Does Diagnostic Certainty Matter?: Pain-Related Stigma in Adolescents with Juvenile Idiopathic Arthritis.

OBJECTIVES: Childhood chronic pain conditions are common and vulnerable to stigma. Adolescents with chronic primary pain experience diagnostic uncertainty and describe pain-related stigma experiences across multiple social contexts. Juvenile idiopathic arthritis (JIA) is a childhood autoimmune, inflammatory condition with associated chronic pain, but with well-defined diagnostic criteria. The current study examined pain-related stigma experiences in adolescents with JIA. METHODS: Four focus groups of 3-7 adolescents with JIA (N = 16), ages 12-17 (Mage = 15.42, SD = 1.82), and parents (N = 13) were conducted to examine experiences of, and reaction to, pain-related stigma. Patients were recruited from an outpatient pediatric rheumatology clinic. Focus group length ranged from 28 to 99 minutes long. Two coders used directed content analysis resulting in 82.17% inter-rater level of agreement. RESULTS: Adolescents with JIA described pain-related stigma experiences predominantly from school teachers and peers, and less from medical providers (e.g., school nurses), and family members after a diagnosis. The primary categories that emerged were (1) Felt Stigma, (2) Internalized Stigma, (3) Anticipatory Stigma/Concealment, and (4) Contributions to Pain-Related Stigma. A common experience of pain-related stigma was the perception by others that the adolescent was too young to have arthritis. CONCLUSIONS: In common with adolescents with unexplained chronic pain, our findings indicate that adolescents with JIA experience pain-related stigma in certain social contexts. Diagnostic certainty may contribute to greater support among medical providers and within families. Future research should investigate the impact of pain-related stigma across childhood pain conditions.

Pain-Related Stigma and Its Associations With Clinical and Experimental Pain Severity in Youth With Chronic Musculoskeletal Pain Conditions.

OBJECTIVE: Many children with chronic musculoskeletal pain conditions experience stigma which can have negative downstream consequences. This study compares ratings of clinical pain (current pain intensity and pain interference), experimental pain (temporal summation, cold water tolerance, and cold pain intensity), and pain-related stigma among three groups of youth with rheumatic conditions. The relations among ratings of pain-related stigma and pain variables were explored. METHODS: Eighty-eight youth aged 8-17 years with a diagnosis of juvenile idiopathic arthritis (JIA = 32), juvenile fibromyalgia (JFM = 31), or non-specific chronic pain (NSCP = 25) completed measures of clinical pain ratings (average 7-day pain intensity, day of assessment pain (DoA), and pain interference), experimental pain (cold pain tolerance, cold pain intensity, and temporal summation of mechanical pain), and pain-related stigma. Data analysis compared pain-related stigma and pain ratings across the three groups and examined the relations among pain-related stigma and pain ratings. RESULTS: Youth with JFM reported higher ratings of clinical pain and pain-related stigma than their counterparts with NSCP or JIA. However, there were no differences in experimental pain. Pain-related stigma was associated with greater ratings of pain interference, particularly for those with JIA and NSCP. Pain-related stigma was also associated with greater average daily pain intensity but not DoA. CONCLUSION: Youth with medically unexplained pain report greater stigma and worse pain than their peers; thus, robust assessment of pain in this population is necessary. Future work should longitudinally explore the impact of pain-related stigma on pain outcomes and treatment responses.

"There's Nothing Wrong With You": Pain-Related Stigma in Adolescents With Chronic Pain.

OBJECTIVE: Adolescents with chronic pain often experience symptom disbelief and social rejection by others secondary to "medically unexplained" symptoms. Although chronic pain is common in adolescents, limited research has conceptualized these social experiences as pain-related stigma in this population. The purpose of this study was to identify and describe pain-related stigma among adolescents with chronic pain and their parents using focus group methodology. METHODS: Five adolescent focus groups (N = 18; Age M = 15.33 years, SD = 1.28) and three parent focus groups (N = 9) were conducted. Directed content analysis was used to analyze focus group transcripts. Stigma categories were developed a priori (Felt Stigma, Anticipated Stigma, Internalized Stigma, Concealment, and Controllability) and new categories emerged during analysis. Two coders reached 87.16% agreement for all groups (adolescent group: 90.34%; Parent group: 79.55%) and consensus was achieved for discordant codes. RESULTS: Adolescents and their parents endorsed pain-related stigma across all social domains. Analyses revealed four main categories for both groups (a) Felt Stigma (subcategories: pain dismissal, faking or exaggerating, and mental health stigma), (b) Anticipated Stigma and Concealment, (c) Internalized Stigma, and (d) Sources of Pain-Related Stigma (subcategories: pain invisibility, lack of chronic pain knowledge, lack of understanding, and controllability). CONCLUSIONS: Adolescents with chronic pain experience pain-related stigma from medical providers, school personnel, family members, and peers, which may have negative social and health implications. More research is needed to evaluate the link between pain-related stigma and health outcomes for adolescents with chronic pain. Clinical approaches targeting pain-related stigma are discussed.

What COVID-19 Teaches Us About Implicit Bias in Pediatric Health Care.

OBJECTIVES: To highlight the role of implicit bias in contributing to existing health disparities among pediatric populations during the coronavirus disease 2019 (COVID-19) pandemic and recommend strategies to reduce its impact. METHODS: A topical review of the recent literature on implicit bias describing its potential impact in key areas of pediatric health care within the context of COVID-19 was conducted. RESULTS: Pediatric provider implicit bias has been found to be similar to the general population and can negatively influence clinical decision-making and outcomes for marginalized youth and families, particularly under stressful conditions such as the COVID-19 pandemic. Implicit bias can be mitigated through strategies proposed at the individual, institutional/organizational, educational, and scientific/research levels. CONCLUSIONS: The additional strain on provider resources, staff, and supplies created by COVID-19 may exacerbate providers' susceptibility to implicit bias and contribute to health disparities. Pediatric psychologists are encouraged to recognize implicit biases in themselves and colleagues and promote identified strategies to reduce the impact of implicit bias on perpetuating health disparities in marginalized youth and families.

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.

Clinical Characterization of Juvenile Fibromyalgia in a Multicenter Cohort of Adolescents Enrolled in a Randomized Clinical Trial.

OBJECTIVE: Juvenile fibromyalgia (JFM) is a complex chronic pain condition that remains poorly understood. The study aimed to expand the clinical characterization of JFM in a large representative sample of adolescents with JFM and identify psychological factors that predict pain interference. METHODS: Participants were 203 adolescents (ages 12-17 years) who completed baseline assessments for the multisite Fibromyalgia Integrative Training for Teens (FIT Teens) randomized control trial. Participants completed the Pain and Symptom Assessment Tool, which includes a Widespread Pain Index (WPI; 0-18 pain locations) and Symptom Severity checklist of associated somatic symptoms (SS; 0-12) based on the 2010 American College of Rheumatology criteria for fibromyalgia. Participants also completed self-report measures of pain intensity, functional impairment, and psychological functioning. RESULTS: Participants endorsed a median of 11 painful body sites (WPI score) and had a median SS score of 9. Fatigue and nonrestorative sleep were prominent features and rated as moderate to severe by 85% of participants. Additionally, neurologic, autonomic, gastroenterologic, and psychological symptoms were frequently endorsed. The WPI score was significantly correlated with pain intensity and catastrophizing, while SS scores were associated with pain intensity and all domains of physical and psychological functioning. Depressive symptoms, fatigue, and pain catastrophizing predicted severity of pain impairment. CONCLUSION: JFM is characterized by chronic widespread pain with fatigue, nonrestorative sleep, and other somatic symptoms. However, how diffusely pain is distributed appears less important to clinical outcomes and impairment than other somatic and psychological factors, highlighting the need for a broader approach to the assessment and treatment of JFM.

Pain-related stigma as a social determinant of health in diverse pediatric pain populations.

Pediatric patients with invisible symptomology, such as chronic pain syndromes, are more likely to experience pain-related stigma and associated discrimination by others, including medical providers, peers, school personnel, and family members. The degree of this pain-related stigma may depend on several social dimensions, including observer (e.g., attentional and implicit biases) and patient characteristics (e.g., racial identity, socioeconomic stressors). In this mini-review, we introduce the concept of pain-related stigma, and the intersectionality of stigma, within the context of social determinants of health in pediatric pain populations. Stigma theory, observer attentional biases, healthcare provider implicit/explicit biases, adverse childhood experience, and psychophysiology of socio-environmental stressors are integrated. Several ethical, clinical, and research implications are also discussed. Because the study of pain-related stigma in pediatric pain is in its infancy, the purpose of this conceptual review is to raise awareness of the nuances surrounding this social construct, propose avenues through which stigma may contribute to health inequities, present frameworks to advance the study of this topic, and identify areas for further investigation.

FIT Teens RCT for juvenile fibromyalgia: Protocol adaptations in response to the COVID 19 pandemic.

Objective: To describe protocol adaptations to the Fibromyalgia Integrative Training for Teens (FIT Teens) randomized controlled trial in response to the COVID-19 pandemic. The overarching aims of the FIT Teens multi-site 3-arm comparative effectiveness trial are to assess whether a specialized neuromuscular exercise training intervention combined with cognitive-behavioral therapy (CBT) is superior to CBT alone or graded aerobic exercise alone. Design/methods: The trial was originally designed as an in-person, group-based treatment with assessments at baseline, mid- and post-treatment, and four follow-up time points. The original study design and methodology was maintained with specific modifications to screening, consenting, assessments, and group-based treatments to be delivered in remote (telehealth) format in response to COVID-19 restrictions. Results: Study enrollment was paused in March 2020 for five months to revise operations manuals, pilot remote treatment sessions for accuracy and fidelity, complete programming of REDCap assent/consent and assessment materials, train study staff for new procedures and obtain regulatory approvals. The trial was relaunched and has been successfully implemented in remote format since July 2020. Trial metrics thus far demonstrate a consistent rate of enrollment, strong attendance at remote treatment sessions, high retention rates and high treatment fidelity after protocol adaptations were implemented. Conclusions: Preliminary findings indicate that FIT Teens protocol adaptations from in-person to remote are feasible and allowed for sustained enrollment, retention, and treatment fidelity comparable to the in-person format. Methodologic and statistical considerations resulting from the adaptations are discussed as well as implications for interpretation of results upon completion of the trial.

"If It Ever Really Hurts, I Try Not to Let Them Know:" The Use of Concealment as a Coping Strategy Among Adolescents With Chronic Pain.

OBJECTIVE: Despite considerable evidence of chronic pain in adolescents, and its adverse consequences for their health and well-being, less is known about pain-related stigma that these youth face, such as pain disbelief by others. Adolescents with chronic pain may conceal their symptoms as a coping strategy to avoid pain-related stigma, contributing to further social isolation and disruptions in medical treatment. In the current study, we used focus group methodology to examine adolescent motivations for using concealment and the possible benefits and harmful consequences of this form of coping. MATERIALS AND METHODS: Five focus groups of 3-5 adolescents (ages 12-17) with chronic pain conditions (N = 18) were conducted as a part of a larger study to evaluate the impact of, and reaction to, pain-related stigma. Patients were recruited from an outpatient pediatric pain management clinic. Transcripts of focus group sessions were analyzed using directed content analysis for the main study, yielding anticipatory stigma and concealment categories. These categories were then explored using inductive content analysis for the current study. RESULTS: Adolescents described engaging in concealment of their pain symptoms. Our analysis revealed three social motivations for concealment: (1) avoidance of judgment; (2) avoidance of being a social burden; and (3) desire to be treated normally, and two harmful consequences of concealment: (1) social isolation and (2) cognitive burden. CONCLUSION: Disbelief of pain symptoms may exacerbate the social isolation and disease-related burden in this population. Clinical implications of concealing pain symptoms are discussed, and points of intervention are proposed.

Navigating Ethical Challenges for Pediatric Sickle Cell Pain Management in the Context of the Opioid Epidemic.

OBJECTIVES: The aim was to describe the impact of the opioid epidemic on pain management practices in pediatric sickle cell disease (SCD) and propose a conceptual framework for navigating ethical decision-making in pediatric sickle cell pain management. METHODS: A review of the literature on ethical challenges in the management of sickle cell pain was conducted and considered in the context of the opioid epidemic and psychosocial factors affecting youth with SCD. The Integrated Ethical Framework for Pain Management (IEFPM) was applied to pediatric sickle cell pain management using a clinical case example. RESULTS: Implicit bias, health-related stigma, and potential neurocognitive impairment all present unique challenges in ethical decision-making for youth with SCD. National guidelines for prescribing opioid medication may complicate providers' clinical decision-making and affect their sickle cell pain management practices. The IEFPM was found to be applicable to ethical decision-making for pediatric sickle cell pain and captures both patient-related and provider-related aspects of clinical pain management. DISCUSSION: The opioid epidemic has exacerbated existing ethical challenges for pain management among youth with SCD. The IEFPM provides a conceptual model that can be integrated into health care settings to facilitate ethical decision-making and promote greater health equity in the clinical management of pediatric sickle cell pain.

Conceptualizing pain-related stigma in adolescent chronic pain: a literature review and preliminary focus group findings.

INTRODUCTION: Chronic pain in adolescents is a significant medical condition, affecting the physical and psychological well-being of youth and their families. Pain-related stigma is a significant psychosocial factor in adolescents with chronic pain that has been understudied, despite its implications for negative health outcomes, poor quality of life, and increased healthcare utilization. OBJECTIVES: To examine pain-related stigma in the literature documenting pediatric and adult health-related stigma and present preliminary findings from a focus group of adolescents with chronic pain. METHODS: In this narrative review, we explored pain-related stigma research and conceptualized the literature to address pain-related stigma among adolescents with chronic pain. Additionally, we conducted a focus group of four adolescent females with chronic pain and using content analyses, coded the data for preliminary themes. RESULTS: We propose a pain-related stigma model and framework based on our review and the findings from our focus group. Findings suggest that medical providers, school personnel (ie, teachers and school nurses), peers and even family members enact pain-related stigma toward adolescents with chronic pain. CONCLUSIONS: Based on this narrative review, there is preliminary evidence of pain-related stigma among adolescents with chronic pain and future research is warranted to better understand the nature and extent of this stigma within this population.

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.

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.