OBJECTIVE: To determine whether differences exist between children with complex regional pain syndrome (CRPS) who identify an inciting physical traumatic event (group T) versus those without such history (group NT).

METHODS: We performed a single-center, retrospective study of children diagnosed with CRPS, 18 years old or younger, presenting between April 2008 and March 2021 and enrolled in a patient registry. Abstracted data included clinical characteristics, pain symptoms, Functional Disability Inventory, psychological history, and Pain Catastrophizing scale for children. Charts were reviewed for outcome data.

RESULTS: We identified 301 children with CRPS, 95 (64%) reported prior physical trauma. There was no difference between the groups regarding age, sex, duration, pain level, function, psychological symptoms, and scores on the Pain Catastrophizing Scale for Children. However, those in group T were more likely to have had a cast (43% vs 23%, P < 0.001). Those in group T were less likely to experience complete resolution of symptoms (64% vs 76%, P = 0.036). There were no other outcome differences between the groups.

DISCUSSION: We found minimal differences in children with CRPS who report a prior history of physical trauma to those who do not. Physical trauma may not play as significant a role as immobility, such as casting. The groups mostly had similar psychological backgrounds and outcomes.

OBJECTIVES: Using an electronic health record (EHR)-enabled pediatric lupus registry, we evaluated high-quality care delivery in the context of provider goal-setting activities and a multidisciplinary care model. We then determined associations between care quality and prednisone use among youth with systemic lupus erythematosus (SLE).

METHODS: We implemented standardized EHR documentation tools to auto-populate a SLE registry. We compared pediatric lupus care index (p-LuCI) performance (range 0.0-1.0; 1.0 representing perfect metric adherence) and timely follow-up a) before vs. during provider goal-setting activities and population management, and b) in multidisciplinary lupus nephritis vs. rheumatology clinic. We estimated associations between p-LuCI and subsequent prednisone use, adjusted for time, current medication, disease activity, clinical features, and social determinants of health.

RESULTS: We analyzed 830 visits by 110 patients (median 7 visits/patient [IQR 4-10]) over 3.5 years. The provider-directed activity was associated with improved p-LuCI performance (adjusted β 0.05, 95%CI [0.01-0.09]; mean 0.74 vs. 0.69). Patients with nephritis in multidisciplinary clinic had higher p-LuCI (adjusted β 0.06, 95%CI [0.02-0.10]) and likelihood of timely follow-up than those in rheumatology (adjusted RR 1.27, 95%CI [1.02-1.57]). p-LuCI ≥0.50 was associated with 0.72-fold lower adjusted risk of subsequent prednisone use (95%CI [0.53-0.93]). Minoritized race, public insurance, and living in areas with greater social vulnerability were not associated with reduced care quality or follow-up, but public insurance was associated with higher risk of prednisone use.

CONCLUSION: Greater attention to quality metrics associates with better outcomes in childhood SLE. Multidisciplinary care models with population management may additionally facilitate equitable care delivery. This article is protected by copyright. All rights reserved.

OBJECTIVES: Using an electronic health record (EHR)-enabled pediatric lupus registry, we evaluated high-quality care delivery in the context of provider goal-setting activities and a multidisciplinary care model. We then determined associations between care quality and prednisone use among youth with systemic lupus erythematosus (SLE).

METHODS: We implemented standardized EHR documentation tools to auto-populate a SLE registry. We compared pediatric lupus care index (p-LuCI) performance (range 0.0-1.0; 1.0 representing perfect metric adherence) and timely follow-up a) before vs. during provider goal-setting activities and population management, and b) in multidisciplinary lupus nephritis vs. rheumatology clinic. We estimated associations between p-LuCI and subsequent prednisone use, adjusted for time, current medication, disease activity, clinical features, and social determinants of health.

RESULTS: We analyzed 830 visits by 110 patients (median 7 visits/patient [IQR 4-10]) over 3.5 years. The provider-directed activity was associated with improved p-LuCI performance (adjusted β 0.05, 95%CI [0.01-0.09]; mean 0.74 vs. 0.69). Patients with nephritis in multidisciplinary clinic had higher p-LuCI (adjusted β 0.06, 95%CI [0.02-0.10]) and likelihood of timely follow-up than those in rheumatology (adjusted RR 1.27, 95%CI [1.02-1.57]). p-LuCI ≥0.50 was associated with 0.72-fold lower adjusted risk of subsequent prednisone use (95%CI [0.53-0.93]). Minoritized race, public insurance, and living in areas with greater social vulnerability were not associated with reduced care quality or follow-up, but public insurance was associated with higher risk of prednisone use.

CONCLUSION: Greater attention to quality metrics associates with better outcomes in childhood SLE. Multidisciplinary care models with population management may additionally facilitate equitable care delivery. This article is protected by copyright. All rights reserved.

<p><strong>Objectives: </strong>Our understanding of brain fog, or dyscognition, among youth with juvenile fibromyalgia syndrome is limited. We aimed to determine the prevalence of subjective (self-reported) and objective dyscognition, as well as factors associated with subjective dyscognition in juvenile fibromyalgia syndrome.</p>

<p><strong>Methods: </strong>A cross-sectional cohort study of patients ( = 31) 12-17 years old diagnosed with primary juvenile fibromyalgia syndrome and one of their parents from 2017 to 2019. Subjects completed a series of survey measures and patients completed a brief neurocognitive battery. Subjective dyscognition was determined based on scores on the Pediatric Quality of Life Inventory (PedsQL) Cognitive Functioning Scale and Behavior Rating Inventory of Executive Function (BRIEF-2) global executive composite (GEC). Objective dyscognition was defined as impairment of more than two standard deviations in any of the neurocognitive domains. We used Fisher's exact test or Wilcoxon rank-sum test, as appropriate, to compare clinical patients based on the presence of dyscognition. Multivariable logistic regression modeling was performed to determine factors associated with subjective dyscognition.</p>

<p><strong>Results: </strong>Of the 31 subjects, 65% reported subjective dyscognition and 39% had objective dyscognition, primarily in the domains of psychomotor speed (23%), executive function (23%), and attention (3%). Subjective dyscognition was not indicative of objective dyscognition. Subjective dyscognition was independently associated with functional disability (OR: 1.19 [95% CI: 1.02-1.40]) and anxiety (OR: 1.12 [95% CI: 1.02-1.24]).</p>

<p><strong>Discussion: </strong>Adolescents with fibromyalgia predominantly experience subjective dyscognition but more than 1/3 also experience objective dyscognition. Future research should explore the impact of interdisciplinary rehabilitation programs on the treatment of dyscognition in youth with JFMS.</p>

<p><strong>BACKGROUND: </strong>While the general relationship between ACEs and the development of chronic pain has become increasingly clear, how ACEs may shape a child's clinical presentation with regards to chronic pain has yet to be fully expounded. We aimed to determine the association between ACEs and clinical manifestations of pediatric chronic pain and explore the interaction of ACEs and pediatric rheumatic disease among youth with chronic pain on health-related outcomes.</p>

<p><strong>METHODS: </strong>We conducted a cross-sectional cohort study of patients aged ≤18 years with chronic pain seen in a pediatric rheumatology amplified pain clinic between August 2018 and July 2020. We stratified subjects into three groups: no ACEs, one ACE, and ≥ 2 ACEs. We assessed clinical signs and symptoms associated with the presence of ACEs using Chi-square or Wilcoxon-rank test. The association between ACEs as well as other variables of interest with functional impairment was tested using simple and multivariable linear regression.</p>

<p><strong>RESULTS: </strong>Of the 412 patients included, more than 75% of patients reported at least one ACE. Most frequent included history of mental illness in a first degree relative (56%) and parental divorce or separation (20%). Those with ≥2 ACEs had more somatic symptoms, worse functional disability, and a higher proportion of mental health conditions. There appeared to be a dose dependent interaction between ACEs and functional disability from co-morbid rheumatologic disease. In multivariable regression, higher verbal pain score, symptom severity score (SSS), and presence of autonomic changes were associated with estimated average increase in FDI score (β = 1.05, 1.95 and 4.76 respectively; all p&nbsp;&lt; 0.01).</p>

<p><strong>CONCLUSION: </strong>Children with chronic pain and/or rheumatologic diseases who are exposed to ACEs are at increased risk of greater symptomatology, functional disability, and somatization of symptoms. Our findings indicate an ongoing need for systemic evaluation of ACEs in children with chronic pain and/or rheumatic disease and incorporation of trauma-based care.</p>

<p><strong>BACKGROUND: </strong>During the Coronavirus disease 2019 pandemic, ambulatory pediatric rheumatology healthcare rapidly transformed to a mainly telehealth model. However, pediatric patient and caregiver satisfaction with broadly deployed telehealth programs remains largely unknown. This study aimed to evaluate patient/caregiver satisfaction with telehealth and identify the factors associated with satisfaction in a generalizable sample of pediatric rheumatology patients.</p>

<p><strong>METHODS: </strong>Patients with an initial telehealth video visit with a rheumatology provider between April and June 2020 were eligible. All patients/caregivers were sent a post-visit survey to assess a modified version of the Telehealth Usability Questionnaire (TUQ) and demographic and clinical characteristics. TUQ total and sub-scale (usefulness, ease of use, effectiveness, satisfaction) scores were calculated and classified as "positive" based on responses of "agree" or "strongly agree" on a 5-point Likert scale. Results were analyzed using standard descriptive statistics and Wilcoxon signed rank testing. The association between demographic and clinical characteristics with TUQ scores was assessed using univariate linear regression.</p>

<p><strong>RESULTS: </strong>597 patients/caregivers met inclusion criteria, and the survey response rate was 42% (n = 248). Juvenile idiopathic arthritis was the most common diagnosis (33.5%). The majority of patients were diagnosed greater than 6 months previously (72.6%) and were prescribed chronic medications (59.7%). The median total TUQ score was 4 (IQR: 4-5) with positive responses in 81% of items. Of the subscales, usefulness scores were lowest (median: 4, p &lt; 0.001). Telehealth saves time traveling was the highest median item score (median = 5, IQR: 4-5). Within subscales, items that scored significantly lower included convenience, providing for needs, seeing rheumatologist as well as in person, and being an acceptable way to receive rheumatology services (all p &lt; 0.001). There were no significant demographic or clinical features associated with TUQ scores.</p>

<p><strong>CONCLUSIONS: </strong>Our results suggest telehealth is a promising mode of healthcare delivery for pediatric rheumatic diseases but also identifies opportunities for improvement. Innovation and research are needed to design a telehealth system that delivers high quality and safe care that improves healthcare outcomes. Since telehealth is a rapidly emerging form of pediatric rheumatology care, improved engagement and training of patients, caregivers, and providers may help improve the patient experience in the future.</p>

<p><strong>PURPOSE: </strong>To examine the validity of International Classification of Diseases, 10th Revision, (ICD-10) code-based algorithms for herpes zoster (HZ) in the electronic medical record (EMR) of a large, integrated pediatric healthcare network and to examine baseline demographics and chronic comorbidities associated with HZ in a representative pediatric population.</p>

<p><strong>METHODS: </strong>We reviewed the electronic charts of all patients with a single ICD-10 for HZ (B02.xx) as their primary or secondary diagnosis in the EMR of the Children's Hospital of Philadelphia (CHOP) healthcare network from January 2010 - March 2019. The positive predictive value (PPV) for a single code for HZ was calculated and alternative algorithms were examined to determine which method resulted in the highest PPV.</p>

<p><strong>RESULTS: </strong>The PPV for a single ICD-10 code was 91.7% (95% CI 80.8-95.4) for definitive and/or probable cases of HZ and 63.9% (95% CI 53.4-75.5%) for definitive cases alone. Adding a prescription for an antiviral did not improve the PPV. However, adding a new code for rash entered within 1 week of the HZ code increased the PPV to 100% for definitive and/or probable cases but with substantial loss of sensitivity. A high proportion of children with HZ who required inpatient hospitalization had chronic disease (70%) and were on systemic immunomodulatory therapy (50%).</p>

<p><strong>CONCLUSIONS: </strong>HZ can be identified with a high PPV in electronic medical records of children using ICD-10 code alone. These findings lay the foundation for future pharmacoepidemiologic research to better understand risk factors for HZ infection.</p>

<p>Psychosocial and supportive care interventions are a cornerstone of palliative care science, yet there is little published guidance regarding how to develop, test, adapt, and ultimately disseminate evidence-based interventions. Our objective was to describe the application of a single intervention-development model in multiple populations of patients with serious illness. Specifically, we use the "Promoting Resilience in Stress Management" (PRISM) intervention as an exemplar for how the Obesity Related Behavioral Intervention Trials (ORBIT) intervention-development model may be applied to: (1) create an initial palliative care intervention; (2) adapt an existing intervention for a new patient-population; (3) expand an existing intervention to include new content; and, (4) consider dissemination and implementation of a research-proven intervention. We began by identifying key psychological and social science theories and translating them a testable clinical hypothesis. Next, we conducted observational studies and randomized trials to design, refine, and standardize PRISM within unique patient-populations. We moved backwards in the ORBIT model when necessary to adapt or expand PRISM content and delivery-strategies to meet patient-reported needs. Finally, we began to explore PRISM's effectiveness using Dissemination and Implementation research methods. Key lessons include the need to ground intervention-development in evidence-based theory; involve patient, clinician, and other stakeholders at every phase of development; "meet patients where they are at" with flexible delivery strategies; invest in the time to find the right scientific premise and the right intervention content; and, perhaps most importantly, involve an interdisciplinary research team.</p>

<p><strong>BACKGROUND: </strong>Disordered eating and chronic pain often co-occur in adolescents, but the relationship between these conditions is not well understood. We aimed to determine the prevalence of and to identify the clinical characteristics associated with the presence of disordered eating among adolescents with chronic musculoskeletal pain (CMP) presenting to a pediatric rheumatology subspecialty pain clinic.</p>

<p><strong>METHODS: </strong>This was a retrospective cohort study of pediatric patients presenting to a pediatric rheumatology subspecialty pain clinic for an initial consultation from March 2018 to March 2019. We complemented data from an existing patient registry with secondary chart review for patients identified with disordered eating. We compared patient characteristics based on the presence or absence of disordered eating among adolescents with CMP. Logistic regression modeling was used to determine factors associated with disordered eating.</p>

<p><strong>RESULTS: </strong>Of the 228 patients who were seen for an initial consultation in the pain clinic in 1 year, 51 (22.4%) had disordered eating. Only eight (15.7%) of the 51 patients identified with disordered eating had a previously documented formal eating disorder diagnosis. Through multivariate logistic regression modeling, we found that disordered eating was associated with older age, higher functional disability, presence of abdominal pain, presence of gastrointestinal comorbidities, and presence of anxiety (all p&nbsp;&lt; 0.05).</p>

<p><strong>CONCLUSIONS: </strong>Adolescents with chronic pain, especially those who experience gastrointestinal issues, anxiety, and greater functional disability, should be evaluated for disordered eating by the treating clinician in order to ensure timely and appropriate treatment.</p>

<p><strong>BACKGROUND: </strong>To characterize suicidality among youth with juvenile fibromyalgia syndrome (JFMS) receiving treatment from pediatric rheumatologists at a tertiary care center in order to determine the prevalence of suicidality in JFMS and to explore risk factors for persistent suicidal ideation.</p>

<p><strong>METHODS: </strong>We performed a cross-sectional cohort study of children 12-17 years old with JFMS seen in a specialty pediatric rheumatology pain clinic from 7/2017-9/2019. All subjects completed patient-reported outcomes measures, complemented by retrospective chart review. Subjects who endorsed item 8 on the Children's Depression Inventory, 2nd Edition (CDI-2) were categorized as endorsing suicidal ideation. We assessed for differences between the suicidal and non-suicidal patients using Wilcoxon-rank sum test. Logistic regression modeling was performed to identify psychosocial factors associated with suicidality.</p>

<p><strong>RESULTS: </strong>Of the 31 subjects, more than one-quarter endorsed suicidality. Nearly 90% of teens with suicidal ideation were established in outpatient counseling. In bivariate analyses, suicidality was associated with lower resilience and greater depression and anxiety (all p &lt; 0.05). Pain intensity trended towards a statistically significant positive association (OR: 1.16 [0.99-1.37]; p = 0.06). Lower resilience was independently associated with suicidality (OR: 0.90 [95% CI: 0.82-0.98]; p &lt; 0.02).</p>

<p><strong>CONCLUSIONS: </strong>Suicidality was prevalent among youth with JFMS and persistent despite concurrent receipt of mental health services. Higher patient-level resilience was independently associated with a reduced odds of suicidality. Future work should examine the role of resilience training on reducing psychological distress and mitigating the risk of suicidality in JFMS.</p>