Mortality of New York children with sickle cell disease identified through newborn screening.

PURPOSE: Long-term follow-up of newborn screening for conditions such as sickle cell disease can be conducted using linkages to population-based data. We sought to estimate childhood sickle cell disease mortality and risk factors among a statewide birth cohort with sickle cell disease identified through newborn screening. METHODS: Children with sickle cell disease identified by newborn screening and born to New York residents in 2000-2008 were matched to birth and death certificates. Mortality rates were calculated (using numbers of deaths and observed person-years at risk) and compared with mortality rates for all New York children by maternal race/ethnicity. Stratified analyses were conducted to examine associations between selected factors and mortality. RESULTS: Among 1,911 infants with sickle cell disease matched to birth certificates, 21 deaths were identified. All-cause mortality following diagnosis was 3.8 per 1,000 person-years in the first 2 years of life and 1.0 per 1,000 person-years at ages 2-9 years. The mortality rate was significantly lower among children of foreign-born mothers and was significantly higher among preterm infants with low birth weight. The mortality rates were not significantly higher for infants after 28 days with sickle cell disease than for all New York births, but they were 2.7-8.4 times higher for children 1 through 9 years old with homozygous sickle cell disease than for those of all non-Hispanic black or Hispanic children born to New York residents. CONCLUSION: Estimated mortality risk in children with homozygous sickle cell disease remains elevated even after adjustment for maternal race/ethnicity. These results provide evidence regarding the current burden of child mortality among children with sickle cell disease despite newborn screening.Genet Med 17 6, 452-459.

Association between Hospital Volume and Within-Hospital Intensive Care Unit Transfer for Sickle Cell Disease in Children's Hospitals.

OBJECTIVE: To assess the relationship between hospital volume and intensive care unit (ICU) transfer among hospitalized children with sickle cell disease (SCD). STUDY DESIGN: We conducted a retrospective cohort study of 83,477 SCD-related hospitalizations at children's hospitals (2009-2012) using the Pediatric Health Information System database. Hospital-level all-cause and SCD-specific volumes were dichotomized (low vs high). Outcomes were within-hospital ICU transfer (primary) and length of stay (LOS) total (secondary). Multivariable logistic/linear regressions assessed the association of hospital volumes with ICU transfer and LOS. RESULTS: Of 83,477 eligible hospitalizations, 1741 (2.1%) involving 1432 unique children were complicated by ICU transfer. High SCD-specific volume (OR 0.77, 95% CI 0.64-0.91) was associated with lower odds of ICU transfer while high all-cause hospital volume was not (OR 0.87, 95% CI 0.73-1.04). A statistically significant interaction was found between all-cause and SCD-specific volumes. When results were stratified according to all-cause volume, high SCD-specific volume was associated with lower odds of ICU transfer at low all-cause volume (OR 0.46, 95% CI 0.38-0.55). High hospital volumes, both all-cause (OR 0.94, 95% CI 0.92-0.97) and SCD-specific (OR 0.86, 95% CI 0.84-0.88), were associated with shorter LOS. CONCLUSIONS: Children's hospitals vary substantially in their transfer of children with SCD to the ICU according to hospital volumes. Understanding the practices used by different institutions may help explain the variability in ICU transfer among hospitals caring for children with SCD.

Pediatric hematology providers on referral for transplant evaluation for sickle cell disease: a regional perspective.

Hematology referral for evaluation is a key step for hematopoietic stem cell transplantation for sickle cell disease (SCD). Pediatric SCD providers in the US Northeast (New York-Mid-Atlantic and New England regions) were surveyed anonymously for perspectives and practices regarding transplant referral and compared by whether they practiced at SCD transplant centers. Data were analyzed using the Fisher exact test, χ test, and logistic regression. Half of the respondents practiced primarily at transplant sites. Most (79%) were enthusiastic about transplant for SCD and 78% had recently referred ≥1 child for evaluation. Overall, 77% limited referral to certain sickle hemoglobinopathies and 44% preferred referral for ß-thalassemia to SCD. Indications selected for referral resembled current transplant criteria, plus family request or poor response to therapy. Referral for children on chronic transfusions predicted enthusiasm and prior referral. Many (66%) referred children with multiple SCD complications, even without matched sibling donors, 37% with sibling donors despite limited disease. Practitioners at transplant centers more commonly accepted event-free survival rates of ≤90% (P=0.002). Northeastern providers expressed varying enthusiasm for referral for evaluation based on eligibility, donor availability, and acceptable risk, with modestly more interest from practitioners at transplant centers. Differing provider perspectives may affect patient referral for transplant consideration.

Material Hardship, Protective Factors, Children's Special Health Care Needs, and the Health of Mothers and Fathers.

BACKGROUND: Parents of children with special health care needs (CSHCN) are at risk of poorer health outcomes. Material hardships also pose significant health risks to parents. Little is known about how protective factors may mitigate these risks and if effects are similar between mothers and fathers. METHODS: This was a cross-sectional survey study conducted using the US 2018/2019 National Survey of Children's Health, including parents of children 0 to 17 with income <200% of the federal poverty level. Separately, for parents of children with and without special health care needs (N-CSHCN), weighted logistic regression measured associations between material hardship, protective factors (family resilience, neighborhood cohesion, and receipt of family-centered care), and 2 outcomes: mental and physical health of mothers and fathers. Interactions were assessed between special health care needs status, material hardship, and protective factors. RESULTS: Sample consisted of parents of 16,777 children; 4440 were parents of CSHCN. Most outcomes showed similar associations for both mothers and fathers of CSHCN and N-CSHCN: material hardship was associated with poorer health outcomes, and family resilience and neighborhood cohesion associated with better parental health outcomes. Family-centered care was associated with better health of mothers but not fathers. Interaction testing showed that the protective effects of family resilience were lower among fathers of CSHCN experiencing material hardship. CONCLUSIONS: Family resilience and neighborhood cohesion are associated with better health outcomes for all parents, though these effects may vary by experience of special health care needs, parent gender, and material hardship.

Trends in blood transfusion among hospitalized children with sickle cell disease.

BACKGROUND: Blood transfusions represent a major therapeutic option in acute management of sickle cell disease (SCD). Few data exist documenting trends in transfusion among children with SCD, particularly during hospitalization. PROCEDURE: This was an analysis of cross-sectional data of hospital discharges within the Kid's Inpatient Database (years 1997, 2000, 2003, 2006, 2009). Hospitalizations for children (0-18 years) with a primary or secondary SCD-related diagnosis were examined. The primary outcome was blood transfusion. Trends in transfusion were assessed using weighted multivariate logistic regression in a merged dataset with year as the primary independent variable. Co-variables consisted of child and hospital characteristics. Multivariate logistic regression was conducted for 2009 data to assess child and hospital-level factors associated with transfusion. RESULTS: From 1997 to 2009, the percentage of SCD-related hospitalizations with transfusion increased from 14.2% to 28.8% (P < 0.0001). Among all SCD-related hospitalizations, the odds of transfusion increased over 20% for each successive study interval. Hospitalizations with vaso-occlusive pain crisis (OR 1.35, 95% CI 1.27-1.43) or acute chest syndrome/pneumonia (OR 1.24, 95% CI 1.13-1.35) as the primary diagnoses had the highest odds of transfusion for each consecutive study interval. Older age and male gender were associated with higher odds of transfusion. CONCLUSIONS: Blood transfusion is increasing over time among hospitalized children with SCD. Further study is warranted to identify indications contributing to the rise in transfusions and if transfusions in the inpatient setting have been used appropriately. Future studies should also assess the impact of rising trends on morbidity, mortality, and other health-related outcomes.

Parental and other factors associated with hydroxyurea use for pediatric sickle cell disease.

BACKGROUND: Hydroxyurea (HU) is highly effective treatment for sickle cell disease (SCD). While pediatric use of HU is accepted clinical practice, barriers to use may impede its potential benefit. PROCEDURE: A survey of parents of children ages 5-17 years with SCD was performed across five institutions to assess factors associated with HU use. RESULTS: Of the 173 parent responses, 65 (38%) had children currently taking HU. Among parents of children not taking HU, the most commonly cited reasons were that their hematology provider had not offered it, their child was not sufficiently symptomatic and concerns about potential side effects. Even parents of HU users reported widespread concern about effectiveness, long-term safety, and off-label use. In bivariate analyses, children's ages, parental demographics such as education level, or travel time to their hematology provider were not correlated with HU use. Bivariate analysis and multivariate logistic regression revealed three significant factors associated with current HU use: better parental knowledge about its major therapeutic effects (P < 0.001), sickle genotype (P = 0.005), and institution of clinical care (P = 0.04). CONCLUSIONS: Pervasive concerns about HU safety exist, even among parents of current users. Varying knowledge among parents appears to be independent of their demographics, and is associated with HU use. Inter-institutional variability in parental knowledge and drug uptake highlights potentially potent site-specific influences on likelihood of HU use. Overall, these survey data underscore the need for strategies to bolster parental understanding about benefits of HU and address concerns about its safety.

Family, Neighborhood and Parent Resilience Are Inversely Associated With Reported Depression in Adolescents Exposed to ACEs.

OBJECTIVE: To examine the association of 1) extrinsic resilience factors and 2) adverse childhood experiences (ACEs) with a caregiver reported diagnosis of depression in a nationally representative sample of adolescents. METHODS: A cross sectional analysis of the 2016-2017 National Survey of Children's Health, restricted to adolescents 12 to 17 years old was conducted. The dependent variable was caregiver reported depression: no current diagnosis vs. current diagnosis of depression. Independent variables were reported ACEs dichotomized as lower (0-3) or higher (4 or more), and specific resilience factors: family resilience, neighborhood cohesion and caregiver emotional support. Resilience factors were analyzed as a composite score dichotomized as lower (0-3) or higher (4 or more) and individually. Purposeful selection multivariable logistic regression model building was used to estimate the associations between reported diagnosis of depression, ACEs and resilience factors adjusting for demographic covariates. RESULTS: Study sample consisted of 29,617 (weighted N = 24,834,232) adolescents, 6% with current reported diagnosis of depression, 8% with higher ACEs and 91% with higher resilience. Family resilience, neighborhood cohesion and caregiver emotional supports were each independently associated with lower odds of reported diagnosis of depression. However, with all resilience factors in the model, only family resilience and neighborhood cohesion (specifically school safety) remained significantly associated with lower odds of reported diagnosis of depression. CONCLUSION(S): In this nationally representative sample, family resilience and neighborhood cohesion were associated with lower odds of a reported diagnosis of depression even with confounding ACEs exposure. These factors may be important targets for future intervention.

Shorter hospitalization trends among children with sickle cell disease.

BACKGROUND: Vaso-occlusive crises (VOC) contribute to frequent hospitalizations among children with sickle cell disease (SCD). The objective of this study was to determine whether length of stay (LOS) has decreased for VOC hospitalizations between 1997 and 2009. PROCEDURE: We analyzed pediatric discharges (aged 0-18) with a primary or secondary diagnosis of SCD with crisis from the Kid's Inpatient Database (years 1997, 2003, and 2009), a nationally representative sample of pediatric hospital discharges. We conducted bivariate and multivariate, sample-weighted linear regression analyses to determine associations between independent variables (patient demographics, hospital characteristics, co-diagnoses, and procedures) and LOS. RESULTS: Both the number (22,661-21,741) and proportion of VOC hospitalizations (0.34-0.29%) among all pediatric hospitalizations marginally decreased between 1997 and 2009 (P < 0.01). Mean LOS decreased from 4.59 to 4.21 days (P < 0.01). For all study years, older age was the only socio-demographic variable associated with longer LOS, controlling for other factors. Between 1997 and 2009, LOS decreased for all age categories, with the largest statistically significant reduction occurring among adolescents (5.69-4.76 days). CONCLUSIONS: Nationally representative hospital data indicate modest but meaningful reductions in LOS for children with VOC over a 12-year period. Adolescents who typically have the greatest disease severity showed the largest reduction in LOS. However, adolescents continue to account for a large proportion of inpatient stays for VOC. These findings illustrate that the adolescent period is a critical time in the lifespan for targeted intervention.

Pediatric surgical site infection (SSI) following ambulatory surgery: Incidence, risk factors and patient outcomes.

BACKGROUND: Inpatient surgical site infections (SSIs) cause morbidity in children. The SSI rate among pediatric ambulatory surgery patients is less clear. To fill this gap, we conducted a multiple-institution, retrospective epidemiologic study to identify incidence, risk factors, and outcomes. METHODS: We identified patients aged <22 years with ambulatory visits between October 2010 and September 2015 via electronic queries at 3 medical centers. We performed sample chart reviews to confirm ambulatory surgery and adjudicate SSIs. Weighted Poisson incidence rates were calculated. Separately, we used case-control methodology using multivariate backward logistical regression to assess risk-factor association with SSI. RESULTS: In total, 65,056 patients were identified by queries, and we performed complete chart reviews for 13,795 patients; we identified 45 SSIs following ambulatory surgery. The weighted SSI incidence following pediatric ambulatory surgery was 2.00 SSI per 1,000 ambulatory surgeries (95% confidence interval [CI], 1.37-3.00). Integumentary surgeries had the highest weighted SSI incidence, 3.24 per 1,000 ambulatory surgeries (95% CI, 0.32-12). The following variables carried significantly increased odds of infection: clean contaminated or contaminated wound class compared to clean (odds ratio [OR], 9.8; 95% CI, 2.0-48), other insurance type compared to private (OR, 4.0; 95% CI, 1.6-9.8), and surgery on weekend day compared to weekday (OR, 30; 95% CI, 2.9-315). Of the 45 instances of SSI following pediatric ambulatory surgery, 40% of patients were admitted to the hospital and 36% required a new operative procedure or bedside incision and drainage. CONCLUSIONS: Our findings suggest that morbidity is associated with SSI following ambulatory surgery in children, and we also identified possible targets for intervention.

Pediatric Ambulatory Central Line-Associated Bloodstream Infections.

BACKGROUND: Inpatient pediatric central line-associated bloodstream infections (CLABSIs) cause morbidity and increased health care use. Minimal information exists for ambulatory CLABSIs despite ambulatory central line (CL) use in children. In this study, we identified ambulatory pediatric CLABSI incidence density, risk factors, and outcomes. METHODS: Retrospective cohort with nested case-control study at 5 sites from 2010 through 2015. Electronic queries were used to identify potential cases on the basis of administrative and laboratory data. Chart review was used to confirm ambulatory CL use and adjudicated CLABSIs. Bivariate followed by multivariable backward logistic regression was used to identify ambulatory CLABSI risk factors. RESULTS: Queries identified 4600 potentially at-risk children; 1658 (36%) had ambulatory CLs. In total, 247 (15%) patients experienced 466 ambulatory CLABSIs with an incidence density of 0.97 CLABSIs per 1000 CL days. Incidence density was highest among patients with tunneled externalized catheters versus peripherally inserted central catheters and totally implanted devices: 2.58 CLABSIs per 1000 CL days versus 1.46 vs 0.23, respectively (P < .001). In a multivariable model, clinic visit (odds ratio [OR] 2.8; 95% confidence interval [CI]: 1.4-5.5) and low albumin (OR 2.3; 95% CI: 1.2-4.3) were positively associated with CLABSI, and prophylactic antimicrobial agents for underlying conditions within the preceding 30 days (OR 0.22; 95% CI: 0.12-0.40) and operating room CL placement (OR 0.36; 95% CI: 0.16-0.79) were inversely associated with CLABSI. A total of 396 patients (85%) were hospitalized because of ambulatory CLABSI with an 8-day median length of stay (interquartile range 5-13). CONCLUSIONS: Ambulatory pediatric CLABSI incidence density is appreciable and associated with health care use. CL type, patients with low albumin, prophylactic antimicrobial agents, and placement setting may be targets for reduction efforts.

Primary care clinicians' knowledge and confidence about newborn screening for sickle cell disease: randomized assessment of educational strategies.

OBJECTIVE: In Massachusetts, primary care clinicians receive and act upon hemoglobinopathy newborn screening results. We assessed clinicians' knowledge, confidence, and practices regarding hemoglobinopathy newborn screening, and the effect of mailed educational materials vs interactive seminar on knowledge and confidence. METHODS: A randomized educational intervention trial was performed at 15 community health sites. Practices were randomized to determine the order in which the educational interventions were administered: mailed educational materials first or interactive seminars on the management of hemoglobinopathy newborn screening results first. Clinicians' demographics, knowledge, confidence, and practices were assessed by a survey. Posttests were administered soon after the intervention. RESULTS: Responses came from 85 of 170 eligible providers (50%). Twenty-nine percent of respondents provided both pretests and posttests. In respondents with paired data, knowledge on a 5-point scale improved by 1.4 +/- 0.4 (mean +/- standard error of the mean, p = .003), while self-efficacy on a 16-point scale increased by 1.3 +/- 0.3, p = .002. There were no significant differences between seminar and mailed-materials groups. CONCLUSIONS: Both educational strategies led to modest improvements in knowledge about newborn screening for hemoglobin disorders. Enhancing knowledge and confidence about newborn screening-related tasks may improve clinicians' capacity to act upon newborn screening results for hemoglobinopathies.

Relationships Between Material Hardship, Resilience, and Health Care Use.

BACKGROUND: Material hardship has been associated with adverse health care use patterns for children with special health care needs (CSHCN). In this study, we assessed if resilience factors were associated with lower emergency department (ED) visits and unmet health care needs and if they buffered associations between material hardship and health care use for CSHCN and children without special health care needs. METHODS: A cross-sectional study using the 2016 National Survey of Children's Health, restricted to low-income participants (<200% federal poverty level). Separately, for CSHCN and children without special health care needs, weighted logistic regression was used to measure associations between material hardship, 2 resilience factors (family resilience and neighborhood cohesion), and 2 measures of use. Moderation was assessed using interaction terms. Mediation was assessed using structural equation models. RESULTS: The sample consisted of 11 543 children (weighted: n = 28 465 581); 26% were CSHCN. Material hardship was associated with higher odds of ED visits and unmet health care needs for all children. Resilience factors were associated with lower odds of unmet health care needs for CSHCN (family resilience adjusted odds ratio: 0.58; 95% confidence interval: 0.36-0.94; neighborhood cohesion adjusted odds ratio: 0.53; 95% confidence interval: 0.32-0.88). For CSHCN, lower material hardship mediated associations between resilience factors and unmet health care needs. Neighborhood cohesion moderated the association between material hardship and ED visits (interaction term: P = .02). CONCLUSIONS: Among low-income CSHCN, resilience factors may buffer the effects of material hardship on health care use. Future research should evaluate how resilience factors can be incorporated into programs to support CSHCN.

Pediatric ambulatory catheter-associated urinary tract infections (CAUTIs): Incidence, risk factors, and patient outcomes.

OBJECTIVE: Catheter-associated urinary tract infections (CAUTIs) occur frequently in pediatric inpatients, and they are associated with increased morbidity and cost. Few studies have investigated ambulatory CAUTIs, despite at-risk children utilizing home urinary catheterization. This retrospective cohort and case-control study determined incidence, risk factors, and outcomes of pediatric patients with ambulatory CAUTI. DESIGN: Broad electronic queries identified potential patients with ambulatory urinary catheters, and direct chart review confirmed catheters and adjudicated whether ambulatory CAUTI occurred. CAUTI definitions included clean intermittent catheterization (CIC). Our matched case-control analysis assessed risk factors. SETTING: Five urban, academic medical centers, part of the New York City Clinical Data Research Network. PATIENTS: Potential patients were age <22 years who were seen between October 2010 and September 2015. RESULTS: In total, 3,598 eligible patients were identified; 359 of these used ambulatory catheterization (representing186,616 ambulatory catheter days). Of these, 63 patients (18%) experienced 95 ambulatory CAUTIs. The overall ambulatory CAUTI incidence was 0.51 infections per 1,000 catheter days (1.35 for indwelling catheters and 0.47 for CIC; incidence rate ratio, 2.88). Patients with nonprivate medical insurance (odds ratio, 2.5; 95% confidence interval, 1.1-6.3) were significantly more likely to have ambulatory CAUTIs in bivariate models but not multivariable models. Also, 45% of ambulatory CAUTI resulted in hospitalization (median duration, 3 days); 5% resulted in intensive care admission; 47% underwent imaging; and 88% were treated with antibiotics. CONCLUSIONS: Pediatric ambulatory CAUTIs occur in 18% of patients with catheters; they are associated with morbidity and healthcare utilization. Ambulatory indwelling catheter CAUTI incidence exceeded national inpatient incidence. Future quality improvement research to reduce these harmful infections is warranted.

Costs of ambulatory pediatric healthcare-associated infections: Central-line-associated bloodstream infection (CLABSIs), catheter-associated urinary tract infection (CAUTIs), and surgical site infections (SSIs).

OBJECTIVE: Ambulatory healthcare-associated infections (HAIs) occur frequently in children and are associated with morbidity. Less is known about ambulatory HAI costs. This study estimated additional costs associated with pediatric ambulatory central-line-associated bloodstream infections (CLABSIs), catheter-associated urinary tract infections (CAUTI), and surgical site infections (SSIs) following ambulatory surgery. DESIGN: Retrospective case-control study. SETTING: Four academic medical centers. PATIENTS: Children aged 0-22 years seen between 2010 and 2015 and at risk for HAI as identified by electronic queries. METHODS: Chart review adjudicated HAIs. Charges were obtained for patients with HAIs and matched controls 30 days before HAI, on the day of, and 30 days after HAI. Charges were converted to costs and 2015 USD. Mixed-effects linear regression was used to estimate the difference-in-differences of HAI case versus control costs in 2 models: unrecorded charge values considered missing and a sensitivity analysis with unrecorded charge considered $0. RESULTS: Our search identified 177 patients with ambulatory CLABSIs, 53 with ambulatory CAUTIs, and 26 with SSIs following ambulatory surgery who were matched with 382, 110, and 75 controls, respectively. Additional cost associated with an ambulatory CLABSI was $5,684 (95% confidence interval [CI], $1,005-$10,362) and $6,502 (95% CI, $2,261-$10,744) in the 2 models; cost associated with a CAUTI was $6,660 (95% CI, $1,055, $12,145) and $2,661 (95% CI, -$431 to $5,753); cost associated with an SSI following ambulatory surgery at 1 institution only was $6,370 (95% CI, $4,022-$8,719). CONCLUSIONS: Ambulatory HAI in pediatric patients are associated with significant additional costs. Further work is needed to reduce ambulatory HAIs.

Material Hardships and Health Care Utilization Among Low-Income Children with Special Health Care Needs.

OBJECTIVE: Material hardships, defined as difficulty meeting basic needs, are associated with adverse child health outcomes, including suboptimal health care utilization. Children with special health care needs (CSHCN) may be more vulnerable to the effects of hardships. Our objective was to determine associations between material hardships and health care utilization among CSHCN. METHODS: We conducted a cross-sectional study surveying caregivers of 2- to 12-year-old CSHCN in a low-income, urban area. Independent variables were parent-reported material hardships: difficulty paying bills, food insecurity, housing insecurity, and health care hardship. Dependent variables were parent-reported number of emergency department (ED) visits, any hospital admission, and any unmet health care need. We used negative binomial and logistic regression to assess for associations between each hardship and each outcome. RESULTS: We surveyed 205 caregivers between July 2017 and May 2018 and analyzed the data in 2018. After adjustment, difficulty paying bills (incidence rate ratio [IRR], 1.51; 95% confidence interval [CI], 1.08-2.12) and health care hardship (IRR, 1.72; 95% CI, 1.08-2.75) were associated with higher rates of ED visits. There were no associations between hardships and hospital admission. Difficulty paying bills (adjusted odds ratio [AOR], 2.13; 95% CI, 1.14-3.98), food insecurity (AOR, 1.95; 95% CI, 1.02-3.71), and housing insecurity (AOR, 2.71; 95% CI, 1.36-5.40) were associated with higher odds of unmet health care need. CONCLUSIONS: Material hardships were associated with higher rates of ED visits and greater unmet health care need among low-income CSHCN. Future examination of the mechanisms of these associations is needed to enhance support for families of CSHCN.

Corrigendum to "Hepatic Iron Quantification on 3 Tesla (3 T) Magnetic Resonance (MR): Technical Challenges and Solutions".

[This corrects the article DOI: 10.1155/2013/628150.].

Prenatal Material Hardships and Infant Regulatory Capacity at 10 Months Old in Low-Income Hispanic Mother-Infant Pairs.

OBJECTIVE: Prenatal maternal stresses have been associated with infant temperament patterns linked to later behavioral difficulties. Material hardships, defined as inability to meet basic needs, are important prenatal stressors. Our objective was to determine the associations between prenatal material hardships and infant temperament at 10 months. METHODS: This was a longitudinal study of mother-infant pairs in a randomized controlled trial of a primary care-based early obesity prevention program (Starting Early). Independent variables representing material hardship were: housing disrepair, food insecurity, difficulty paying bills, and neighborhood stress (neighborhood safety). Dependent variables representing infant temperament were assessed using questions from 3 subscales of the Infant Behavior Questionnaire: orienting/regulatory capacity, negative affect, and surgency/extraversion. We used linear regression to investigate associations between individual and cumulative hardships and each temperament domain, adjusting for confounders, and testing for depression as a moderator. RESULTS: Four hundred twelve mother-infant pairs completed 10-month assessments. Thirty-two percent reported food insecurity, 26% difficulty paying bills, 35% housing disrepair, and 9% neighborhood stress. In adjusted analyses, food insecurity was associated with lower orienting/regulatory capacity scores (ß = -0.25; 95% confidence interval [CI], -0.47 to -0.04), as were neighborhood stress (ß = -0.50; 95% CI, -0.83 to -0.16) and experiencing 3 to 4 hardships (compared with none; ß = -0.54; 95% CI, -0.83 to -0.21). For neighborhood stress, the association was stronger among infants of mothers with prenatal depressive symptoms (interaction term P = .06). CONCLUSION: Prenatal material hardships were associated with lower orienting/regulatory capacity. These findings support the need for further research exploring how temperament relates to child behavior, and for policies to reduce prenatal material hardships.

Rigorous and practical quality indicators in sickle cell disease care.

In recent years, several sickle cell-specific quality indicators have been developed using rigorous approaches. A review of the history and current status of the development of sickle cell-specific indicators highlights opportunities for future refinement. Despite efforts at alignment, lack of strong evidence hinders the adoption of current quality indicators across stakeholder groups. There are many directions in which to take the current existing quality indicators, including expanding to different age groups, aims of care such as safety and equity, and better understanding of contextual and environmental factors.