The influence of child pain catastrophizing and parent behavior on health-related quality of life in pediatric sickle cell disease.

BACKGROUND: Literature suggests that a child's appraisal of pain and parent responses to pain are critical in predicting health-related outcomes. In youth with sickle cell disease (SCD), few investigations have examined child pain catastrophizing, and even fewer have examined the role that parents play in responding to SCD pain within the family context. The purpose of the current study was to examine the relationship between pain catastrophizing, parent response to child SCD pain, and health-related quality of life (HRQoL). PROCEDURE: The sample (N = 100) included youth with SCD (ages 8-18) and their parent. Parents completed a demographic questionnaire and the Adult Responses to Child Pain Symptoms; youth completed the Pain Catastrophizing Scale and Pediatric Quality of Life Inventory-SCD Module. RESULTS: Findings indicated that pain catastrophizing, parent minimization, and parent encouragement/monitoring significantly predicted HRQoL. Minimizing and encouragement/monitoring parent responses moderated the relationship between pain catastrophizing and HRQoL, such that parent minimizing weakened the relationship and parent encouragement/monitoring strengthened the relationship. CONCLUSIONS: Paralleling pediatric chronic pain literature, findings suggest that pain catastrophizing predicts HRQoL in youth with SCD. However, findings from moderation analyses diverge from the chronic pain literature; data suggest that encouragement/monitoring responses strengthen the negative relationship between child pain catastrophizing and HRQoL. Child pain catastrophizing and parent response to SCD pain may be appropriate targets for clinical intervention to improve HRQoL. Future studies should strive to better understand parent responses to SCD pain.

A dyadic analysis of parent and child pain catastrophizing and health-related quality of life in pediatric sickle cell disease.

ABSTRACT: The purpose of this study was to examine the dyadic and individual level effects of parent and child pain catastrophizing on child health-related quality of life (HRQOL) in pediatric sickle cell disease. Questionnaires assessing child pain frequency, child and parent pain catastrophizing, and child HRQOL were completed by youth and their primary caregiver. A Common Fate Model was estimated to test the dyadic level relationship between parent and child pain catastrophizing and child HRQOL. An Actor-Partner-Common Fate Model hybrid was estimated to test the relationship between child HRQOL and individual-level child pain catastrophizing and parent pain catastrophizing, respectively. In each model, child HRQOL was modelled as a dyadic variable by factoring parent and child ratings. Patients (N = 100, M age = 13.5 years, 61% female) and their caregivers (M age = 41.8 years, 86% mothers) participated. Dyad-level pain catastrophizing was negatively associated with child HRQOL, demonstrating a large effect (ß = -0.809). Individual-level parent and child pain catastrophizing were each uniquely negatively associated with child HRQOL, demonstrating small to medium effects (ß = -0.309, ß = -0.270). Individual level effects were net of same-rater bias, which was significant for both parents and children. Both the unique and the overlapping aspects of parent and child pain catastrophizing are significant contributors to associations with child HRQOL, such that higher levels of pain catastrophizing are associated with worse child HRQOL. Findings suggest the need for multipronged intervention targeting factors common to parent-child dyads and factors unique to parents and children, respectively.

Multimodal phenotyping and correlates of pain following hematopoietic cell transplant in children with sickle cell disease.

INTRODUCTION: There is limited understanding of pain, patient-reported outcomes (PROs) of health-related quality of life (HRQoL), psychological factors, and experimental pain sensitivity before and following hematopoietic cell transplant (HCT) in children with sickle cell disease (SCD). METHODS: Individuals aged 8 years and older, English speaking, and scheduled for a HCT were invited to participate in an observational study where they completed assessments of pain, PROs, psychological factors, and qualitative interviews before and around 3 months, 6 months, 1 year, and 2 years post-HCT. An optional substudy of experimental pain sensitivity before and around 6 month, 1 year, and 2 years post-HCT was also offered. RESULTS: Data from eight participants (median age 13.5 years, 25% female) with sickle cell anemia (SCA) or similarly severe genotype, and successful donor-derived erythropoiesis post-HCT are reported. We found that collection of pain, PROs, psychological factors, and qualitative data were feasible in the context of HCT. We found moderate to large differences in pain and some PROs between baseline to 1 year and baseline to 2 year post-HCT based on effect sizes, but only some differences were statistically significant. We found moderate to large differences in pressure pain threshold and moderate differences in cold pain threshold between baseline to 1 year and baseline to 2 year post-HCT based on effect sizes, but these differences were not statistically significant. Qualitative data indicated an improvement in pain and HRQoL post-HCT. CONCLUSION: This study provides a framework for the conduct of multimodal pain assessments before and after HCT, which is feasible but faced with unique barriers.

Use and efficacy of virtual, augmented, or mixed reality technology for chronic pain: a systematic review.

Aim: Characterize use and efficacy/effectiveness of virtual, augmented, or mixed reality (VR/AR/MR) technology as non-pharmacological therapy for chronic pain. Methods: Systematic search of 12 databases to identify empirical studies, of individuals who experience chronic pain or illness involving chronic pain, published between 1990 and 2021. JBI Critical Appraisal Checklists assessed study bias and a narrative synthesis was provided. Results: 46 studies, investigating a total of 1456 participants and including 19 randomized controlled trials (RCT), were reviewed. VR/AR/MR was associated with improved pain-related outcomes in 78% of the RCTs. Conclusion: While most studies showed effects immediately or up to one month post treatment, RCTs are needed to further evaluate VR/AR/MR, establish long-term benefits, and assess accessibility, especially among individuals who experience pain management disparities.

Virtual, augmented and mixed reality (VR/AR/MR) are technologies that can be used to manage chronic pain. The use and effectiveness of VR/AR/MR were examined during a review of 46 research studies, which included 1456 participants and 19 randomized controlled trials (RCTs). In 78% of the RCTs, VR/AR/MR improved pain or pain-related outcomes. While most studies showed a benefit on pain immediately or up to 1 month after treatment, more research is needed to assess the long-term benefits of VR/AR/MR on pain and understand how these technologies provide pain relief in the body. Additionally, the accessibility and cost­effectiveness of VR/AR/MR must be evaluated. These areas for future research must consider individuals who experience disparities in the treatment of chronic pain.

Identifying Chronic Pain Subgroups in Pediatric Sickle Cell Disease: A Cluster-Analytic Approach.

OBJECTIVES: Youth with sickle cell disease (SCD) and chronic pain, defined in this study as pain on most days for 3 months, experience variability in daily pain and physical and psychosocial functioning. This study aimed to (1) empirically derive chronic pain subgroups based on pain characteristics among youth with chronic SCD pain; and (2) investigate derived subgroups for differences in sociodemographics, clinical characteristics, and psychosocial and functional outcomes. MATERIALS AND METHODS: Youth with chronic SCD pain (n=62, Mage =13.9, SD=2.5, 10 to 18 y; 58% female, 60% HbSS) completed a battery of questionnaires. Clinical characteristics (eg, medications, treatments) and health care utilization were abstracted from electronic medical records. Hierarchical cluster analysis informed the number of clusters at the patient level. k-means cluster analysis used multidimensional pain assessment to identify and assign patients to clusters. RESULTS: Cluster 1 (n=35; Moderate Frequency, Moderate Pain) demonstrated significantly lower worst pain intensity, number of pain days per month, number of body sites affected by pain, and pain quality ratings. Cluster 2 (n=27; Almost Daily, High Pain) reported high ratings of worst pain intensity, almost daily to daily pain, greater number of body sites affected by pain, and higher ratings of pain quality (all P 's <0.05). There were no differences between subgroups by sociodemographics, clinical characteristics, or health care utilization. The Almost Daily, High Pain subgroup reported significantly higher pain interference, depressive symptoms, and pain catastrophizing than the Moderate Frequency, Moderate Pain subgroup. DISCUSSION: Identifying chronic SCD pain subgroups may inform tailored assessment and intervention to mitigate poor pain and functional outcomes.

Moving Beyond Patient-Level Drivers of Racial/Ethnic Disparities in Childhood Cancer.

Racial/ethnic disparities in childhood cancer survival persist despite advances in cancer biology and treatment. Survival rates are consistently lower among non-Hispanic Black and Hispanic children as compared with non-Hispanic White children across a range of hematologic cancers and solid tumors. We provide a framework for considering complex systems and social determinants of health in research examining the drivers of racial/ethnic disparities in childhood cancer survival, given that pediatric patients' interactions with the healthcare system are filtered through their caregiver, family, and societal structure. Dismantling the multi-level (patient, family, healthcare system, and structural) barriers into modifiable drivers is critical to developing policies and interventions toward equitable health outcomes. This commentary highlights areas at the family, healthcare system, and society levels that merit closer examination and proposes actions and interventions to support improvements across these levels. See recently published article in the November issue of CEBP, Racial/Ethnic Disparities in Childhood Cancer Survival in the United States p. 2010.

The distinct longitudinal impact of pain catastrophizing on pain interference among youth living with sickle cell disease and chronic pain.

Youth living with chronic sickle cell disease (SCD) pain are at risk for psychosocial distress and high levels of pain catastrophizing that contribute to functional impairment. This study aimed to identify the unique long-term impact of pain catastrophizing on pain impairment among youth with SCD. Youth with chronic SCD pain (N = 63, 10-18 years old, 58.3% female, 95.1% Black or African American) were recruited within comprehensive SCD clinics and completed a battery of measures at baseline and 4-months follow-up. A linear hierarchical regression examined baseline demographic and clinical characteristics (child SCD genotype, age, and average pain intensity), psychosocial functioning (anxiety, depression), and pain catastrophizing as predictors of pain interference at 4-months follow-up. Pain catastrophizing was the only unique predictor of pain interference at 4-months follow-up. Among youth with chronic SCD pain, pain catastrophizing warrants greater consideration as an important predictor that influences pain management and overall functioning.

Biopsychosocial Factors Associated with Parenting Stress in Pediatric Sickle Cell Disease.

Caregivers of children with sickle cell disease (SCD) experience significant physical and emotional hardship with their child's disease management. Little is known about the potential contributors to parenting stress in pediatric SCD. The present study aimed to identify child and caregiver biopsychosocial factors associated with disease-related parenting stress in pediatric SCD. Participants included 74 caregiver-youth dyads. Parenting stress was associated with increased child pain frequency, more missed school days, and increased healthcare utilization, and inversely correlated with caregiver mental health and social-emotional functioning. Parenting stress also partially explained the relationship between child pain frequency and healthcare utilization after controlling for parent depression and anxiety. Parenting stress may play a unique and critical role in pediatric SCD and underscore the impact parenting stress may have on youth in medical and academic settings. Further research is warranted to determine risk factors and appropriate interventions for parenting stress to improve comprehensive patient care.

Clinical Utility of CAT Administered PROMIS Measures to Track Change for Pediatric Chronic Pain.

Patient Reported Outcomes (PROs) are utilized in clinical registries and trials, necessitating development of benchmarks to enhance interpretability. This study aimed to 1) examine if PROMIS measures administered via computer adaptive testing (CAT) were responsive to change, and 2) highlight one method of assessing clinically significant change for youth seen in a tertiary pain clinic. Clinically significant change was achieved if patients had significantly reliable pre-to-post-changes greater than Reliable Change Index (RCI) value and reported decreased symptoms by at least one severity level (e.g., moderate to mild). Participants were 328 youth (8-17 years old) seen in a tertiary pediatric pain management clinic. Small to moderate effect sizes were noted across PROMIS measures (except Peer Relations). Reliable magnitudes of change were estimated for this sample as approximately 6 point reduction for Pain Interference and Mobility, 9 for Fatigue, and 11 for Anxiety and Depression. Depending on the measure, 10 to 24% were categorized as improved, 3 to 6% as deteriorated, and 68 to 81% were either not clinically elevated at baseline or remained unchanged at 3 months. Overall, PROMIS CAT measures demonstrated responsiveness to change over time. Estimation of clinically significant change offers preliminary yet rigorous benchmarks for evaluating treatment response and sets the stage for understanding treatment effects. PERSPECTIVE: This study assesses responsiveness of CAT administered PROMIS measures and highlights one methodological approach of presenting clinical significance for assessing treatment outcomes in pediatric chronic pain. These benchmarks will allow clinicians and researchers to evaluate treatment response utilizing PROs while allowing for a deeper understanding of treatment effects.

Pain and QOL in Pediatric Sickle Cell Disease: Buffering by Resilience Processes.

OBJECTIVE: Sickle cell disease (SCD) is a group of inherited blood disorders. The central feature of this chronic condition is pain. Several identified risk factors exacerbate the impact of pain on quality of life (QOL) in SCD; however, there are relatively fewer investigations of strengths-based resilience variables that might buffer the influence of pain on living with SCD. The purpose of this study was to examine strength-based resilience processes in youth with SCD and their parents. Grounded in an ecological resilience-risk model, we evaluated whether adolescent and parent protective factors (pain acceptance, mindfulness, and psychological flexibility) moderated the relation between adolescent-reported pain burden and QOL. METHODS: Ninety-three 12- to 18-year-old adolescents with SCD and their parents participated. Adolescents completed assessments of pain characteristics, pain acceptance, mindfulness, and QOL. Parents completed instruments measuring demographic and disease variables and parent psychological flexibility. RESULTS: Pain variables were associated with protective factors in predicted directions. Adolescent acceptance and mindfulness were positively correlated with QOL. Parent psychological flexibility and adolescent QOL were not related. After controlling for demographic, pain, and disease variables, moderation analyses indicated that adolescent pain acceptance buffered the relation between SCD pain burden and QOL. Moderation analyses were not significant for adolescent mindfulness or parent psychological flexibility. CONCLUSIONS: Results suggest that strengths-based factors may play an important role for adolescents' QOL within the context of SCD pain. Interventions that enhance teenagers' ability to accept pain might be particularly useful to improve QOL in adolescents living with SCD pain.

Psychosocial risk and health care utilization in pediatric sickle cell disease.

INTRODUCTION: Pain and complications related to pediatric sickle cell disease (SCD) are associated with higher health care utilization. In other pediatric chronic conditions, psychosocial screening can help identify children and families at risk of increased health care utilization to guide resource allocation, address treatment needs, and improve care. This study aimed to investigate the utility of psychosocial screening in predicting increased health care utilization among youth with SCD. METHODS: Youth with SCD (n = 74, 8-18 years) and their parents were recruited from comprehensive SCD clinics. Parents completed the Psychosocial Assessment Tool (PAT), which categorized family psychosocial risk into one of three categories: Universal (minimal distress), Targeted (elevated distress), and Clinical (persistent distress). Youth reported on their pain characteristics, and health care utilization was extracted from medical chart review. Differences in health care utilization were evaluated using analysis of variance (ANOVA) and moderation analyses. RESULTS: Based on PAT risk, families were categorized into Universal (56.8%), Targeted (29.7%), and Clinical (13.5%) risk groups, with no significant group differences across demographic variables. Patients in the Targeted group reported significantly higher pain frequency than those in the Universal group (F[2, 66] = 3.7, p < .05). The association between pain frequency and health care utilization significantly varied on the basis of psychosocial risk, such that Clinical psychosocial risk strengthened the connection between pain frequency and health care utilization (ß = .2, t = 2.1, p < .05). CONCLUSIONS: Integrating the PAT into routine clinical care may help health care providers identify families in need of greater psychosocial or medical support to further optimize SCD management.

The comfort ability program for adolescents with sickle cell pain: Evaluating feasibility and acceptability of an inpatient group-based clinical implementation.

BACKGROUND: Integration of nonpharmacological therapies, such as cognitive and behavioral pain management strategies, is recommended to support comprehensive disease and pain management among children and adolescents with sickle cell disease (SCD). The Comfort Ability Program for Sickle Cell Pain (CAP for SCP) introduces psychological and biobehavioral pain management strategies to children and adolescents with SCD. This study aimed to pilot the implementation of the CAP for SCP in a group setting to children and adolescents hospitalized for SCD pain examining feasibility, acceptability, and preliminary effectiveness on improving pain knowledge and coping efficacy. METHOD: Adaptation of CAP for SCP into a three-session group format was guided by four phases of the Dynamic Adaptation Process model: Exploration, Preparation, Implementation, and Sustainment. Youth with SCD (n = 57) hospitalized for pain participated in at least one session and completed self-report of knowledge of pain management skills, pain coping efficacy, and treatment acceptance. Completion rates of sessions and qualitative feedback were gathered to evaluate feasibility and acceptability. RESULTS: Feasibility of conducting inpatient group sessions was suboptimal; however, patients and medical providers reported moderate to high levels of treatment acceptance. Patients also reported significant improvements in knowledge of pain management skills following session 1. CONCLUSIONS: CAP for SCP is a patient-centered first-line psychoeducational intervention that can be integrated into clinical practice settings to introduce youth to cognitive and behavioral pain management strategies to support SCD pain management.

Parental Psychosocial Distress in Pediatric Sickle Cell Disease and Chronic Pain.

BACKGROUND: Pediatric sickle cell disease (SCD) management can result in considerable caregiver distress. Parents of youth with chronic SCD pain may face the additional challenge of managing children's chronic pain and chronic illness. This study examined associations between parent psychological distress and child functioning and the moderating role of chronic pain among youth with SCD. METHODS: Youth presenting to pediatric outpatient comprehensive SCD clinics and their primary caregivers completed a battery of questionnaires. Parents reported on parenting stress, parent mental and physical health, and family functioning. Children completed measures of pain characteristics, depressive symptoms, catastrophic thinking, functional disability, and quality of life. RESULTS: Patients (N = 73, Mage = 14.2 years, 57% female) and their caregivers (Mage = 41.1 years, 88% mothers, 88% Black) participated. Worse parent functioning was associated with worse child pain, functioning, quality of life, and depressive symptoms. Beyond the effects of SCD, chronic SCD pain magnified the negative associations between parenting stress frequency and child quality of life, parent physical health and child quality of life, and parent depressive symptoms and child depressive symptoms. CONCLUSIONS: Chronic pain may exacerbate the relations between parent and child functioning beyond the effects of SCD alone. The management of both SCD and chronic pain may present additional challenges for parents that limit their psychosocial functioning. Family-focused interventions to support parents and youth with chronic SCD pain are warranted to optimize health outcomes.

Changes in Pain and Psychosocial Functioning and Transition to Chronic Pain in Pediatric Sickle Cell Disease: A Cohort Follow-up Study.

OBJECTIVES: This study aimed to: (1) examine changes in pain, psychosocial functioning, and health care utilization among children and adolescents with sickle cell disease (SCD) over a 2-year period and (2) identify baseline biopsychosocial variables associated with the development and maintenance of chronic SCD pain at follow-up. MATERIALS AND METHODS: Forty-two youth (8 to 18 y old) with SCD completed a battery of self-report measures at baseline and 2-year follow-up. Analgesic, Anesthetic, and Addiction Clinical Trial Translational Innovations Opportunities and Networks and American Pain Society Pain Taxonomy (AAPT) diagnostic criteria were used to categorize patients into pain frequency groups at both timepoints: chronic (pain on most [≥15] d/mo for the past 6 mo, per AAPT diagnostic criteria), episodic (pain on 1 to 14 d/mo), or asymptomatic (0 d/mo). RESULTS: At baseline, 31% (n=13) had chronic pain, 50% (n=21) episodic pain, and 19% (n=8) were asymptomatic. At follow-up, 40.5% (n=17) had chronic pain, 52.4% (n=22) episodic pain, and 7.1% (n=3) were asymptomatic. Between baseline and 2-year follow-up, 12% (n=5) developed chronic SCD pain. Depressive symptoms and admissions for pain significantly increased over time for youth with chronic pain (Ps<0.05). An interaction effect revealed that baseline pain groups differed in their change in pain intensity over time (P<0.01). Baseline psychosocial factors (ie, higher functional disability, greater depressive symptoms, higher pain catastrophizing, and lower quality of life) were significantly associated with chronic pain at follow-up. DISCUSSION: Biopsychosocial factors may be associated with the development and maintenance of chronic SCD pain and their relative contributions warrant further study.

Preliminary evaluation of the clinical implementation of cognitive-behavioral therapy for chronic pain management in pediatric sickle cell disease.

OBJECTIVES: Evaluate the implementation of cognitive-behavioral therapy (CBT) for chronic pain in a clinical setting by comparing youth with sickle cell disease (SCD) who initiated or did not initiate CBT. DESIGN: Youth with SCD (ages 6-18; n = 101) referred for CBT for chronic pain were compared based on therapy attendance: Established Care; Early Termination; or Comparison (i.e., did not initiate CBT). SETTING: Outpatient pediatric psychology and comprehensive SCD clinics in 3 locations at a southeastern children's hospital. INTERVENTIONS: CBT delivery was standardized. Treatment plans were tailored to meet individualized needs. MAIN OUTCOME MEASURES: Healthcare utilization included pain-related inpatient admissions, total inpatient days, and emergency department reliance (EDR) at 12-months pre-post CBT. Patient-reported outcomes (PROs) included typical pain intensity, functional disability, and coping efficacy pre-post treatment. RESULTS: Adjusting for age, genotype, and hydroxyurea, early terminators of CBT had increased rates of admissions and hospital days over time relative to comparisons; those who established care had faster reduction in admissions and hospital days over time relative to comparisons. EDR decreased by 0.08 over time for Established Care and reduced by 0.01 for every 1 completed session. Patients who completed pre- and post-treatment PROs reported decreases in typical pain intensity, functional disability, and improved coping efficacy. CONCLUSIONS: Establishing CBT care may support reductions in admissions for pain, length of stay, and EDR for youth with chronic SCD pain, which may be partially supported by patient-reported improvements in functioning, coping, and lower pain intensity following CBT. Enhancing clinical implementation of multidisciplinary treatments may optimize the health of these youth.

Topical Review: State of the Field of Child Self-Report of Acute Pain.

OBJECTIVE: Children experience acute pain with routine and emergent healthcare, and untreated pain can lead to a range of repercussions. Assessment is vital to diagnosing and treating acute pain. Given the internal nature of pain, self-report is predominant. This topical review reflects on the state of the field of pediatric acute pain self-report, and proposes a framework for acute pain assessment via self-report. METHOD: We examine self-report of acute pain in preschool-age children through adolescents, and we detail a three-step process to optimize acute pain assessment. RESULTS: The first step is to decide between a pain screening or assessment. Several 0-10 self-report scales are available for pain screenings. Assessment requires specification of the goals and domains to target. Core criteria, common features, modulating factors, and consequences of acute pain provide a framework for a comprehensive pain assessment. Whereas there are some measures available to assess aspects of these domains, there are considerable gaps. Last, it is important to integrate the data to guide clinical care of acute pain. CONCLUSIONS: Self-report of acute pain is dominated by single-item intensity scales, which are useful for pain screening but inadequate for pain assessment. We propose a three-step approach to acute pain assessment in children. However, there is a need for measure development for a comprehensive evaluation of the core criteria, common features, modulating factors, and consequences of pediatric acute pain. In addition, there is limited guidance in merging data found in multifaceted evaluations of pediatric acute pain.

Enhancing Pain Assessment in Pediatric Sickle Cell Disease by Applying Quality Improvement Science.

OBJECTIVE: Standardized pain assessment and interventions are recommended for youth hospitalized for pain. This quality improvement (QI) project integrated into a pediatric psychology service aimed to increase the standardized assessment of pain-related functional ability for youth with sickle cell disease (SCD) hospitalized for pain. METHODS: Children and adolescents (n=102) with SCD referred for psychology consultation for poor coping in response to pain during hospitalization completed a validated self-report of functional ability in addition to pain intensity during inpatient psychology visits. At the time of the quality initiative, routine and standardized assessment of pain-related functional ability was not integrated into standard clinical care. Plan, Do, Study, Act (PDSA) cycles determined the feasibility and addressed common barriers of routine assessment and documentation of pain-related functional ability among youth with SCD during inpatient psychology visits with the primary goal to increase assessment of functional ability to at least 85% among patients with SCD referred for pediatric psychology consultation to address pain management within 1 year. RESULTS: Through iterative PDSA cycles, routine assessment of pain-related functional ability during psychology visits increased to an average of 93% over the course of 12 months. Routine, standardized assessment of functional ability was considered feasible within a pediatric psychology service. CONCLUSIONS/LESSONS LEARNED: This project supported the feasibility of integrating standardized assessment of functional ability to enhance pain assessment for youth hospitalized for SCD pain as part of routine clinical care in a multidisciplinary setting regardless of psychology referral.

Pediatric pain screening identifies youth at risk of chronic pain in sickle cell disease.

BACKGROUND: This study aimed to evaluate the preliminary validation and application of a pain screening tool to identify biopsychosocial risk factors for chronic pain in pediatric sickle cell disease (SCD) and classify youth with SCD into prognostic risk groups. METHOD: Youth presenting to a pediatric SCD clinic completed the Pediatric Pain Screening Tool (PPST), a brief 9-item self-report questionnaire developed for rapid identification of risk in youth with pain complaints. Youth also completed a battery of standardized patient-reported outcomes, including pain characteristics, pain burden, functional disability, pain interference, depressive symptoms, pain catastrophizing, and fear of pain. Healthcare utilization was extracted from medical chart review. RESULTS: Seventy-three 8- to 18-year-olds (94% Black, 57% female) with SCD participated. The PPST demonstrated discriminant validity that ranged from fair to excellent (area under the curves (AUC) = 0.74-0.93, P values < 0.001) for identifying significant pain frequency, disability, pain interference, and psychosocial distress. Receiver operating characteristic curve analyses indicated that previously established cutoff scores were appropriate for the SCD sample. Participants were classified into low-risk (28.8%), medium-risk (38.4%), and high-risk (32.9%) groups, with significant group differences across measures, F(18, 116) = 6.67, P < 0.001. The high-risk group reported significantly higher pain intensity, pain frequency, pain burden, functional disability, pain interference, and depressive symptoms relative to both low-risk and medium-risk groups (P values < 0.005). CONCLUSIONS: The high-risk group demonstrated a pain and psychosocial profile consistent with chronic SCD pain. The PPST may be useful for efficiently identifying youth with chronic SCD pain or those at risk of poor outcomes.

Executive Functioning Mediates the Relationship Between Pain Coping and Quality of Life in Youth With Sickle Cell Disease.

Objective: Sickle cell disease (SCD) is a lifelong condition characterized by pain, which is associated with reduced health-related quality of life (HRQL). Data suggest that patients with SCD vary in how they cope and their neurocognitive abilities. This study aimed to characterize executive functioning and pain coping styles in children with SCD experiencing a range of pain frequency (i.e., chronic, episodic, and asymptomatic) and to examine whether executive functioning mediates the relationship between pain coping and HRQL. Method: Participants included 100 children and adolescents with SCD between the ages of 8 and 18 years (M = 13.53, SD = 2.8) and their parents who were recruited during outpatient SCD clinic visits in a children's hospital. Children completed questionnaires related to pain experience and pain coping. Parents completed questionnaires about demographic information, their child's executive functioning, and HRQL. Results: Pain intensity, executive dysfunction, and engagement in emotion-focused coping (i.e., internalizing/catastrophizing and externalizing) predicted poor HRQL. In addition, engagement in emotion-focused coping predicted executive dysfunction. Multivariate analysis of covariance revealed executive functioning did not differ based on pain frequency; however, executive functioning was a significant mediator that helped explain the relationships between distraction and emotion-focused coping techniques on HRQL. Conclusion: Findings support that executive functioning is an important factor in understanding the relationship between pain coping and HRQL in youth with SCD. Future research is warranted to examine the potential impact of executive functioning on the utility of interventions targeting adaptive pain coping in youth with SCD.

Parent pain catastrophizing predicts child depressive symptoms in youth with sickle cell disease.

BACKGROUND: Youth with sickle cell disease (SCD) are at risk for recurrent pain and depressive symptoms, both of which contribute to poorer health outcomes. Furthermore, youth and family coping with child pain, including pain catastrophizing, is known to be associated with poorer psychosocial adjustment and greater functional disability among youth with SCD. In particular, child catastrophizing about pain and parent catastrophizing about their child's pain have been linked to increased pain and depressive symptoms in youth with chronic pain conditions. Despite this, the impact of child and parent pain catastrophizing on depressive symptoms remains unexplored in pediatric SCD. PROCEDURE: The current study evaluated the predictive value of child and parent pain catastrophizing on child depressive symptoms in a sample of 100 youth with SCD. Differences in child and parent pain catastrophizing across youth with and without clinically elevated depressive symptoms were also examined. RESULTS: Pain frequency and parent and child pain catastrophizing accounted for 35.9% of variance in child depressive symptoms, with only pain frequency and parent pain catastrophizing emerging as unique predictors of clinically elevated depressive symptoms. Additionally, parents of youth with clinically elevated depressive symptoms showed increased helplessness relative to parents of youth with minimal to mild depressive symptoms. CONCLUSIONS: Findings support the value of depression screening and interventions to promote parent self-efficacy in managing childhood SCD pain.