Impact of community health workers on quality of life in adolescents and young adults with sickle cell disease: The SHIP-HU study.

Health-related quality of life (HRQoL) is an important outcome for patients with sickle cell disease (SCD). It is often poor compared with other chronic medical conditions or measured as a multidomain disease-specific construct. We previously reported outcomes in the Start Healing in Patients with Hydroxyurea (SHIP-HU) randomized controlled trial in adolescents and adults with SCD at six clinical sites. Besides the primary outcomes, we also measured HRQoL as a secondary outcome. Patients in the intervention arm were each assigned community health workers (CHWs) who provided case management services. CHW services were independent of medical management, and medical managers were blinded to the study arm. Patients in the control arm received only standard of care. We hypothesized that having a CHW would improve HRQoL in patients enrolled in SHIP-HU. We did not find significant differences between domains of HRQoL in the two study arms. Possible explanations include selection bias of enrolled versus unenrolled patients, selection bias of sites, medical providers and medical management, enforced blinding, and a lack of cooperation between medical managers and CHWs. The importance of CHWs and HRQoL is nonetheless recognized based on the literature. Future interventions on HRQoL in SCD should consider alternative study designs and multimodal interventions.

Investigating home-based opioid use among youth with sickle cell disease using ecological momentary assessment.

BACKGROUND: Opioids are a common and essential treatment for acute sickle cell disease (SCD) pain. However, opioids carry well-known adverse side effects, including potential development of hyperalgesia and nociplastic pain. We characterized opioid use in youth with SCD using ecological momentary assessment (EMA) data, and investigated the relationships between home-based opioid use, pain, and a range of biopsychosocial factors. METHOD: Eighty-eight youth with SCD (aged 8-17 years) completed EMAs assessing home-based opioid use, pain, and related factors. Analyses consisted of descriptive and multilevel logistic regression to predict daily home opioid use. RESULTS: Youth averaged 3.64 weeks of EMAs. Approximately 35% of the sample (n = 31) took an opioid during the EMA period, and used them on only 24% of reported pain days. Youth who took opioids reported a higher percentage of pain days (t = -2.67, p < .05) and mean pain severity scores (t = -2.30, p < .05) than youth who did not take opioids. Multilevel logistic regression analyses indicated that high daily pain severity (odds ratio [OR] = 1.02, p < .01), older age (OR = 1.324, p < .01), and low positive affect (OR = 0.91, p < .01) were each related to an increased likelihood of opioid use. CONCLUSION: Youth with SCD take opioids appropriately in response to their pain, based on daily self-report. Beyond daily pain severity, age, and daily variation in positive affect were related to home-based opioid use. This suggests that behavioral interventions that enhance positive affect may promote reduced opioid use among youth with SCD.

Intraindividual pain variability metrics for youth with sickle cell disease: Relations to health outcomes.

BACKGROUND: While the majority of pediatric sickle cell disease (SCD) research has used mean pain intensity as the only pain metric, recent evidence suggests this metric alone is inadequate in describing the intraindividual variability in SCD pain experiences and subsequent impact. There is limited information on other intraindividual pain metrics in youth with SCD, or how they relate to health outcomes in this population. The aims of this study were to describe differing patterns of intraindividual pain metrics derived from ecological momentary assessments (EMAs) of youth with SCD and to characterize the unique relationships between these metrics and health outcomes. METHODS: Eighty-eight youth with SCD, aged 8-17 (mean age = 11.6), were recruited from three regional pediatric SCD clinics in the United States. At baseline, youth and their guardians reported on demographic and disease information. Then youth completed twice daily EMAs for up to 4 weeks. Pain metrics derived from EMA data were calculated including mean daily pain intensity (DP), SD-DP (standard deviation of DP), proportion of pain days (PPD), and 90th percentile of DP (p90). Pearson correlations were calculated between pain metrics and health outcomes. RESULTS: High DP and SD-DP were correlated with more anxiety symptoms, while high SD-DP and p90 were correlated with more depression symptoms. High SD-DP was correlated with low self-esteem, and high DP and PPD were correlated with low sickle cell self-efficacy. For healthcare utilization due to pain, high p90 was correlated with more emergency department visits, while high DP, p90, and PPD were correlated with more healthcare contacts. CONCLUSION: There are distinct associations between pain variability metrics beyond DP and health outcomes. Collectively, the patterns of associations suggest the utility of these pain metrics for determining risk in relation to specific health outcomes for youth with SCD.

Longitudinal Predictors of Pain in Pediatric Sickle Cell Disease.

OBJECTIVE: Despite the identified pathophysiology of vaso-occlusive pain in sickle cell disease (SCD), predictors of pain in youth with SCD remain elusive. In this study, we measured changes in pain frequency, intensity, and interference over 1 year and examined biopsychosocial risk factors (SCD disease severity, age, female, depression, and sleep quality) as possible longitudinal predictors. METHODS: Medical history was obtained from retrospective chart review for 79 children with SCD (ages 2-18 years; 48.1% female; 100% Black/African American; 83.5% SCD, SS genotype). As part of a clinical screening protocol, caregivers (n = 79) and youth 8-18 years (n = 43) completed psychosocial questionnaires approximately 1 year apart (M = 15.52 months, SD = 5.69). Zero-order correlations, paired t-tests, and hierarchical linear models examined longitudinal predictors of pain. The longitudinal bidirectional relationship between pain and sleep was also examined. RESULTS: The rate of severe SCD disease increased from 41.8% to 55.7% across the year, while most hematologic medical parameters remained stable. Increased depression and pain interference at survey 1 significantly predicted increased pain interference at survey 2. Poor sleep quality and increased pain frequency at survey 1 predicted increased pain frequency at survey 2. Finally, increased pain interference at survey 1 predicted poor sleep quality at survey 2. DISCUSSION: History of pain, depression, and sleep quality were longitudinal predictors of pain over 1 year in youth with SCD. Identifying longitudinal predictors of pain may lead to earlier identification of patients with a high-risk SCD pain phenotype and earlier medical, psychological, and behavioral interventions.

Black adolescents' racial discrimination and suicide behaviors: Testing perceived school safety as a protective moderator.

The current study examined associations between Black adolescents' (Mage = 15.55, SD = 1.23) racial discrimination and suicide behaviors (i.e., suicide ideation, suicide plan, and suicide attempts), and whether perceived school safety was a protective moderator. Furthermore, we tested gender differences in relations, which were not significant. Racial discrimination predicted greater suicide behaviors, and school safety informed less suicide behaviors. School safety moderated the relation between discrimination and suicide plan, such that at low school safety, discrimination predicted having a suicide plan but was not significant at high school safety. Furthermore, school safety moderated the relation between discrimination and suicide attempts. At low school safety, discrimination predicted more suicide attempts, but was not significant at high school safety.

Satisfaction and access to care for adults and adolescents with sickle cell disease: ASCQ-Me quality of care and the SHIP-HU study.

A lack of adult sickle cell providers has long been blamed for poor satisfaction and access to specialty care for adults with sickle cell disease (SCD). We were interested in comparing how adolescent and adult patients already in established SCD centers perceived access and quality of care. Hydroxyurea-eligible patients aged 15 years and older were enrolled in the Start Healing in Patients with Hydroxyurea trial, which required them to be affiliated with a SCD specialist. Patients were seen in one of three adult-oriented specialty clinic sites or one of three pediatric-oriented sites. At baseline, patients completed the Adult Sickle Cell Quality of Life Measurement Information System measure as part of a survey battery. Patients treated at adult clinic sites reported being less able to get timely ambulatory appointments (p = .004). They reported emergency department (ED) wait times of >1 h far more often (47.7 vs. 19.3%, p = .0048). They reported less overall satisfaction with care (7.47 vs. 8.77, p < .0001), and less satisfaction with care in the ED (2.88 vs. 3.4, p = .0068. Ambulatory satisfaction was no different between pediatric site versus adult site patients. Poorer systems of care appeared to underlie reported differences, rather than differences in biopsychosocial determinants. Even among specialty-care-affiliated SCD patients, those seen in adult clinics reported worse access to care and lower satisfaction with care than patients seen in pediatric clinics. In addition to increasing the number of adult SCD providers and better preparing pediatric SCD patients to transfer to adult programs, SCD clinical caregivers must also improve aspects of adult care quality to meet reasonable patient expectations of timeliness and interpersonal aspects of care quality.

The Association Between Adverse Childhood Experiences and Child Telomere Length: Examining Self-Regulation as a Behavioral Mediator.

Childhood adversity is linked to shortened telomere length (TL), but behavioral indicators of telomere attrition remain unclear. This study examined the association between adverse childhood experiences (ACEs) and child TL, and if ACEs were indirectly associated with TL through children's self-regulatory abilities (i.e., effortful control and self-control). Hypotheses were tested using national data from teachers, parents, and their children (N = 2,527; Mage  = 9.35, SD = .36 years). More ACEs were uniquely associated with short TL, and low self-control mediated the association between more ACEs and short TL. While longitudinal studies are needed to strengthen claims of causation, this study identifies a pathway from ACEs to TL that should be explored further.

Introduction to the Special Issue: Addressing Health Disparities in Pediatric Psychology.

This introduction to the special issue on Addressing Health Disparities in Pediatric Psychology provides context for why this special issue is needed, reviews key findings of the accepted articles, and discusses future directions for advancing the field. This special issue, one of three on this topic area that has been put forth in the history of this journal, comes at a critical point in our world. This is a time when the COVID-19 pandemic is systematically infecting Black, Indigenous, and People of Color and when there has been increased attention to systemic racism and intersecting violence inherent in multiple systems, including the justice, health, and educational systems. Using Kilbourne et al. (2016) framework, this special issue focuses on Phase 2 and Phase 3 research. Rather than only identifying health disparities (Phase 1), this issue focuses on understanding mechanisms and translating such understanding into interventions and policy changes. The accepted articles span a wide gamut from obesity to autism to rural populations. Furthermore, the articles provide methods for advancing the field beyond simply noting that systematic differences exist toward strategies to address these inequities. We conclude this introduction by discussing next steps for future research, with hopes that it inspires the next generation to study issues of disparities and inequity in deeper, more meaningful, and impactful ways.

Investigating the Sleep-Pain Relationship in Youth with Sickle Cell Utilizing mHealth Technology.

OBJECTIVES: The current study utilized mHealth technologies that were objective (e.g., sleep actigraphy and pulse oximetry) and time-sensitive (e.g., ecological momentary assessments [EMAs]) to characterize sleep in youth with sickle cell disease (SCD) and investigate the relationships between sleep variables and pain. It also investigated the influence of age on sleep and the sleep-pain relationship. METHODS: Eighty-eight youth with SCD (aged 8-17 years) were recruited from three regional pediatric SCD clinics. Youth completed twice daily EMAs for up to 4 weeks to assess nighttime subjective sleep quality and daily pain. They also wore a sleep actigraph for 2 weeks to assess sleep duration, sleep efficiency, and sleep latency, and a wrist-worn pulse oximeter for two nights to assess whether they had sleep apnea. Multilevel models were calculated predicting daily SCD pain using the sleep variables, age, and the interaction between age and the sleep variables. RESULTS: None of the sleep variables were related to one another. Poor subjective sleep quality during the night was related to high pain severity the next day, and high pain was related to poor subjective sleep quality that night. Older age was associated with poorer subjective sleep quality, shorter duration of nighttime sleep, and high sleep latency. Also, findings indicated that as age increased, the strength of the relationship between poor continuous subjective sleep quality and high pain severity increased. CONCLUSIONS: Future research is needed to examine possible mechanisms connecting subjective sleep quality to high pain.

Sleep Problem Risk for Adolescents With Sickle Cell Disease: Sociodemographic, Physical, and Disease-related Correlates.

The aims of the current study were to investigate whether SCD incurs an additional risk for poor sleep over and above the influence of sociodemographic factors (ie, race and sex) during adolescence, and to explore the relationships between sociodemographic, physical (ie, age and pubertal status), and disease-related factors (ie, SCD genotype and hydroxyurea use) on sleep problem risk during adolescence. Black adolescents (age, 12 to 17 y) with SCD (n=53) were recruited from regional pediatric SCD clinics in the southeast and a sample of healthy black adolescents (n=160) were recruited from middle and high schools. Regression analyses indicated that SCD was uniquely related to sleeping more, and worse sleep quality over and above the influence of sociodemographic factors. Having a more severe SCD genotype was related to worse sleep quality and higher pubertal status was related to sleeping longer during the week. Results indicate the need for systematic assessments of sleep problems, with more a focus on youth with more severe genotypes and higher pubertal status. Future research should focus on characterizing trajectories of sleep problems in this population, identifying key risk factors, and elucidating mechanisms linking risk factors to sleep problem risk to aid in tailoring interventions for this population.

Experiences of Pediatric Patients With Sickle Cell Disease in Rural Emergency Departments.

BACKGROUND: The aims of this study were to describe guardian perceptions of the experiences of a sample of youth with sickle cell disease (SCD) in rural emergency departments (EDs) with a focus on overall patient satisfaction and characteristics of care. PROCEDURE: Guardians of 139 children with SCD (0 to 17 y) seen at a rural pediatric SCD clinic completed a survey concerning their children's ED experiences in the past 6 months, including information about ED wait times, quality of communications and interactions with the ED health care providers, pain management, perceptions of speed of care, and overall satisfaction. RESULTS: About 41% of guardians reported that their child visited the ED in the past 6 months. Guardians reported moderate satisfaction with ED care. About 25% of those who visited the ED indicated that health care providers did not spend enough time with them and their children did not receive speedy care. Shorter ED wait times and higher ratings of speed of care predicted higher satisfaction. CONCLUSIONS: Families of youth with SCD are experiencing longer wait times in rural EDs which contribute to dissatisfaction with care. Efforts are needed to develop strategies to reduce ED wait times and improve speed of care which may improve outcomes following ED care.

Risk and resilience factors for grade retention in youth with sickle cell disease.

BACKGROUND: Youth with sickle cell disease (SCD) are at higher risk for grade retention than healthy peers. This is salient because research suggests grade retention is ineffective and places youth at additional risk for negative outcomes. The aims of the present study were to identify possible risk factors for grade retention in youth with SCD and to examine positive family functioning as a possible resilience factor. PROCEDURE: Data were extracted from phase 3 of the Cooperative Study of Sickle Cell Disease, a multisite, longitudinal study of individuals with SCD. Participants were 370 youth, aged 6-16 years, with complete data on history of grade retention. Collected data included demographics, history of grade retention, disease severity factors, evidence of stroke, family functioning, and academic achievement. A logistic regression model predicting grade retention was calculated. RESULTS: Increasing age, lower reading achievement, and lower family cohesion were predictive of higher likelihood of grade retention. Also, high family achievement-orientation moderated the negative effects of increasing age on likelihood of grade retention, such that at increasing levels of family achievement-orientation, the relationship between age and grade retention decreased. CONCLUSIONS: These findings suggest the need for interventions that promote connectedness and achievement-orientation in families of youth with SCD. Research is also needed to further explore other possible risk or resilience factors for grade retention in this population, such as school absenteeism.

Vaso-occlusive crisis pain intensity, frequency, and duration: which best correlates with health-related quality of life in adolescents and adults with sickle cell disease?

ABSTRACT: In a cross-sectional analysis of baseline data from a randomized clinical trial, we studied 198 adolescents and adults aged 15+ with sickle cell disease. Interest was in assessing the relative strengths of the relationship of vaso-occlusive crisis (VOC) pain domains of intensity, frequency, and duration, with health-related quality of life (HRQOL). Variation in psychosocial, physical function, and pain expression domains of HRQOL was partially explained by frequency, intensity, and duration of VOC pain, separately and together, over and above differences in age, sex, genotype, and organ system damage. However, no single domain measure accounted for more than an additional partial R2 of 12.5% alone. Vaso-occlusive crisis pain frequency explained the most variation, when simultaneously considering VOC intensity and duration, except for stiffness , where duration was most predictive. Yet VOC pain intensity, and even VOC duration, also contributed to variability in HRQOL. We recommend that for most purposes, because all 3 VOC pain domains contribute to variability in HRQOL, all 3 domains should be assessed and interventions should be targeted to improve all 3 domains to maximize HRQOL outcomes (Clinical Trial Registration: ClinicalTrials.gov Identifier: NCT02197845 ).

Protective factors for adverse childhood experiences: Scoping review and evidence gap map.

OBJECTIVE: Adverse childhood experiences (ACES) negatively impact mental, physical, and behavioral health of adults. To develop empirically supported interventions to reduce the impact of ACES, we need to have a strong empirical base of research on modifiable protective factors that reduce the link between ACES and health outcomes. The current review is focused on assessing the state of the literature on modifiable protective factors on the ACE-health outcome relationship in adults. METHOD: We conducted a scoping review in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic search for peer-reviewed literature published in English was conducted in Medline, Embase, PsycINFO, CINAHL, and Web of Science from inception of the databases to January 5, 2023. We then constructed an evidence gap map to provide an innovative, visual approach to guide research prioritization. RESULTS: Seventy-seven articles met inclusion criteria. Findings indicated that the majority focused on mental health outcomes (59%), and investigated individual (52%) and general social support (23%) protective factors. Also, the majority of the work was done in North America (65%) with predominantly female samples. CONCLUSIONS: Future studies should focus on addressing gaps in our understanding of what factors may buffer the influence of ACES on physical health outcomes and risky health behaviors and our understanding of family and nonfamily relationships and community and cultural protective factors on the ACE-health outcome relationship in adults. Additionally, research is needed that focuses on samples that are more gender diverse and from countries outside of North America. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Precision, integrative medicine for pain management in sickle cell disease.

Sickle cell disease (SCD) is a prevalent and complex inherited pain disorder that can manifest as acute vaso-occlusive crises (VOC) and/or chronic pain. Despite their known risks, opioids are often prescribed routinely and indiscriminately in managing SCD pain, because it is so often severe and debilitating. Integrative medicine strategies, particularly non-opioid therapies, hold promise in safe and effective management of SCD pain. However, the lack of evidence-based methods for managing SCD pain hinders the widespread implementation of non-opioid therapies. In this review, we acknowledge that implementing personalized pain treatment strategies in SCD, which is a guideline-recommended strategy, is currently fraught with limitations. The full implementation of pharmacological and biobehavioral pain approaches targeting mechanistic pain pathways faces challenges due to limited knowledge and limited financial and personnel support. We recommend personalized medicine, pharmacogenomics, and integrative medicine as aspirational strategies for improving pain care in SCD. As an organizing model that is a comprehensive framework for classifying pain subphenotypes and mechanisms in SCD, and for guiding selection of specific strategies, we present evidence updating pain research pioneer Richard Melzack's neuromatrix theory of pain. We advocate for using the updated neuromatrix model to subphenotype individuals with SCD, to better select personalized multimodal treatment strategies, and to identify research gaps fruitful for exploration. We present a fairly complete list of currently used pharmacologic and non-pharmacologic SCD pain therapies, classified by their mechanism of action and by their hypothesized targets in the updated neuromatrix model.

Sleep and Fatigue as Mediators of Racial Discrimination and Internalizing Symptoms in Black Adolescent-Caregiver Dyads.

While the association of racial discrimination and internalizing symptoms in Black individuals is well established, we still have a limited understanding of mechanisms and contextual factors influencing this association, such as sleep and the family context. The present study examined sleep and fatigue as mediators underlying the relationship between racial discrimination and internalizing symptoms within Black adolescent-caregiver dyads. Using data from a larger survey study of risk and resilience in Black adolescents (Mage= 14.36, 49.5% female) and their caregivers (Mage= 39.25, 75.9% female), we used the Actor-Partner Interdependence Model extended Mediation (APIMeM) to test associations of racial discrimination, sleep factors, and internalizing symptoms among 179 dyads. Significant actor effects revealed that sleep disturbance and fatigue independently mediated the association of racial discrimination and internalizing symptoms among adolescents and caregivers. Additionally, partner effects were found, such that adolescents' experiences of discrimination were indirectly associated with their caregivers' internalizing symptoms via caregiver fatigue. No direct or indirect effects of caregiver experiences of discrimination on adolescent outcomes were found. The findings highlight the important role sleep and fatigue play in the link between racial discrimination and internalizing symptoms among Black adolescents and adults; and the role that the family context may play in this association. Mental health and sleep interventions for Black individuals should address the impact of racial discrimination on internalizing symptoms, with an emphasis on family-focused interventions.

Personal- vs. Group-Level Discrimination and Physical and Mental Health Outcomes Among Black Adolescents.

BACKGROUND: The negative health consequences of personal experiences of racial discrimination (personal-level discrimination) has been well-documented across developmental stages, including adolescence, in Black individuals. There is also some evidence suggesting perceiving other Black individuals experiencing racial discrimination (group-level discrimination) can protect one's health in Black adults. METHODS: This study examined the role of personal- and group-level discrimination in Black adolescent health. The study was a secondary analysis of survey data collected from 186 Black adolescents that included reports of discrimination, physical function, anxiety, and depression. RESULTS: Black adolescents who reported greater, as opposed to lower, personal-level discrimination were more likely to experience poorer physical and mental health outcomes. While group-level discrimination was also associated with physical health outcomes, it was not directly associated with mental health outcomes. Importantly, across all three health outcomes, awareness of group-level discrimination mitigated the negative health consequences of personal-level discrimination. Among adolescents who reported low levels of group-level discrimination, personal-level discrimination was associated negatively with physical function and positively with anxiety and depressive symptoms. Among adolescents who reported high levels of group-level discrimination, there was no association between personal-level discrimination and any of the health outcomes. DISCUSSION: Consistent with prior research with Black adults, awareness of high group-level discrimination may protect Black adolescents from the negative health consequences of personal-level discrimination. The pattern of the results is also consistent with the literature of the personal-group discrimination discrepancy (PGDD) and psychological wellbeing. Future research should investigate the psychological mechanisms implicated in PGDD (e.g., external attribution of discrimination and intragroup comparison) as potential coping strategies for Black adolescents against the negative health consequences of personal-level discrimination.

Structural Racism and Impact on Sickle Cell Disease: Sickle Cell Lives Matter.

Wealth begets health: the health care system in the United States is run by and benefits the groups that have traditionally held power. Systems of structural racism and health care disparities persist. Patients with sickle cell disease (SCD) remain particularly vulnerable to disparities. They suffer from stigmas, lack of well-trained providers, and from misalignment of their needs with the priorities of their health care teams. These critically important burdens may actually be worsening rather than improving mortality for individuals living with SCD. Changes must be made at the federal, state, and local levels in order to address these systems of inequity and save vulnerable lives.

Discrimination and Health Among First-Generation Hispanic/Latinx Immigrants: the Roles of Sleep and Fatigue.

INTRODUCTION: A growing literature documents the associations between discrimination and health. Emerging evidence suggests that among Hispanic/Latinx immigrants, discrimination leads to the deterioration of health outcomes over time. While sleep has been proposed as an important mediator of the relationship between discrimination and health, few studies have explicitly investigated this pathway, particularly among Hispanic/Latinx populations. OBJECTIVE: To investigate the relationships between racial/ethnic discrimination, sleep, and physical and mental health among Hispanic/Latinx immigrants in the USA. Data and Methods Using data from a parent study of first-generation Hispanic/Latinx immigrants in the southeastern USA, we conducted sequential mediation analyses using the bootstrapping method to investigate whether self-reported sleep duration, sleep quality, and fatigue mediate the relationship(s) between self-reported discrimination, as measured by the discrimination subscale of the Riverside Acculturative Stress Inventory, and self-reported physical and mental health. RESULTS: Nocturnal awakenings, fatigue, and sleep quality were statistically significant sequential mediators of the relationship between discrimination and physical health (b = -.001, SE = .001, CI [-.0027, -.0001]); fatigue alone also mediated this relationship (b = -.01, SE = .01, CI [-.0279, -.0003]). Nocturnal awakenings, fatigue, and sleep quality were also significant sequential mediators of the relationship between discrimination and mental health (b = -.001, SE = .001, CI [-.0031, -.0001]). CONCLUSION: Sleep and fatigue play an important role in linking discrimination and health among first-generation Hispanic/Latinx immigrants. The development and implementation of interventions that focus on reducing fatigue among this population could mitigate the effects of unfair treatment on health outcomes.