Feasibility and Acceptability of Internet-delivered Cognitive Behavioral Therapy for Chronic Pain in Adolescents With Sickle Cell Disease and Their Parents.

Pain is a clinical hallmark of sickle cell disease (SCD), and is rarely optimally managed. Cognitive-behavioral therapy (CBT) for pain has been effectively delivered through the Internet in other pediatric populations. We tested feasibility and acceptability of an Internet-delivered CBT intervention in 25 adolescents with SCD (64% female, mean age=14.8 y) and their parents randomized to Internet CBT (n=15) or Internet Pain Education (n=10). Participants completed pretreatment/posttreatment measures. Eight dyads completed semistructured interviews to evaluate treatment acceptability. Feasibility indicators included recruitment and participation rates, engagement and adherence to intervention, and completion of outcome measures. In total, 87 referrals were received from 9 study sites; our recruitment rate was 60% from those families approached for screening. Among participants, high levels of initial intervention engagement (>90%), and adherence (>70%) were demonstrated. Most participants completed posttreatment outcome and diary measures (>75%). Retention at posttreatment was 80%. High treatment acceptability was reported in interviews. Our findings suggest that Internet-delivered CBT for SCD pain is feasible and acceptable to adolescents with SCD and their parents. Engagement and adherence were good. Next steps are to modify recruitment plans to enhance enrollment and determine efficacy of Internet CBT for SCD pain in a large multisite randomized controlled trial.

Describing Perceived Racial Bias Among Youth With Sickle Cell Disease.

Objectives: Sickle cell disease (SCD) predominately affects Black Americans. This is the first study of its kind to describe the racial bias experiences of youth with SCD and their reactions to these experiences. Methods: Participants were 20 youth with SCD (ages 13-21 years) who were asked to describe any racial bias events they experienced, as recorded on the Perception of Racism in Children and Youth measure (PRaCY). Interviews were recorded, transcribed, and analyzed by two independent raters using a conventional content analysis approach. Results: All participants reported at least one incident of racial bias. Content analysis of racial bias events (n = 104) yielded 4 categories and 12 subcategories as follows: Perpetrator (Peers, Authority Figures, and General Public), Type of Racial Bias (Explicit, Implicit), Behavioral Reaction (Approach, Avoidant), and Emotional Response (Dysphoria, Anger, Unconcerned, Inferior, Anxious). Discussion: This study provides a description of racial bias experiences within community and medical settings and highlights the need for further evaluation of the impact of racial bias among youth with SCD.

Preliminary Validation of the Pain Burden Inventory in a Pediatric Chronic Pain Population.

OBJECTIVE: To determine the preliminary reliability and validity of the Pain Burden Inventory-Youth (PBI-Y), a 7-item measure of the impact of chronic pain in adolescents with chronic pain that was, initially validated in youth with sickle cell disease. MATERIALS AND METHODS: A retrospective chart review of 130 patients presenting to an interdisciplinary pain clinic were examined with 98 (mean age=14.49; 66% female) comprising the final sample. Demographic information as well as adolescent and parent self-reported measures were examined. RESULTS: Youth reported a variety of pains including abdominal pain, headaches, back pain, and amplified musculoskeletal pain. The PBI-Y demonstrated strong internal reliability (α=0.792) and strong cross-informant concordance (r=0.822; P=0.000). Good construct validity was seen where higher scores on the PBI-Y were correlated with higher scores of (1) functional disability (r=0.689; P=0.000), (2) pain catastrophizing (r=0.494; P=0.000), (3) pain frequency days (r=0.526; P=0.000), (4) usual pain intensity (r=0.467; P=0.000), and (5) the worst pain intensity (r=0.485; P=0.000). Similar results were seen with caregiver assessments. Neither caregiver nor youth reports differed based on the sex or age of the child. DISCUSSION: The results support the psychometric properties of a brief self-report measure of pain impact in a pediatric chronic pain population. This measure may have great utility for clinicians caring for youth with chronic pain.

Perceived Racial Bias and Health-Related Stigma Among Youth with Sickle Cell Disease.

OBJECTIVE: Little is known about the role of perceived racial bias and health-related stigma on the health of youth with sickle cell disease (SCD). The purpose of this study was to investigate the occurrence of perceived racial bias and health-related stigma among youth with SCD and its relationship with psychological and physical well-being. METHODS: Twenty-eight youth with SCD, ages 13 to 21, were recruited from outpatient and inpatient settings at an urban children's medical center. Participants completed measures of perceived racial bias, perceived health-related stigma, depression, quality of life, and pain burden. RESULTS: Most participants endorsed occurrences of racial bias and health-related stigma. The findings indicate that greater perceived racial bias was associated with greater pain burden, and greater perceived health-related stigma was related to lower quality of life. CONCLUSION: Perceived racial bias and health-related stigma may be important to consider for future research investigating the psychological and physiological features of SCD for youth.

Altered Functional Connectivity in Sickle Cell Disease Exists at Rest and During Acute Pain Challenge.

OBJECTIVES: Sickle cell disease (SCD) is a chronic pain disorder in which abnormally shaped red blood cells obstruct microcirculation causing ischemia and pain. The lack of SCD responsiveness to analgesics has led many to propose that nociceptive neural systems engaged when detecting pain become sensitized, resulting in an enhancement of pain response. METHODS: Individuals with SCD and non-SCD controls were exposed to a painful stimuli of varying intensity using a pressure algometer and underwent several neuroimaging tasks. RESULTS: This study identified and characterized the neural correlates of possible central sensitization in SCD. We found functional connectivity abnormalities in individuals with SCD in the brain's somatosensory network, salience network, and default mode network during both an unstructured resting state and paradigm involving acute pain challenge. DISCUSSION: There was evidence for both increased and decreased connectivity which is consistent with findings in other chronic pain disorders. Preliminary evidence was found that subcortical brain regions might contribute to neurodevelopmental abnormalities in chronic pain. The results support a model in which SCD pain sensitization involves abnormally low functional integration of brain regions that make use of nociceptive information to plan movements, and hyperconnectivity of various frontal and parietal lobe regions that direct attention to or represent higher-order abstractions within circuits involved with either nocioceptive processing or detection of abnormally salient environmental stimuli.

Widespread Pain Among Youth With Sickle Cell Disease Hospitalized With Vasoocclusive Pain: A Different Clinical Phenotype?

OBJECTIVES: The purpose of this study was to describe the clinical phenotype of widespread pain (WSP) among youth with sickle cell disease (SCD) hospitalized with vasoocclusive pain. MATERIALS AND METHODS: One hundred fifty-six youth with SCD, between 7 and 21 years of age hospitalized at 4 children's hospitals for a vasoocclusive episode were evaluated. Data were collected during 1 day of the hospitalization. RESULTS: Using the 2010 American College of Rheumatology guidelines, 21.8% of patients were identified as having WSP (pain in 7 or more unique body locations). Patients classified as having WSP had higher pain intensity (6.5 vs. 5.6; t=2.19, P=0.03) higher pain burden (13.0 vs. 9.8; t=3.09, P=0.002), higher acute functional disability (22.1 vs. 16.5; t=2.43, P=0.016), higher chronic functional disability (30.4 vs. 22.2; t=2.31, P=0.02), lower positive affect (22.9 vs. 27.6; t=2.23, P=0.027), and lower quality of life (56.2 vs. 62.9; t=1.99, P=0.049) than those youth with SCD without WSP. DISCUSSION: Assessment of WSP may identify a unique clinical phenotype of youth with SCD with differing treatment needs.

Efficacy of Analgesic Treatments to Manage Children's Postoperative Pain After Laparoscopic Appendectomy: Retrospective Medical Record Review.

Knowledge of the effectiveness of multimodal analgesic treatments to manage children's postoperative pain during hospital stays is limited. Our retrospective chart review of a convenience sample of 200 pediatric surgical patients' pain experiences during the first 24 hours after laparoscopic appendectomy demonstrates the benefits of a multimodal analgesic approach. We found that pediatric patients who received perioperative IV ketorolac in addition to opioids reported statistically significantly lower mean pain intensity (n = 134, mean [M] = 2.9, standard deviation [SD] = 1.7) during the first 24 hours after surgery when compared with the pain intensity of patients who did not receive perioperative IV ketorolac (n = 66, M = 3.7, SD = 1.7, t = 3.14, P = .002). Patients who received perioperative IV ketorolac (M = 0.94, SD = 0.71) also received significantly fewer morphine equivalents of postoperative opioids during the first 24 hours after surgery than those who did not (M = 1.21, SD = 0.78, t = 2.41, P = .02). We will use data from these patients to introduce the potential for a personalized medicine approach to postoperative pain.

Development and validation of the Youth Acute Pain Functional Ability Questionnaire (YAPFAQ).

UNLABELLED: Physical function and functional recovery are important aspects of the acute pain experience in children and adolescents in hospitalized settings. Measures of function related to pediatric acute pain do not exist currently, limiting understanding of recovery in youth undergoing acute and procedural pain. To address this gap, we developed and assessed the clinical utility and preliminary validity of the Youth Acute Pain Functional Ability Questionnaire (YAPFAQ). We evaluated psychometric properties of this measure in 159 patients with sickle cell disease, ages 7 to 21 years, who were hospitalized for vaso-occlusive episodes at 4 urban children's hospitals. The YAPFAQ demonstrated strong internal reliability and test-retest reliability. An exploratory factor analysis was conducted to examine the preliminary factor structure and to help reduce the number of items for the final scale. Evidence for moderate construct validity was demonstrated among validated measures of pain burden, motor function, functional ability, and quality of life. The YAPFAQ is a new measure of youth functional ability in the acute pain setting. Further evaluation of this measure in additional pediatric populations is needed to understand applicability across a spectrum of youth experiencing acute pain related to illness, trauma, and medical/surgical procedures. PERSPECTIVE: Measures of function in response to acute pain are needed in order to more comprehensively evaluate acute pain interventions in pediatrics; however, no specific measures are available. Our preliminary psychometric evaluation of an acute pain functional ability measure for youth indicates that it may be a promising tool for further refinement in additional pediatric acute pain populations.

Validation of the sickle cell disease pain burden interview-youth.

UNLABELLED: The purpose of this study was to develop and validate a brief, clinically relevant, multidimensional interview to assess pain burden among children and adolescents with sickle cell disease (SCD). The Sickle Cell Disease Pain Burden Interview-Youth (SCPBI-Y) was developed using a panel of experts, patients, and caregivers. Validation was undertaken with children and youth with SCD, ages 7 to 21 years (N = 129), recruited from 4 urban children's hospitals. Participants were recruited from inpatient (n = 62) and outpatient (n = 67) settings. The SCPBI-Y demonstrated strong internal consistency reliability, cross-informant concordance (child-caregiver), and test-retest reliability (outpatient setting). Moderate construct validity was found with validated measures of functional ability, pain, and quality of life. The SCPBI-Y demonstrated construct validity using a contrasted group approach between youth in inpatient versus outpatient settings and by severity of SCD symptoms, suggesting that youth in inpatient settings and with higher disease severity exhibited greater pain burden. Discriminant validity was found between SCPBI-Y and mood. Our preliminary findings suggest that the SCPBI-Y is a valid and reliable multidimensional interview that can be used in different clinical settings to evaluate pain burden among children and adolescents with SCD. PERSPECTIVE: Multifaceted pain assessments are salient in providing optimal care to children and adolescents with SCD; however, current evaluations are lengthy and cumbersome to administer clinically. The current study introduces and validates a brief, clinically useful multidimensional interview to evaluate pain burden specific to youth with SCD.