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Aimee K Hildenbrand,1– 3 Christina M Amaro,1,4 Benjamin Bear,1 Catherine M Soprano,3,5 Katherine S Salamon2,3 1Center for Healthcare Delivery Science, Nemours Children’s Health, Wilmington, DE, USA; 2Division of Behavioral Health, Nemours Children’s Hospital Delaware, Wilmington, DE, USA; 3Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, PA, USA; 4Rutgers Cancer Institute of New Jersey, New Brunswick, NJ, USA; 5Division of Diagnostic Referral, Nemours Children’s Hospital Delaware, Wilmington, DE, USACorrespondence: Aimee K Hildenbrand, Nemours Center for Healthcare Delivery Science, 1600 Rockland Road, RC-1, Suite 160, Wilmington, DE, 19803, USA, Tel +1 302 298 7874, Email Aimee.Hildenbrand@nemours.orgPurpose: We examine referral sources and clinical characteristics for youth presenting to an outpatient interdisciplinary pediatric chronic pain program.Patients and Methods: Referral data were extracted from the electronic health record. PROMIS Pediatric Anxiety and Pain Interference Scales were administered at an initial evaluation visit.Results: The program received 1488 referrals between 2016 and 2019, representing 1338 patients, with increasing volume of referrals over time. Referrals were primarily from orthopedics (19.6%), physical medicine and rehabilitation (18.8%), neurology (14.4%), and rheumatology (12.6%). Patients referred were primarily female (75.4%), White (80.1%), English-speaking (98.4%) adolescents (median=15.0 years). Of those referred, 732 (54.7%) attended an interdisciplinary evaluation (ie, with ≥ 2 disciplines). Adolescent anxiety was within the expected range by self-report (N=327, MT-score=55.67) and parent proxy-report (N=354, MT-score=57.70). Pain interference was moderately elevated by self-report (N=323, MT-score=61.52) and parent proxy-report (N=356, MT-score=64.02). There were no differences between patients referred who attended versus did not attend an interdisciplinary evaluation based on age, sex, ethnicity, or language. A smaller than expected proportion of referred Black patients (44%, P=0.02) and patients referred from orthopedics (40%) or pulmonology (11%) attended an evaluation, whereas a larger than expected proportion of those referred from physical medicine and rehabilitation (78%) were evaluated (P< 0.001).Conclusion: Results highlight the demand for outpatient interdisciplinary pediatric chronic pain treatment. Findings can inform decisions related to staffing and service design for pediatric hospitals that aim to establish or grow outpatient pediatric chronic pain programs.Keywords: chronic pain, interdisciplinary, pediatric, referral, treatment

Inadequately managed pain has immense negative impacts on children, families, health care systems, and societies. Historically and presently, inadequately treated pain disproportionally affects marginalized communities. Deficiencies in pain education for health care providers are widely recognized as a leading contributor to poorly managed pain. Existing training for providers prioritizes physiological systems and pharmacological interventions for pain, despite decades of evidence supporting the biopsychosocial model and interdisciplinary treatment of pain. Moreover, education for health care providers rarely acknowledges the role of bias, prejudice, and systemic racism in perpetuating disparities in pain care. To address this gap, we sought to develop an innovative curriculum for health care teams to combat racial injustice related to pain management. This curriculum was developed and refined collaboratively with community partners representing diverse expertise, including lived experiences of pain, interdisciplinary pain management, cultural humility and authentic allyship, and curriculum development and evaluation. Four modules delivered across 1 to 2 hours were developed and pilot-tested extensively with multidisciplinary providers across a large pediatric health system. Learner feedback indicated high acceptability and informed iterative changes to the curriculum. Additional research is needed to examine impacts of the curriculum on health care provider knowledge and behavior (eg, clinical decision-making) and patient-reported outcomes as well as to test dissemination and implementation strategies. PERSPECTIVE: We present the development and evaluation of a curriculum for health care professionals to combat racial injustice in pain management. By engaging diverse community partners, using design thinking, applying an antiracist lens, and designing for dissemination, we aim to equip the next generation of providers to deliver equitable pain care., (Copyright © 2024 United States Association for the Study of Pain, Inc. Published by Elsevier Inc. All rights reserved.)

Background: There are many nonpharmacological pain management services available to hospitalized youth; however, not all youth are offered these services. Lack of knowledge about resources, difficulty with the referral process, and lack of understanding about nonpharmacological pain management services and when to refer patients are among the main reasons for lack of utilization. Quality improvement (QI) initiatives have grown within hospital settings and can serve to create change in fast-paced environments. Methods: The current QI project aimed to pilot an educational program to increase the use of nonpharmacological pain management interventions. Staff located on one floor of a pediatric hospital on the East Coast were selected because of the wide range of patient presentations and likelihood that these youth may present with pain during the hospitalization. Following several incremental changes and multiple PDSA cycles, utilization of nonpharmacological pain management services was assessed. Results: Education only did not result in increases in nonpharmacological pain management services ordered. A best practice alert for nursing staff, implemented within the electronic medical record, led to a 50% increase in services ordered. Conclusions: These results suggest that to improve use of nonpharmacological pain management strategies, hospital systems may need to consider more than education.

The post-acute sequelae of COVID-19 (PASC) is a complex condition. While there are emerging studies on its effects in adults, there is scarce research regarding the long-term effects of COVID-19 infection among youth. Several researchers have likened long-haul COVID-19 to chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and postural orthostatic tachycardia syndrome (POTS). In adults, the prognosis for these diagnoses is less promising than that in youth; however, there is currently very little information available on the presentation of youth with PASC. A better understanding of the specific symptom presentation for youth diagnosed with PASC is necessary. Retrospective chart reviews were conducted collecting demographic data, COVID-19 symptoms and disease progression, and vaccination status. Additional data on referrals to a PASC treatment program and appointments attended were collected. Overall, data suggested that youth present with less severe PASC symptoms than adults, and the role of vaccination is unclear. These youth are often not referred to treatment programs. More exploration is necessary to continue to build an understanding of how best to aid youth diagnosed with PASC.

Objectives: Intensive interdisciplinary chronic pain treatment programs have demonstrated that pain acceptance predicts positive treatment outcomes, but limited research has focused on less-intensive programs. This study aimed to examine associations between changes in pain acceptance and pain interference among youth participating in an outpatient interdisciplinary chronic pain treatment program., Design: Youth presenting to an evaluation within an interdisciplinary outpatient pediatric chronic pain program completed questionnaires at initial program evaluation (T1) and three months later (T2)., Main Outcome Measures: Youth ( N  = 94, M age = 14.59 years, 74% female) completed the Chronic Pain Acceptance Questionnaire, Adolescent Version (CPAQ-A) and PROMIS Pediatric Pain Interference scale., Results: Pain acceptance increased significantly from T1 to T2 ( p =.001), driven primarily by activity engagement ( p =.001). Pain interference decreased from T1 to T2 ( p <.001). Improvements in acceptance were strongly associated with reductions in interference ( p <.001). An exploratory cross-lagged structural equation model revealed a number of direct and indirect effects between pain acceptance and pain interference at T1 and T2., Conclusion: Pain acceptance and interference improved after three months in an outpatient chronic pain treatment program. Improvements in acceptance were strongly related to reductions in interference. Future research should examine these relationships over longer periods, in larger samples.

Objective: Headaches are common among youth and are associated with significant negative outcomes. Despite advances in interdisciplinary treatments for youth with chronic pain, research suggests disparities in access to these services., Methods: A total of 186 youth (M = 14.19 years old, 70.8% female) presenting to a neurology appointment at a children's hospital system were screened using the Pediatric Pain Screening Tool (PPST), a brief, validated measure to identify youth that may benefit from additional pain management services., Results: Two-thirds of participants (n = 124, 66.7%) screened as medium or high risk on the PPST. Risk categorization did not vary by patient age or sex. A greater proportion of Hispanic/Latino patients were categorized as low-risk relative to non-Hispanic/Latino patients (55.6% vs. 30.1%), and a somewhat lower proportion of patients of color were categorized as medium-risk relative to White patients (14.0% vs. 30.5%). Three-quarters (n = 94, 75.8%) of patients who were screened as medium or high risk were not referred for any additional pain management services. Referrals did not vary by patient age or ethnicity. While not statistically significant, a lower proportion of males received referrals at both medium (8.3% vs. 17.6%) and high levels of risk (15.8% vs. 34.5%), and a greater proportion of youth of color who screened as medium risk received referrals relative to White youth categorized as medium risk (37.5% vs. 10.3%)., Conclusion: Future research should continue to explore factors influencing decision-making regarding referral to specialized pain management services for youth with headache., (© The Author(s) 2021. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Youth with chronic pain and youth who have experienced stressors are at risk for poor outcomes; however, little is known about the intersection of pain and stressors. This study aims to understand the prevalence of stressors among youth with chronic pain and the relationship between stressors and pain-related outcomes. Seven hundred and seventy youth with chronic pain aged 8-18 (M age = 14.15 years, 70% female) reported pain characteristics, stressors, anxiety, disability, and quality of life. Most participants (82%) endorsed at least one stressor. A greater number of stressors was significantly related to greater anxiety and disability, and lower levels of quality of life. School stressors were significantly associated with functional disability; family, school, and peer stressors were significantly associated with anxiety and quality of life. Stressors are common in youth with chronic pain, and the presence of stressors is related to greater functional impairment. The results of this preliminary study using semi-structured clinical interviews suggest the importance of developing a validated measure that encompasses a wide variety of stressors for youth with pain. Future research on patient-reported stressors, relative intensity, and impact are needed.

Recurrent pain is a common experience in childhood and adolescence and can result in significant disability in youth, including poor quality of life, school absences, and reduced social activities. Evidence has linked adolescent risk and resilience factors with treatment outcomes. However, less research has focused on examining risk and resilience factors that may influence or predict adolescents' compliance to treatment within an interdisciplinary pediatric chronic pain management program. Participants included 64 adolescents ( M = 15.00 ± 1.69 years); 85.9% female, 84.4% Caucasian who presented to an initial evaluation in an interdisciplinary pediatric pain management program with their caregiver. Youth completed a series of questionnaires at the initial evaluation targeting pain acceptance, self-efficacy, pain catastrophizing, parental responses, pain intensity, and functional disability. Treatment compliance was measured at 3 and 6 months post-intake. Findings indicated that higher levels of adolescent-reported self-efficacy predict decreased treatment session attendance, whereas lower levels of acceptance and parental encouragement/monitoring of symptoms predict increased treatment compliance overall. Several adolescent-reported risk factors were associated with increased functional impairment among this sample. Results highlight the unique importance of risk and resilience factors within the developmental context of adolescence, while also emphasizing the need for further investigation of other relevant influences towards treatment compliance and functional impairment.

The purpose of this study is to examine prevalence rates of pain reports in youth with type 1 diabetes mellitus (T1DM) and potential predictors of pain. Pain is a common and debilitating symptom of diabetic polyneuropathies. There is currently little research regarding pain in youth with T1DM. It was predicted that self-care and general health factors would predict pain as suggested by the general pain literature. Participants (N = 269) ranged in age from 13 to 17 years; youth had a mean time since diagnosis of 5.8 years. Data collected included diabetes self-management variables, ratings of the patient's current functioning and pain intensity ('current'), and information collected about experiences that occurred in the time preceding each appointment ('interim'). About half of the youth (n = 121, 49.0%) reported any interim pain across both appointments. Female adolescents and those individuals who were physically active and/or utilized health-care system more acutely were more likely to report interim central nervous system pain. Improved diabetes self-management and increased level of physical activity may reduce experiences of pain and increase the quality of life of youth with T1DM. Regular monitoring of both current and interim pain experiences of youth with T1DM is recommended., (© The Author(s) 2013.)

The primary aim of the current study was to provide preliminary data on the feasibility, acceptability, and safety of alignment-based yoga for youths with chronic headaches. A secondary aim was to provide preliminary estimates of yoga's ability to improve headache pain, daily functioning, quality of life, and anxiety level in this population. The yoga intervention consisted of 8 weekly, 75-minute classes. Participant flow data revealed challenges to feasibility primarily due to recruitment and retention. Scores on most outcome measures changed in the predicted direction with medium effect sizes found for the functional outcomes. Pain measures did not change significantly. This pilot suggests that yoga for pediatric headaches may be acceptable, as indicated by positive parent and participant ratings of the yoga experience. These preliminary findings suggest that yoga trials for pediatric headaches include both challenges and promise. Recommendations for overcoming challenges include designs that optimize family convenience., (Copyright © 2014 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.)

For decades, nurses (RNs) have identified barriers to providing the optimal pain management that children deserve; yet no studies were found in the literature that assessed these barriers over time or across multiple pediatric hospitals. The purpose of this study was to reassess barriers that pediatric RNs perceive, and how they describe optimal pain management, 3 years after our initial assessment, collect quantitative data regarding barriers identified through comments during our initial assessment, and describe any changes over time. The Modified Barriers to Optimal Pain Management survey was used to measure barriers in both studies. RNs were invited via e-mail to complete an electronic survey. Descriptive and inferential statistics were used to compare results over time. Four hundred forty-two RNs responded, representing a 38% response rate. RNs continue to describe optimal pain management most often in terms of patient comfort and level of functioning. While small changes were seen for several of the barriers, the most significant barriers continued to involve delays in the availability of medications, insufficient physician medication orders, and insufficient orders and time allowed to pre-medicate patients before procedures. To our knowledge, this is the first study to reassess RNs' perceptions of barriers to pediatric pain management over time. While little change was seen in RNs' descriptions of optimal pain management or in RNs' perceptions of barriers, no single item was rated as more than a moderate barrier to pain management. The implications of these findings are discussed in the context of improvement strategies., (Copyright © 2014 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.)

Typically, pain is measured by intensity and sensory characteristics. Although intensity is one of the most common dimensions of pain assessment, it has been suggested that measuring pain intensity in isolation is only capturing part of the pain experience and may not lead to an accurate measurement of how pain impacts a child's daily functioning. The current study aimed to develop a measure that would capture pain intensity along with frequency and duration in a clinical sample of youth diagnosed with chronic pain. The pain-frequency-severity-duration (PFSD) scale was developed and data were collected from a multidisciplinary pain clinic at a large, midwestern children's hospital. Validated measures of functional limitations and health related quality of life were also collected. Significant correlations were found between the PFSD composite score, functional limitations, and health related quality of life. Future research should continue to evaluate this questionnaire utilizing other validated pain measures and other areas potentially impacted by chronic pain and with more diverse samples. This initial finding suggests that the PFSD is a convenient self-reported measure and is strongly related to health related quality of life and functional disability.

Context: It is estimated that 1 in 5 children in the United States is affected by chronic pain. Increasing adaptive coping strategies and decreasing stress may be important in treatment. Research has suggested that mindfulness can help alleviate symptoms associated with medical illnesses and increase quality of life. Little is known about the effectiveness of mindfulness-based stress reduction (MBSR) in youth, partly due to insufficient methodological rigor in related studies., Objective: The primary purpose of the present study was to examine the feasibility, acceptability, and effectiveness of MBSR for a treatment-seeking sample of youth with chronic pain., Design: The current study was the first randomized, controlled pilot study of MBSR for pediatric chronic pain. The research team had intended to use block randomization involving a total of five recruitment waves, with each wave consisting of one MBSR group and one psychoeducation group. Due to difficulties with recruitment and attrition before the start of either group, however, only MBSR was conducted at each wave after the first wave., Setting: Participants were recruited from a multidisciplinary pain clinic in a large, Midwestern children's hospital., Participants: The final sample included six adolescents between the ages of 12 and 17 y, four in the MBSR group and two in the psychoeducation group., Intervention: Weekly sessions for the MBSR group were 90 min in length and followed a structured protocol. Sessions included a review of homework, an introduction to and practice of meditation, discussion of the session, and a review of the home practice assignment. The psychoeducation group participated in six group sessions, which were based on a cognitive-behavioral model of pain, and discussion topics included the nature of chronic pain and stress management., Primary Outcome Measures: Health-related quality of life, pain catastrophizing, anxiety, functional disability, mindfulness, and treatment acceptability were all assessed pre- and postintervention as well as at follow-up., Results: Recruitment and retention difficulties were experienced. Qualitative examination of participants' scores suggested increased mindfulness but inconsistent patterns on other outcome measures., Conclusions: The research team highlighted critical challenges faced by potential researchers aiming to investigate MBSR for pediatric chronic pain, and the study provides recommendations for research and implications for clinical practice.

Objective: Research on how adolescents with type 2 diabetes mellitus (T2DM) understand and use social support is limited. Therefore, we explored how adolescents with T2DM experience and perceive social support., Methods: Adolescents with T2DM were interviewed, and data were qualitatively analyzed using Consensual Qualitative Research methodology., Results: Four themes emerged: support for nondiabetes and diabetes-specific behaviors, feelings of belonging, and disclosure. All participants expressed emotional and self-care-specific support. For some, disclosure and a sense of belonging with others who had diabetes often led to support elicitation. Participants also expressed a fear of disclosing their diabetes to others., Discussion: Adolescents with T2DM value tangible and emotional support for behaviors both related and not related to diabetes. Fear of disclosure was a typical experience with disclosure often limited to close friends and family. Recommendations for health professionals to assist adolescents in promoting appropriate disclosure and means of requesting support are discussed.

Purpose: The purpose of this study was to explore the perspectives of adolescents diagnosed with type 2 diabetes mellitus (T2DM) in terms of how youths conceptualized the effect of T2DM on daily life, adjustment to the illness, and motivation related to diabetes self-care management. The aims of the study were to gather essential information in order to develop appropriate intervention techniques and inform future studies intended to understand the psychosocial experiences of youths with T2DM., Methods: Eight adolescents diagnosed with T2DM were recruited from an outpatient pediatric diabetes clinic at a Midwestern children's hospital. A qualitative interview was developed, which was scheduled to last about 30 to 45 minutes. Data were analyzed using the consensual qualitative research methodology, wherein qualitative coders developed core ideas and themes related to the adolescent experience of T2DM., Results: Three main themes were identified, including how the youths conceptualized the impact of T2DM, adjustment to self-care, and motivation to perform self-care behaviors. Knowledge related to the cause of T2DM and adjustment to completing self-care behaviors was varied among youths. Few adolescents spoke about motivation sources, although when mentioned, it typically involved witnessing negative health consequences in family members or friends with T2DM., Conclusions: The data represent essential initial information related to youths with T2DM, which will help guide in developing future studies designed to understand the psychosocial experiences of youths with T2DM and appropriate intervention techniques. Future research that aims to increase internal and external motivation may be able to subsequently impact adherence to self-care behaviors.

Background: Pediatric summer camps are emerging as a means to increase social support and improve children's attitudes about their chronic illness. Because of the high rate of camp attendance, it may be feasible to implement interventions within that setting; however, it has yet to be determined what components of camp are beneficial., Objective: The objective of this pilot study was to determine the efficacy of a problem-solving intervention targeting disease management in improving psychosocial functioning of children with persistent asthma, over and above the benefits of participation in a pediatric summer camp., Methods: Fifty campers were randomly assigned to receive camp plus a nightly problem-solving intervention activity or camp as usual. Changes in self-reported asthma knowledge and problem-solving skills and self- and parent-reported child self- and social competence health-related quality of life were assessed thrice: before camp, on the last day of camp, and 3-months post-camp., Results: There were no significant differences between the problem-solving intervention group and the camp as usual group in change across psychosocial variables from before camp to last day of camp or before camp to 3-months post-camp. Increases in asthma knowledge and problem-solving were found 3-months post-camp when groups were combined., Conclusions: Although support was found for improvements in disease knowledge and problem-solving skills after camp participation, there were no identified benefits to the problem-solving intervention. Children with asthma who participated in camp were functioning at a high level in terms of knowledge, problem-solving, and social and self-competence, suggesting that interventions may be more effective if targeted to patients with identified problems with disease management.

The study had 2 aims---to determine the efficacy of a family-based cognitive-behavioral pain management intervention for adolescents with sickle cell disease (SCD) in (1) reducing pain and improving health-related variables and (2) improving psychosocial outcomes. Each adolescent and a family support person were randomly assigned to receive a brief pain intervention (PAIN) (n=27) or a disease education attention control intervention (DISEASE ED) (n=26) delivered at home. Assessment of primary pain and health-related variables (health service use, pain coping, pain-related hindrance of goals) and secondary psychosocial outcomes (disease knowledge, disease self-efficacy, and family communication) occurred at baseline (before randomization), postintervention, and 1-year follow-up. Change on outcomes did not differ significantly by group at either time point. When groups were combined in exploratory analyses, there was evidence of small to medium effects of intervention on health-related and psychosocial variables. Efforts to address barriers to participation and improve feasibility of psychosocial interventions for pediatric SCD are critical to advancing development of effective treatments for pain. Sample size was insufficient to adequately test efficacy, and analyses did not support this focused cognitive-behavioral pain management intervention in this sample of adolescents with SCD. Exploratory analyses suggest that comprehensive interventions, that address a broad range of skills related to disease management and adolescent health concerns, may be more effective in supporting teens during healthcare transition.

Objective: Confirmatory factor analysis was used to evaluate the factor structure of the Social Consequences of Pain (SCP) questionnaire in youth referred for specialty pain treatment. The existing four-factor structure (i.e., Positive Attention, Negative Attention, Activity Restriction, Privileges) was compared to an alternate three-factor structure merging Positive Attention and Privileges into a single scale (Favorable Consequences)., Methods: Participants were 373 youth (aged 8-18 years) with chronic pain referred to a tertiary pain clinic. Most participants presented with pain in the head, abdomen, legs, or back. Participants completed the SCP questionnaire at or before an intake appointment., Results: Both three-factor and four-factor solutions were acceptable. The three-factor solution emerged as preferable due to stronger internal consistencies., Conclusions: Findings support the validity of the SCP for the assessment of social consequences in diverse presentations of pediatric chronic pain.

Aims: Management of type 1 diabetes mellitus (T1DM) involves adherence to complex daily behaviors. Some adolescents have difficulty maintaining these regimens within social contexts due to peer pressure and apprehension about being singled out (Wysocki et al., 2003 [1]). Previous research suggests that negative social attributions have a role in adherence difficulties (Hains et al., 2006 [6]). This pilot study examined a cognitive-behavioral intervention geared towards challenging and restructuring negative thinking patterns., Methods: Ten adolescents with T1DM and HbA1c readings greater then 7.0% were recruited from a large, Midwestern Children's Hospital. The intervention consisted of a 1-h session followed by three weekly phone calls, which focused on cognitive restructuring and problem-solving training. Measures of diabetes-related stress and concerns surrounding self-care in social situations were completed by the adolescents pre- and post-intervention and at one-month follow-up., Results: A series of repeated measure ANOVAS did not reveal significant differences between pre-intervention and follow-up scores across measures., Conclusions: While there were no significant differences between pre-intervention and follow-up scores, the results highlight some important trends. Specifically, preliminary results suggest that the trends in individual scores indicate that problem-solving may be helpful for improving adherence in social situations., ((c) 2009 Primary Care Diabetes Europe. Published by Elsevier Ltd. All rights reserved.)