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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Child pain catastrophizing mediates the relation between parent responses to pain and disability in youth with functional abdominal pain.

OBJECTIVES: Functional abdominal pain (FAP) in youth is associated with substantial impairment in functioning, and prior research has shown that overprotective parent responses can heighten impairment. Little is known about how a range of parental behaviors (overprotection, minimizing, and/or encouragement) in response to their child's pain interact with child coping characteristics (eg, catastrophizing) to influence functioning in youth with FAP. In this study, it was hypothesized that the relation between parenting factors and child disability would be mediated by children's levels of maladaptive coping (ie, pain catastrophizing). METHODS: Seventy-five patients with FAP presenting to a pediatric pain clinic and their caregivers participated in the study. Youth completed measures of pain intensity (Numeric Rating Scale), pain catastrophizing (Pain Catastrophizing Scale), and disability (Functional Disability Inventory). Caregivers completed measures of parent pain catastrophizing (Pain Catastrophizing Scale), and parent responses to child pain behaviors (Adult Responses to Child Symptoms: Protection, Minimizing, and Encouragement/Monitoring subscales). RESULTS: Increased functional disability was significantly related to higher child pain intensity, increased child and parent pain catastrophizing, and higher levels of encouragement/monitoring and protection. Parent minimization was not related to disability. Child pain catastrophizing fully mediated the relation between parent encouragement/monitoring and disability and partially mediated the relation between parent protectiveness and disability. CONCLUSIONS: The impact of parenting behaviors in response to FAP on child disability is determined, in part, by the child's coping style. Findings highlight a more nuanced understanding of the parent-child interaction in determining pain-related disability levels, which should be taken into consideration in assessing and treating youth with FAP.

The effects of coping style on virtual reality enhanced videogame distraction in children undergoing cold pressor pain.

This study sought to evaluate the effectiveness of virtual reality (VR) enhanced interactive videogame distraction for children undergoing experimentally induced cold pressor pain and examined the role of avoidant and approach coping style as a moderator of VR distraction effectiveness. Sixty-two children (6-13 years old) underwent a baseline cold pressor trial followed by two cold pressor trials in which interactive videogame distraction was delivered both with and without a VR helmet in counterbalanced order. As predicted, children demonstrated significant improvement in pain tolerance during both interactive videogame distraction conditions. However, a differential response to videogame distraction with or without the enhancement of VR technology was not found. Children's coping style did not moderate their response to distraction. Rather, interactive videogame distraction with and without VR technology was equally effective for children who utilized avoidant or approach coping styles.

Assessing Psychosocial Risk and Resilience to Support Readiness for Gene Therapy in Sickle Cell Disease: A Consensus Statement.

Importance: The introduction of gene therapies into the clinical care landscape for individuals living with sickle cell disease (SCD) represents a momentous achievement with the potential to rewrite the story of the world's most prevalent heritable blood disorder. This disease, which was first described in 1910 and did not see a US Food and Drug Administration-approved therapeutic until 1998, is poised to be among the first to realize the promise of gene therapy and genome editing. However, the future of these treatments now rests on how evidence of safety, outcomes, and acceptance in clinical practice unfolds in SCD. Furthermore, historic injustices involving the exploitation of individuals from minoritized racial and ethnic groups in medical contexts necessitate extreme care in ensuring readiness among individuals with SCD considering genetic therapies. Objective: To address a gap in resources focused on patient readiness for gene therapy. Evidence Review: The Cure Sickle Cell Initiative organized the Patient Readiness and Resilience Working Group in September 2020. Membership was comprised of behavioral health clinicians and scientists with expertise in SCD, adults with lived experience with SCD, and a caregiver. Over 2 years, the working group developed consensus recommendations and created resources to guide implementation of pregene therapy patient readiness assessments. Recommendations centered on strategies to enhance delivery of education about gene therapy and assess knowledge and understanding, interest and motivation, and psychosocial risk and resilience factors. Findings: Five goals of a pregene therapy patient readiness assessment were identified: (1) gathering information about a patient's understanding of and perceived readiness for gene therapy; (2) encouraging an open dialogue; (3) providing a conceptualization of psychosocial factors that may influence participation in gene therapy; (4) identifying patient strengths that can be used to promote psychosocial well-being before, during, and after gene therapy; (5) identifying and addressing psychosocial risks. Conclusions and Relevance: Patient readiness and psychosocial factors will have tangible implications for the success of gene therapy at individual and collective levels. Health care institutions, industry, payers, policymakers, and clinicians all shoulder responsibility for ensuring that patients with SCD are adequately prepared for gene therapy and supported in ways that optimize readiness and access. Resources described here may be leveraged as a guide to support implementation of pregene therapy assessments of patient readiness and resilience in SCD.

Case study: videogame distraction reduces behavioral distress in a preschool-aged child undergoing repeated burn dressing changes: a single-subject design.

OBJECTIVE: This single-subject design study evaluated the feasibility and efficacy of passive and interactive videogame distraction on behavioral distress for a preschool-aged child receiving repeated burn dressing changes. METHOD: A 4-year-old girl underwent 3 baseline and 10 videogame distraction sessions (5 passive and 5 interactive) using a restricted alternating treatments design. Observed behavioral distress was coded, and parents and nurses rated the child's distress and cooperative behavior. RESULTS: Relative to baseline, behavioral distress decreased and cooperative behavior increased immediately after the onset of videogame distraction. Single Case Randomization Tests revealed significantly lower behavioral distress and greater cooperation during interactive videogame distraction relative to passive videogame distraction. CONCLUSIONS: Interactive videogame distraction appears to be a feasible and effective pain management strategy for a preschool-aged child undergoing repeated painful medical procedures.

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.

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.

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.

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.