected as quality improvement for the hospital. The primary outcome was parent reported dissatisfaction with care. A chi-square was used to compare dissatisfaction between SCD and each comparison group.Parents of 639 children were included, 34 children with SCD, 124 with asthma, and 481 general pediatric patients. Parents of children with SCD were more often dissatisfied with their child's care compared to children with asthma (32.4% vs. 16.9%, P0.05) and general pediatric patients (32.4% vs. 14.6%, P0.05). Among all children, dissatisfaction was higher in families with minority children (21.1% vs. 12.6%); this difference did not exist among children with asthma. Among African-American children, a higher proportion of parents of children with SCD believed their child was treated differently because of race than children with asthma (45.5% vs. 2.8%, P0.01) or general pediatric patients (45.5% vs. 8.3%, P0.01).Parents of children with SCD report increased dissatisfaction with care. While dissatisfaction was higher in minority families, the high rate of parental concern about race as a reason for families of children with SCD is not seen in African-American families of children with asthma.