Racism and Health-Related Quality of Life in Pediatric Sickle Cell Disease: Roles of Depression and Support.

INTRODUCTIONS: Sickle cell disease (SCD) is the most commonly inherited blood disorder in the United States, and it predominately affects the Black community. SCD is characterized by a number of symptoms, including unpredictable pain, which can lead to hospitalizations. Data indicate that people with SCD experience racism and ample data indicate that racism predicts depressive symptoms and impaired health-related quality of life (HRQOL). In contrast, research suggests that social support might buffer the impact of racism on depression. The aim of this study was to explore associations among perceived racism, depressive symptoms, and HRQOL in adolescents with SCD. Consistent with the literature, it was predicted that perceived racism would predict HRQOL through depression, and social support would moderate the negative impact of racism on depression. METHODS: In a cross-sectional design, 75 inpatient adolescents with SCD completed measures of perceived racism, depressive symptoms, HRQOL, and social support. RESULTS: This results indicated a moderated mediation model with greater perceived racism predicting more depressive symptoms, which in turn related to poorer HRQOL; greater access to social support from individuals with SCD strengthened the perceived racism-depressive symptom association. CONCLUSIONS: Findings suggest a model for how racism, depressive symptoms, HRQOL, and social support might interact in hospitalized adolescents with SCD. Longitudinal or experimental designs are needed to substantiate directionality among these variables. Results highlight several areas for future research and clinical avenues to improve the welfare of youth with SCD.

Stigma and Pain in Adolescents Hospitalized for Sickle Cell Vasoocclusive Pain Episodes.

OBJECTIVES: Sickle cell disease (SCD) pain and hospitalizations increase during adolescence and adolescents with SCD may be at-risk for experiencing health-related stigma, which may result in poor health outcomes. This study examined relations among health-related stigma, pain interference, social support, quality of life (QOL), and hospital outcomes (ie, loneliness, pain reduction, and length of stay [LOS]) in adolescents hospitalized with SCD pain. MATERIALS AND METHODS: Twelve- to 18-year-old adolescents (N=92) hospitalized with SCD pain completed measures of stigma, pain interference, social support, QOL, and state loneliness. Reduction of pain intensity during hospitalization and LOS were collected from medical chart review. RESULTS: Higher stigma was associated with higher pain interference, lower QOL, more loneliness, and less pain reduction in the hospital. Pain interference was positively associated with LOS. DISCUSSION: These preliminary findings highlight the importance of assessing and addressing SCD-related stigma and pain interference in adolescents hospitalized for SCD pain as these factors may influence treatment outcomes.

Parent-Child Behavioral Interactions during Pediatric Immunizations in a Latino Sample.

A number of studies have found that specific parent behaviors are strong predictors of child medical procedural distress or coping. These findings have informed treatment protocols to lower children's distress during invasive medical events. However, the vast majority of this research has been conducted on predominately North American, English-speaking, Caucasian samples. One growing population that faces healthcare disparities is Latinos living in the U.S. The purpose of this study was to explore the types and frequencies of parent and child behavior, as well as the association between parent behavior and child distress and coping in a sample of Spanish-speaking Latino-American parent-child dyads. Nineteen 4- to 6-year-old Latino children receiving routine immunizations and their parents were video recorded, and behaviors were coded with commonly used schemes. The findings suggest that there may be differences in Latino parent and child behavior when compared to the extant - predominately English-speaking, Caucasian North American - literature. This study provides an initial examination of how cultural constructs may relate to parent-child behavior in Spanish-speaking Latino families in the U.S. Future research is warranted as findings can inform culturally sensitive clinical practice.

Screening for psychosocial risk at pediatric cancer diagnosis: the psychosocial assessment tool.

BACKGROUND: To investigate the feasibility of integrating an evidence-based screening tool of psychosocial risk in pediatric cancer care at diagnosis. METHODS: Parents of children newly diagnosed with cancer received either the Psychosocial Assessment Tool (PAT; n=52) or psychosocial care as usual (n=47; PAU), based on their date of diagnosis and an alternating monthly schedule. Time to completion of the PAT, time to communication of PAT results to clinical care teams, distribution of PAT risk scores, and identification of psychosocial risks in the medical record were examined. RESULTS: Of families receiving the PAT, 88% completed it within 48 hours. PAT was scored and results communicated within 48 hours in 98% of cases. Most families (72%) were classified as Universal risk based on the underlying Pediatric Psychosocial Preventative Health Model, 24% were classified as Targeted risk, and 4% scored in the Clinical range. Significantly more psychosocial risks were recorded in the medical record during PAT intervals than during PAU. CONCLUSIONS: An evidence-based psychosocial screener is feasible in pediatric oncology care and is associated with documentation of psychosocial risks in the medical record. Although the majority of families report low levels of psychosocial risk, about one-quarter report problems.

Self-reported health problems of young adults in clinical settings: survivors of childhood cancer and healthy controls.

PURPOSE: Increasing numbers of childhood cancer survivors are being seen in primary care settings as young adults. It is unknown how their self-reported health problems differ from those of healthy young adults. Self-reported health problems of cancer survivors and healthy controls are compared in this study. METHODS: 156 cancer survivors visiting a cancer survivorship program and 138 controls in primary care centers (mean age, 20 years) completed the Health Knowledge Inventory, a checklist of 35 health problems. RESULTS: Cancer survivors reported significantly more health problems than healthy controls (5.6 vs 2.6 problems; P < .001). For cancer survivors, more intense treatment and older age related to Organic/Major problems and Constitutional/Other problems. Female sex related to report of Organic/Major problems and Constitutional/Other problems for the controls. Although at least 20% of both healthy controls and survivors endorsed dermatologic, headache, gastrointestinal, and weight problems, survivors endorsed growth, thyroid, kidney, immunologic, heart, and fertility problems 4-fold over controls. CONCLUSIONS: Cancer survivors endorse significantly more health problems than do healthy controls. However, some problems are reported with equal frequency among the groups. Understanding these similarities and differences between survivors and healthy controls will facilitate patient-centered comprehensive care for young-adult cancer survivors.

Family psychosocial risk, distress, and service utilization in pediatric cancer: predictive validity of the Psychosocial Assessment Tool.

BACKGROUND: The way families negotiate diagnosis and early treatment for pediatric cancer sets the stage for their adaptation throughout treatment and survivorship. The Psychosocial Assessment Tool (PAT) is a brief parent-report screener capable of systematically identifying families at risk for problems of adaptation. The current study evaluated stability and predictive validity of PAT psychosocial risk classification with regard to distress, family functioning, and the use of psychosocial services over the first 4 months of treatment. METHODS: Caregivers of children with cancer completed the PAT and measures of distress and family functioning at diagnosis and again 4 months into treatment. At the second time point, social workers completed checklists of services provided and rated the intensity of their work with each family. Referrals to psychologists also were tracked. RESULTS: Psychosocial risk classification, based on the PAT, was stable across the first 4 months of cancer treatment; 57% to 69% of families remained at the same level of risk. PAT total scores did not differ across time, but subscale scores indicated increases in family and child (patient) problems and decreases in unhelpful beliefs. Families classified at higher levels of psychosocial risk at diagnosis had more distress, more family problems, and greater psychosocial service use 4 months into treatment. CONCLUSIONS: Understanding and identifying risks for psychosocial adjustment difficulties within families of children with cancer, considering changes across treatment and beyond, is very complex. Despite evidence of the predictive validity of PAT, additional research is necessary to find ways to effectively use this screener in practice to guide intervention.