National Quality Indicators in Pediatric Sickle Cell Anemia.

OBJECTIVE: To assess nationally endorsed claims-based quality measures in pediatric sickle cell anemia (SCA). METHODS: Using data from the Sickle Cell Data Collection programs in California and Georgia from 2010 to 2019, we evaluated 2 quality measures in individuals with hemoglobin S/S or S/ß-zero thalassemia: (1) the proportion of patients aged 3 months to 5 years who were dispensed antibiotic prophylaxis for at least 300 days within each measurement year and (2) the proportion of patients aged 2 to 15 years who received at least 1 transcranial Doppler ultrasound (TCD) within each measurement year. We then evaluated differences by year and tested whether performance on quality measures differed according to demographic and clinical factors. RESULTS: Only 22.2% of those in California and 15.5% in Georgia met or exceeded the quality measure for antibiotic prophylaxis, with increased odds associated with rural residence in Georgia (odds ratio 1.61; 95% confidence interval 1.21-2.14) compared with urban residence and a trend toward increased odds associated with a pediatric hematologist prescriber (odds ratio 1.28; 95% confidence interval 0.97, 1.69) compared with a general pediatrician. Approximately one-half of the sample received an annual assessment of stroke risk using TCD (47.4% in California and 52.7% in Georgia), with increased odds each additional year in both states and among younger children. CONCLUSIONS: The rates of receipt of recommended antibiotic prophylaxis and annual TCD were low in this sample of children with SCA. These evidence-based quality measures can be tracked over time to help identify policies and practices that maximize survival in SCA.

Guidance on Conversations About Race and Racism in Pediatric Clinical Settings.

OBJECTIVE: To develop guidance for pediatric clinicians on how to discuss race and racism in pediatric clinical settings. METHODS: We conducted a modified Delphi study from 2021 to 2022 with a panel of pediatric clinicians, psychologists, parents, and adolescents with expertise in racism and child health through scholarship or lived experience. Panelists responded to an initial survey with open-ended questions about how to talk to youth about race and racism. We coded the responses using qualitative methods and presented them back to the panelists. In iterative surveys, panelists reached a consensus on which themes were most important for the conversation. RESULTS: A total of 29 of 33 panelists completed the surveys and a consensus was reached about the concepts pediatric clinicians should consider before, during, and after conversations about race and racism and impediments clinicians may face while having these discussions. Panelists agreed that it was within the pediatric clinician's role to have these conversations. An overarching theme was the importance of having background knowledge about the systemic nature of racism. Panelists agreed that being active listeners, learning from patients, and addressing intersectionality were important for pediatric clinicians during conversations. Panelists also agreed that short- and long-term benefits may result from these conversations; however, harm could be done if pediatric clinicians do not have adequate training to conduct the conversations. CONCLUSIONS: These principles can help guide conversations about race and racism in the pediatric clinical setting, equipping clinicians with tools to offer care that acknowledges and addresses the racism many of their patients face.

Promoting Safe and Supportive Health Care Spaces for Youth Experiencing Racism.

OBJECTIVE: This qualitative study applies a community-based participatory research approach to elicit formative data on pediatric patient experiences of racism in the health care setting and to explore clinic-based opportunities for supporting pediatric patients experiencing racism. METHODS: The study is situated within the outpatient practice of a large tertiary academic medical center in a midsize Midwestern city. Community partners were involved in all aspects of the research, including research protocol design, recruitment, data analysis, community dissemination, and manuscript preparation. Participants were youth between 11 and 18 years, in middle or high school, self-identifying as a person of color, Latinx or Indigenous who answered yes to the question "have you ever experienced race-related prejudice and discrimination?" Parent/guardians of youth meeting inclusion criteria participated in separate focus groups. Data were analyzed using an interpretative phenomenological analysis approach. RESULTS: Major findings were divided into 2 categories: 1) racism-related experiences in the health care setting; and 2) patient and parent/guardian recommendations to support pediatric patients experiencing racism. Among health care setting experiences, primary emerging themes included racism experienced in the health care setting, patient-clinician communication around racism, patient-clinician concordance, and high-quality clinical care. Recommendations were presented within the 4 domains of racism: intrapersonal, interpersonal, structural, and institutional. CONCLUSIONS: Racism experiences worsen child biological, psychological, and behavioral functioning, yet research is lacking on how health care professionals may best support pediatric patients experiencing racism. Study findings suggest opportunities for providing safer and more supportive health care spaces for youth experiencing racism.

Racial and ethnic inequities in the quality of paediatric care in the USA: a review of quantitative evidence.

Racial and ethnic inequities in paediatric care have received increased research attention over the past two decades, particularly in the past 5 years, alongside an increased societal focus on racism. In this Series paper, the first in a two-part Series focused on racism and child health in the USA, we summarise evidence on racial and ethnic inequities in the quality of paediatric care. We review studies published between Jan 1, 2017 and July 31, 2022, that are adjusted for or stratified by insurance status to account for group differences in access, and we exclude studies in which differences in access are probably driven by patient preferences or the appropriateness of intervention. Overall, the literature reveals widespread patterns of inequitable treatment across paediatric specialties, including neonatology, primary care, emergency medicine, inpatient and critical care, surgery, developmental disabilities, mental health care, endocrinology, and palliative care. The identified studies indicate that children from minoritised racial and ethnic groups received poorer health-care services relative to non-Hispanic White children, with most studies drawing on data from multiple sites, and accounting for indicators of family socioeconomic position and clinical characteristics (eg, comorbidities or condition severity). The studies discussed a range of potential causes for the observed disparities, including implicit biases and differences in site of care or clinician characteristics. We outline priorities for future research to better understand and address paediatric treatment inequities and implications for practice and policy. Policy changes within and beyond the health-care system, discussed further in the second paper of this Series, are essential to address the root causes of treatment inequities and to promote equitable and excellent health for all children.

Racial socialization and discrimination-related psychological distress in middle-aged Black men and women.

Our objectives were to evaluate gender-specific associations of racial discrimination with psychological sequelae among middle-aged Blacks and to evaluate the capacity of racial socialization to moderate the association between discrimination and psychological distress, accounting for relevant prospectively assessed childhood factors. We used data from the Child Health and Development Disparities Study that followed a Northern California-based group of Blacks from the prenatal period through midlife (N = 244, 49.6% female). Multiple regression analyses were performed separately by gender to assess (a) the main effects of racial socialization and racial discrimination on adult psychological distress, (b) racial socialization as a moderator of the association between racial discrimination and adult psychological distress, and (c) whether controls for prospectively assessed childhood factors changed conclusions regarding the role of racial socialization. Seventy percent of the middle-aged Blacks in our sample reported having at least one type of major experience of racial discrimination. Increased reports of racial discrimination were positively associated with psychological distress in men, but not in women. Similarly, racial socialization was associated with decreased overall distress for men, but not for women. Discrimination-related distress was attenuated for men who reported higher levels of racial socialization. These findings remained after adjustment for childhood socioeconomic status (SES), childhood internalizing symptoms, parental marital separation, and number of siblings. Findings suggest that racial socialization conferred a protective psychological effect through midlife to Black men who experienced racial discrimination, a commonplace experience in this cohort. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

The Detrimental Influence of Racial Discrimination on Child Health in the United States.

BACKGROUND: The current literature describing the largely damaging effect of racial discrimination on child health is weakened by several confounding factors. We aimed to: 1) describe the relation between racial discrimination and child health and 2) evaluate the potential mediating role of mental health relating racial discrimination to child health, using methods that mitigate confounding. METHODS: Using the 2011-2012 National Survey of Children's Health (N = 95,677), we performed: 1) propensity score analysis, matching and comparing discrimination-exposed to non-exposed children and 2) structural equation modeling, examining mental health as a mediator of the pathway between discrimination and child health. RESULTS: In the first approach, the proportion of children with excellent health was 5.4% (95% Confidence Interval (CI), 3.6,7.2%) lower with exposure to racial discrimination. Among minority children, those with low income had the greatest decrements in general health associated with racial discrimination. Among white children, those with high income had the greatest decrements. In the structural equation model, minority children had higher odds of experiencing racial discrimination (Odds ratios (ORs) ≥ 5.47, [95% CIs, 4.92,10.6]); meanwhile, children who experienced discrimination were more likely to have anxiety and depression (ORs ≥ 3.58, [95% CIs, 2.87,4.58]), which were linked to lower odds of excellent health (ORs ≤ 0.44, [95% CIs, 0.41.52]). CONCLUSION: The negative health association of racial discrimination may be mediated by mental health and vary by racial, ethnic, or socioeconomic group. This work may stimulate the formation of targeted interventions to address these disparities.

The Role of Cognitive Behavioral Therapy in Opioid Use Reduction in Pediatric Sickle Cell Disease: Protocol for a Systematic Review.

BACKGROUND: Sickle cell disease (SCD) is a genetic disorder of red blood cells that results in acute and chronic health problems, including painful syndromes. Opioid analgesia is the mainstay of moderate to severe pain management in SCD, although adjunctive psychosocial approaches such as cognitive behavioral therapy (CBT) are increasingly incorporated. CBT has been used in populations of various ages to address a wide range of issues, such as mood disorders and chronic pain. It is unclear if effective CBT reduces the use of opioids to manage pain in pediatric SCD. OBJECTIVE: The aim of this study is to evaluate the association between CBT and decreased opioid use in children with SCD. METHODS: In this systematic review protocol, we describe our approach to applying predetermined eligibility criteria to searches of PubMed (including Medline), Embase, Cochrane, Web of Science, and PsycINFO databases, as well as Google Scholar and grey literature. In particular, we will use keywords to search for English-language studies of individuals with SCD aged 21 years old and younger published before November 2018. Keywords will allow us to assess for the primary outcome-total use of opioid medications-and the secondary outcomes-pain intensity and emotional functioning-during pain management using a combined opioid and CBT approach, opioids alone, or CBT alone. The review team will use standardized abstraction forms to review articles at the title, abstract, and full-text levels. Finally, reviewers will assess the risk for bias, quality of evidence, and adequacy of data for quantitative versus qualitative synthesis. If meta-analysis is deemed inappropriate, a narrative review will be conducted. RESULTS: We will report a summary of findings across studies that meet eligibility criteria to compare the extent to which adjunctive CBT is associated with decreased opioid use among children with SCD. CONCLUSIONS: This systematic review will present the current state of the evidence on CBT and opioid use in pediatric SCD, which may inform clinical practice and health policy to support optimized pain management. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/13211.

The Sociocultural Factors Underlying Latina Mothers' Infant Feeding Practices.

In this study, we examined the sociocultural factors underlying infant feeding practices. We conducted four focus groups with 19 Latina mothers of children 0 to 2 years of age enrolled in Early Head Start programs in the United States over a 1-year period. We found these mothers considered both science- and family-based feeding recommendations. However, advice from family was often inconsistent with science- and nutrition-based recommended feeding practices. In the interest of showing respect and preserving harmonious relationships, some mothers accepted family advice instead of recommended practices while others employed strategies to follow recommended practices without offending. Nutrition educators need to consider the intersection of macro, organizational, and community factors with micro-level processes in shaping the implementation of recommended feeding practices within family systems. Nutrition interventions for Latino families should capitalize on Latina mothers' strategies for navigating multiple information sources while preserving cultural values and family relationships.

How does sagittal imbalance affect the appropriateness of surgical indications and selection of procedure in the treatment of degenerative scoliosis? Findings from the RAND/UCLA Appropriate Use Criteria study.

BACKGROUND CONTEXT: Degenerative lumbar scoliosis (DLS) is often associated with sagittal imbalance, which may affect patients' health outcomes before and after surgery. The appropriateness of surgery and preferred operative approaches has not been examined in detail for patients with DLS and sagittal imbalance. PURPOSE: The goals of this article were to describe what is currently known about the relationship between sagittal imbalance and health outcomes among patients with DLS and to determine how indications for surgery in patients with DLS differ when sagittal imbalance is present. STUDY DESIGN/SETTING: This study included a literature review and an expert panel using the RAND/University of California at Los Angeles (UCLA) Appropriateness Method. METHODS: To develop appropriate use criteria for DLS, researchers at the RAND Corporation recently employed the RAND/UCLA Appropriateness Method, which involves a systematic review of the literature and multidisciplinary expert panel process. Experts reviewed a synopsis of published literature and rated the appropriateness of five common operative approaches for 260 different clinical scenarios. In the present work, we updated the literature review and compared panelists' ratings in scenarios where imbalance was present versus absent. This work was funded by the Collaborative Spine Research Foundation, a group of surgical specialty societies and device manufacturers. RESULTS: On the basis of 13 eligible studies that examined sagittal imbalance and outcomes in patients with DLS, imbalance was associated with worse functional status in the absence of surgery and worse symptoms and complications postoperatively. Panelists' ratings demonstrated a consistent pattern across the diverse clinical scenarios. In general, when imbalance was present, surgery was more likely to be appropriate or necessary, including in some situations where surgery would otherwise be inappropriate. For patients with moderate to severe symptoms and imbalance, a deformity correction procedure was usually appropriate and frequently necessary, except in some patients with severe risk factors for complications. Conversely, procedures that did not correct imbalance, when present, were usually inappropriate. CONCLUSIONS: Clinical experts agreed that sagittal imbalance is a major factor affecting both when surgery is appropriate and which type of procedure is preferred among patients with DLS.

Surgery for Degenerative Lumbar Scoliosis: The Development of Appropriateness Criteria.

STUDY DESIGN: The RAND/UCLA Appropriateness Method is a well-established means of developing criteria for assessing the appropriateness of surgery in specific subpopulations. It involves a systematic review of the literature and ratings by a multidisciplinary panel of national experts. OBJECTIVE: To evaluate the appropriateness of surgical interventions for degenerative lumbar scoliosis (DLS), including identifying clinical characteristics that influence when surgery is inappropriate, appropriate, or necessary, and which procedures are preferable. SUMMARY OF BACKGROUND DATA: DLS presents with diverse clinical symptoms and radiographic findings. Variability exists in both nonoperative and operative management. The appropriateness of surgery, and of specific surgical procedures, has not been defined for this important pathology of the aging spine. METHODS: We selected a panel of 11 experts, including surgical specialists from multiple disciplines. Next, we systematically reviewed relevant literature. Finally, in a three-round, modified-Delphi process, panelists rated the appropriateness and necessity of five different surgical procedures (dependent variables) on a nine-point scale for 260 different clinical scenarios that stratified patients according to age, medical comorbidities, symptoms, signs, and radiographic variables (independent variables). RESULTS: The 59 eligible studies identified via the systematic review were generally small or used weak designs. Panelists judged that surgery was generally appropriate for patients with at least moderate symptoms and larger or progressive deformities, moderate spinal or foraminal stenosis, or sagittal plane imbalance. Surgery was generally inappropriate for mild symptoms and smaller stable deformities, without sagittal imbalance or moderate stenosis, particularly among patients with advanced age and multiple comorbidities. For patients with larger or progressive deformities, imbalance, or severe multilevel stenosis, more extensive fusion and deformity correction procedures were generally preferred. CONCLUSION: Defining the appropriateness of surgery for patients with DLS will be useful to improve evidence-based clinical decision making as well as the consistency and quality of care for patients with DLS. LEVEL OF EVIDENCE: 3.

Minority Parents' Perspectives on Racial Socialization and School Readiness in the Early Childhood Period.

OBJECTIVE: To describe how minority parents help their young children navigate issues of race and racism and discuss implications this racial socialization may have for school readiness. METHODS: Sixteen focus groups were conducted among 114 African American, English language-primary Latino, Spanish language-primary Latino, and Korean language-primary Korean parents of children ages 0 to 4 years old. Transcripts were coded for major themes and subsequently compared across the 4 language-ethnicity groups. Parents also shared demographic and parenting data by survey, from which group-specific proportions provide context for identified themes. RESULTS: In this sample, nearly half of surveyed parents had already talked to their young child about unfair treatment due to race. The proportion of such conversations ranged from one-fifth of Korean parents to two-thirds of Spanish language-primary parents. In focus groups, Korean parents reported fewer experiences with racism than African American and Latino parents. Within each language-ethnicity group, fewer fathers than mothers reported addressing race issues with their young children. All focus groups endorsed messages of cultural pride, preparation for bias, and a strong focus on the individual. The majority of parents viewed racial socialization as an important part of school readiness. CONCLUSIONS: Racial socialization was believed to be salient for school readiness, primarily practiced by mothers, and focused at the individual level. The smaller role of fathers and systems-based approaches represent opportunities for intervention. These results may inform the development of culturally tailored parenting interventions designed to decrease the race-based achievement gap and associated health disparities.