Development of CARRA/PReS-endorsed consensus Core and Expanded Datasets in childhood-onset systemic lupus erythematosus for international registry-based research.

OBJECTIVES: Childhood-onset systemic lupus erythematosus (cSLE), representing 15%-20% of individuals with SLE, has been difficult to study globally due to differences between registries. This initiative, supported by Childhood Arthritis Rheumatology Research Alliance (CARRA) and Paediatric Rheumatology European Society (PReS), aims to create Core and Expanded cSLE Datasets to standardise and enhance research worldwide. METHODS: 21 international cSLE experts and 4 patients participated in a Delphi process (questionnaires, 2 topic-specific focus groups and 3 virtual consensus meetings) to create 2 standardised cSLE datasets. The Core cSLE Dataset was designed to include data essential to meaningful clinical research across many settings. The Expanded cSLE Dataset was designed for centres able to consistently collect data to address broader research questions. Final data items for the Core and Expanded datasets were determined by consensus defined as >80% agreement) using an adapted nominal group technique and voting. RESULTS: The resulting Core cSLE Dataset contains 46 items, including demographics, clinical features, laboratory results, medications and significant adverse events. The Expanded cSLE Dataset adds 26 additional items and includes patient-reported outcomes. Consensus was also achieved regarding the frequency and time points for data collection: baseline, quarterly follow-up visits, annually and flare visits. CONCLUSION: Standardised Core and Expanded cSLE Datasets for registry-based international cSLE research were defined through the consensus of global experts and patient/caregiver representatives, endorsed by CARRA and PReS. These datasets incorporate disease-specific and patient-specific features, optimised for diverse settings to facilitate international collaborative research for children and adolescents with SLE worldwide.

Social complexity of a fentanyl vaccine to prevent opioid overdose conference proceedings: Radcliffe Institute for Advanced Study conference proceedings.

Despite significant public health attention and investment, hundreds of thousands of individuals have suffered fatal opioid overdose since the onset of the opioid crisis. Risk of opioid overdose has been exacerbated by the influx of fentanyl, a powerful synthetic opioid, into the drug supply. The National Institutes of Health Helping End Addiction Long-term (HEAL) Initiative is supporting the development of vaccines targeting fentanyl to protect against overdose. If successful, a vaccine would induce anti-fentanyl antibodies to sequester fentanyl (but not other opioids) in the blood, preventing fentanyl from crossing into the brain and reaching the central nervous system where it can cause overdose. Introduction of an overdose preventing strategy that relies on a vaccine to confer passive protection may be impactful. However, vaccines are poorly understood by the public and politicized. Moreover, the overdose ecosystem is complex and extends across numerous social, economic, medical, and cultural systems. As such, optimal use of a vaccine strategy to address overdose may benefit from multidisciplinary consideration of the social, ethical, and systemic factors that influence substance use and overdose that may also impact the acceptability of a fentanyl vaccine and related implementation strategies. In March 2022, Dr. Elissa Weitzman convened a two-day conference at the Harvard Radcliffe Institute for Advanced Study on the Social Complexity of a Fentanyl Vaccine to Prevent Opioid Overdose. In all, 19 professionals from diverse disciplines (medicine, psychology, history, ethics, immunology, vaccinology, communications, policy) attended the conference and led discussions that centered on population health and epidemiology, history of medicine and frameworks for understanding substance use, ethics, decision-making and attitudes, and operational issues to the question of a novel immunotherapy targeting fentanyl overdose. Participants also debated the risks and benefits of vaccine administration in response to fictional clinical case vignettes. A summary of the conference presentations and discussions follows.

Pain Interference in Juvenile Idiopathic Arthritis.

OBJECTIVE: Despite treatment advances, pain remains a serious problem for many children with juvenile idiopathic arthritis (JIA). To better understand pain in children with JIA and identify potentially modifiable factors, this study evaluated Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Pain Interference (PI) and its relationships with other pain measures and demographic, clinical, psychosocial, and functional variables. METHODS: This cross-sectional, observational, multicenter study used descriptive statistics and a mix of bivariate and multivariable analyses to describe PI and characterize relationships with other measures and variables. RESULTS: Among 355 children with JIA, 27% reported moderate or severe PI and 13.3% reported daily pain. PI correlated with other pain measures. Increasing age, decreasing disease duration, and increasing number of active joints, as well as presence of active disease, steroid treatment, and biologic treatment, were associated with greater PI. All PROMIS psychosocial and functional measures were associated with PI in the expected direction except for PROMIS Pediatric Physical Activity, which showed no association. In multivariable analyses, only PROMIS Fatigue, PROMIS Mobility, and the exploratory interaction of PROMIS Anxiety and disease-modifying antirheumatic drug treatment were significant. CONCLUSION: Moderate and severe PI was prevalent in this sample of children with JIA. PI increased with age and indicators of disease activity, but was more strongly associated with increasing fatigue and decreasing mobility. Findings support the use of PI as a short, easily administered multidimensional pain measure as part of routine clinical care. Fatigue, mobility, and disease activity should be assessed further when PI is high.

Need for strategic communications and stakeholder engagement to advance acceptability of an overdose preventing vaccine targeting fentanyl.

BACKGROUND: Fentanyl is a synthetic opioid, exposure to which has led to hundreds of thousands of overdose deaths. Novel vaccines are being developed that might protect against fentanyl overdose. Proactive attention to strategic communications and stakeholder engagement may smooth uptake of a novel vaccine given known challenges around vaccine hesitancy and concern for stigma related to substance use. METHODS: Qualitative interviews (N = 74) with a purposive sample of adolescents/young adults with opioid use disorder (OUD), family members of persons with OUD, experts in substance use treatment and harm reduction, and community members were conducted and thematically analyzed to discern attitudes toward a fentanyl vaccine, and directions for communications and engagement. RESULTS: Major themes reflected personal concerns for biomedical risk and system-level concerns for alignment and integration of an overdose preventing vaccine with prevailing beliefs about addiction and associated frameworks and philosophies for treatment and response. CONCLUSION: Acceptability and implementation of a novel fentanyl vaccine targeting overdose will need precision communications that address biomedical, moral/spiritual, and structural perspectives about the nature of addiction. Education about the purpose and limits of a fentanyl vaccine, partnerships with diverse stakeholders from throughout the opioid response ecosystem and interweaving of a vaccine strategy into comprehensive prevention and treatment are recommended.

Disease-Tailored Brief Intervention for Alcohol Use Among Youths With Chronic Medical Conditions: A Secondary Analysis of a Randomized Clinical Trial.

Importance: In the US, 25% of youths have a chronic medical condition (CMC). Alcohol use is prevalent among youths with a CMC and is associated with treatment nonadherence, simultaneous exposure to contraindicated medications, poor self-care, and elevated rates of progression to heavy and problem use by young adulthood. Preventive interventions targeting these youths are scarce and lack evidence about longer-term risk-stratified effects. Objective: To evaluate the 12-month effects of a preventive intervention for alcohol use among youths with a CMC reporting baseline no or low-risk alcohol use vs high-risk alcohol use, testing the hypothesis of no difference. Design, Setting, and Participants: This presepecified secondary analysis used data from a 2-group, parallel randomized clinical trial of the Take Good Care (TGC) intervention. Convenience samples of youths (aged 14-18 years) with a CMC, such as type 1 diabetes, juvenile idiopathic arthritis, or inflammatory bowel disease, were randomly assigned to the intervention or treatment as usual (TAU) between May 11, 2017, and November 20, 2018, and were followed up for up to 12 months. High-risk alcohol use was defined as heavy episodic (binge) alcohol use in the past 3 months and alcohol-related blackouts, injuries, vomiting, or emergency department visits in the past 12 months. Data were analyzed from September 21, 2023, to February 3, 2024. Interventions: The self-administered, tablet computer-based TGC intervention was developed with patient and expert input, and it delivers disease-tailored psychoeducational content about the effects of alcohol use on overall health, disease processes, and treatment safety and efficacy. Main Outcomes and Measures: The main outcome was self-reported frequency of alcohol use (in days) over the past 3 months, measured by a single validated question. Maximum likelihood methods incorporating all available data were used assuming data missing at random. Results: The trial included 451 participants (229 female youths [50.8%]), with a mean (SD) age of 16.0 (1.4) years. Of these youths, 410 (90.9%) participated in the 12-month follow-up. At baseline, 52 youths (11.5%) reported high-risk alcohol use. Among participants with high-risk alcohol use, the observed mean (SD) frequency of alcohol use from baseline to the 12-month follow-up decreased in the intervention group (from 6.3 [4.6] to 4.9 [4.3] days) and increased in the TAU group (from 5.5 [4.9] to 9.0 [5.8] days), with an adjusted relative rate ratio of 0.60 (95% CI, 0.38 to 0.94). There were no group differences among youths reporting no or low-risk alcohol use. Conclusions and Relevance: In this trial of a brief chronic illness-tailored preventive intervention, medically vulnerable youths with a high risk of alcohol use and harm decreased alcohol use. These findings support the use of a personalized preventive intervention with this group. Trial Registration: ClinicalTrials.gov Identifier: NCT02803567.

Which pediatric practices use substance use consultation services?

Substance use disorders (SUD) are common in adolescents and young adults, though few youth with SUD receive treatment, and rates of medication for substance use disorder treatment are much lower in youth compared to adults. Pediatric primary care could present an opportunity for youth with SUD to access medication, though pediatric providers may need support. Massachusetts has provided a substance use consultation line for pediatric providers since 2018. One large network of independent primary care practices within the state has been further supported by access to resources provided through a grant from the Substance Abuse and Mental Health Services Administration. In this paper, we describe the services provided in Massachusetts and examine whether additional resources are associated with increased use of the consultation line as a marker of provider engagement in SUD treatment.

Adolescent and Parent Perspectives on Digital Phenotyping in Youths With Chronic Pain: Cross-Sectional Mixed Methods Survey Study.

BACKGROUND: Digital phenotyping is a promising methodology for capturing moment-to-moment data that can inform individually adapted and timely interventions for youths with chronic pain. OBJECTIVE: This study aimed to investigate adolescent and parent endorsement, perceived utility, and concerns related to passive data stream collection through smartphones for digital phenotyping for clinical and research purposes in youths with chronic pain. METHODS: Through multiple-choice and open-response survey questions, we assessed the perspectives of patient-parent dyads (103 adolescents receiving treatment for chronic pain at a pediatric hospital with an average age of 15.6, SD 1.6 years, and 99 parents with an average age of 47.8, SD 6.3 years) on passive data collection from the following 9 smartphone-embedded passive data streams: accelerometer, apps, Bluetooth, SMS text message and call logs, keyboard, microphone, light, screen, and GPS. RESULTS: Quantitative and qualitative analyses indicated that adolescents and parent endorsement and perceived utility of digital phenotyping varied by stream, though participants generally endorsed the use of data collected by passive stream (35%-75.7% adolescent endorsement for clinical use and 37.9%-74.8% for research purposes; 53.5%-81.8% parent endorsement for clinical and 52.5%-82.8% for research purposes) if a certain level of utility could be provided. For adolescents and parents, adjusted logistic regression results indicated that the perceived utility of each stream significantly predicted the likelihood of endorsement of its use in both clinical practice and research (Ps<.05). Adolescents and parents alike identified accelerometer, light, screen, and GPS as the passive data streams with the highest utility (36.9%-47.5% identifying streams as useful). Similarly, adolescents and parents alike identified apps, Bluetooth, SMS text message and call logs, keyboard, and microphone as the passive data streams with the least utility (18.5%-34.3% identifying streams as useful). All participants reported primary concerns related to privacy, accuracy, and validity of the collected data. Passive data streams with the greatest number of total concerns were apps, Bluetooth, call and SMS text message logs, keyboard, and microphone. CONCLUSIONS: Findings support the tailored use of digital phenotyping for this population and can help refine this methodology toward an acceptable, feasible, and ethical implementation of real-time symptom monitoring for assessment and intervention in youths with chronic pain.

Comparing the Performance of World Mental Health Composite International Diagnostic Interview Substance Abuse Module in Adolescents to Diagnoses Made by Pediatric Addiction Medicine Specialists.

OBJECTIVES: The World Mental Health Composite International Diagnostic Interview Substance Abuse Module (WMH-CIDI-SAM) is commonly used as a criterion standard measure for substance use disorder (SUD) diagnoses, although the accuracy of this tool when used with adolescents is unknown. The objective of this study was to evaluate the agreement between SUD diagnoses for adolescents made by WMH-CIDI-SAM and those made by specialists based on Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition) ( DSM-5 ) SUD criteria during an SUD evaluation. METHODS: Adolescents aged 12 to 17 years presenting to an outpatient SUD program for youth were administered the WMH-CIDI-SAM by a trained research assistant, and results were compared with diagnoses made by experienced clinicians based on DSM-5 SUD criteria during an initial SUD evaluation. Chance-corrected concordance was estimated using the κ coefficient for the comparisons. RESULTS: The level of concordance between the WMH-CIDI-SAM interview and the clinician diagnosis based on DSM-5 SUD criteria were fair to moderate for alcohol use disorder and tobacco use disorder and poor for cannabis use disorder. Three of 11 WMH-CIDI-SAM item constructs showed poor concordance with clinician diagnosis. CONCLUSIONS: Interpreting the diagnostic criteria for SUDs, particularly cannabis use disorders, is nuanced, and the meaning of the criteria may be misunderstood by adolescents. Further evaluation of the performance of the WMH-CIDI-SAM diagnostic interview for identifying cannabis use disorders in adolescents is needed.

Substance Use and Educational Impacts in Youth With and Without Chronic Illness.

INTRODUCTION: Alcohol, cannabis, and nicotine are commonly used psychoactive substances that affect adolescent neurocognition. Little is known about the educational impacts of their use on measures of educational performance, participation and problems, especially among youth with a chronic illness who may use these substances to alleviate stress and symptoms. METHODS: Adolescents receiving general or subspecialty care were administered an electronic survey from 2016 to 2018. Data were analyzed in 2023. Using modified Poisson models, cross-sectional associations between past 12-month usage of alcohol, cannabis, and/or nicotine and educational impacts were estimated. RESULTS: Among 958 adolescents (mean age 16.0 years (SD 1.3), 564 (58.9%) female gender, 445 (46.5%) in subspecialty care), 294 (30.7%), 220 (23.0%), and 126 (13.2%) reported past 12-month use of alcohol, cannabis, and nicotine respectively, while 407 (42.5%) reported ≥1 educational impact, including recent lower grades 210 (21.9%), past 3-month truancy from school 164 (17.1%) or activities 170 (17.7%), and detention 82 (8.6%). Use of cannabis, but not other substances, was associated with negative educational impacts: lower grades (mostly C's/D's/F's), adjusted prevalence ratios [APR, (95% CI)] 1.54 (1.13-2.11); past 3-month truancy from school [2.16 (1.52-3.07)]; detention [2.29 (1.33-3.94)]. The association between cannabis use and any negative educational impact was stronger among adolescents with a chronic illness (p<0.001). CONCLUSIONS: Among adolescents, cannabis use was associated with a heightened risk of negative educational impacts, even after controlling for alcohol and nicotine use. Adolescents with chronic illness were especially likely to experience negative educational impacts. Findings underscore need for preventive interventions and messaging to reduce risks.

Parent Guidance on Alcohol Use for Youth With Chronic Medical Conditions.

PURPOSE: Youth with chronic medical conditions are vulnerable to unique alcohol-related health consequences, yet there are few prevention strategies targeting this group. Youth with chronic medical conditions parents' beliefs and provision of alcohol-related guidance have not yet been explored, which limits the development of effective family-based interventions. METHODS: We evaluated baseline surveys of youth with chronic medical conditions and their parents (n = 268 dyads) enrolled in a randomized controlled trial of a psychoeducational intervention to reduce alcohol use by youth with chronic medical conditions. Surveys evaluated youth alcohol use, parent beliefs about their child's alcohol use, and parental provision of alcohol guidance, including disease-related and disease-independent (ie, "drinking and driving") topics. Paired bivariate tests (χ 2 , Fisher exact) were used to measure associations between youth with chronic medical conditions alcohol use and parent alcohol-related beliefs and provision of alcohol-related guidance. RESULTS: In this study of 268 parent-youth dyads, many parents did not provide guidance on disease-specific topics, such as mixing alcohol with medications (47.8%) or risk of flares (37.6%). Furthermore, youth with chronic medical conditions whose parents had expectant beliefs about alcohol use (ie, alcohol use is "inevitable" or "OK with supervision") were more likely to report alcohol use (all P values <0.05). DISCUSSION: These findings suggest parent beliefs may influence youth with chronic medical conditions alcohol use. Proactive, disease-specific education from medical providers to parents of youth with chronic medical conditions may help to reduce adverse consequences of alcohol use in these vulnerable youth.

Returning Genetic Information About Risk for Alcohol Use Disorder to Adolescents: Findings of a Preliminary Qualitative Study of Precision Prevention.

Introduction: Alcohol use disorders are heritable, with genetic factors predicting approximately 50% of the risk. Returning information about genetic risk could promote avoidance of alcohol, reducing alcohol use disorder risk. This study explored attitudes toward a precision prevention model of alcohol use disorder targeting adolescents. Methods: This study conducted interviews with adolescents and adults to explore attitudes about precision prevention of alcohol use disorders. Interviews were recorded, transcribed, and thematically analyzed to identify perceptions about acceptability, salience, potential harms, and benefits. Results: Among N=13 participants (mean age 28.6 years, 7 female), 5 had undergone genetic testing, and 6 had a personal or family history of substance use disorder. Attitudes were favorable toward precision prevention of alcohol use disorders for adolescents. Perceived benefits included the potential to engage youth, motivate behavior change, protect family by sharing genetic information, and prompt insight into family problems. Perceived harms included the potential for anxiety, false sense of immunity from alcohol use disorders should genetic testing indicate no heightened risk, and experience of stigma from disclosure or breach of privacy. Conclusions: This qualitative study identified the potential harms and benefits of a precision prevention approach for addressing alcohol use disorder risk targeting adolescents, along with appreciation for the complexities of the model. Research is needed to elucidate operational, ethical, and communication strategies to advance the model.

Associations Between Patient-Reported Outcome Measures of Physical and Psychological Functioning and Willingness to Share Social Media Data for Research Among Adolescents With a Chronic Rheumatic Disease: Cross-Sectional Survey.

Background: Social media data may augment understanding of the disease and treatment experiences and quality of life of youth with chronic medical conditions. Little is known about the willingness to share social media data for health research among youth with chronic medical conditions and the differences in health status between sharing and nonsharing youth with chronic medical conditions. Objective: We aimed to evaluate the associations between patient-reported measures of disease symptoms and functioning and the willingness to share social media data. Methods: Between February 2018 and August 2019, during routine clinic visits, survey data about social media use and the willingness to share social media data (dependent variable) were collected from adolescents in a national rheumatic disease registry. Survey data were analyzed with patient-reported measures of disease symptoms and functioning and a clinical measure of disease activity, which were collected through a parent study. We used descriptive statistics and multivariate logistic regression to compare patient-reported outcomes between youth with chronic medical conditions who opted to share social media data and those who did not opt to share such data. Results: Among 112 youths, (age: mean 16.1, SD 1.6 y; female: n=72, 64.3%), 83 (74.1%) agreed to share social media data. Female participants were more likely to share (P=.04). In all, 49 (43.8%) and 28 (25%) participants viewed and posted about rheumatic disease, respectively. Compared to nonsharers, sharers reported lower mobility (T-score: mean 49.0, SD 9.4 vs mean 53.9, SD 8.9; P=.02) and more pain interference (T-score: mean 45.7, SD 8.8 vs mean 40.4, SD 8.0; P=.005), fatigue (T-score: mean 49.1, SD 11.0 vs mean 39.7, SD 9.7; P<.001), depression (T-score: mean 48.1, SD 8.9 vs mean 42.2, SD 8.4; P=.003), and anxiety (T-score: mean 45.2, SD 9.3 vs mean 38.5, SD 7.0; P<.001). In regression analyses adjusted for age, sex, study site, and Physician Global Assessment score, each 1-unit increase in symptoms was associated with greater odds of willingness to share social media data, for measures of pain interference (Adjusted Odds Ratio [AOR] 1.07, 95% CI 1.001-1.14), fatigue (AOR 1.08, 95% CI 1.03-1.13), depression (AOR 1.07, 95% CI 1.01-1.13), and anxiety (AOR 1.10, 95% CI 1.03-1.18). Conclusions: High percentages of youth with rheumatic diseases used and were willing to share their social media data for research. Sharers reported worse symptoms and functioning compared to those of nonsharers. Social media may offer a potent information source and engagement pathway for youth with rheumatic diseases, but differences between sharing and nonsharing youth merit consideration when designing studies and evaluating social media-derived findings.

The Association of Vaping With Social/Emotional Health and Attitudes Toward COVID-19 Mitigation Measures in Adolescent and Young Adult Cohorts During the COVID-19 Pandemic.

BACKGROUND: Vaping is a major health risk behavior which often occurs socially. Limited social activity during the COVID-19 pandemic contributed to worsening social and emotional health. We investigated associations among youth vaping, and reports of worsening mental health, loneliness, and relationships with friends and romantic partners (ie, social health), as well as perceived attitudes toward COVID-19 mitigation measures. METHODS: From October 2020 to May 2021, a clinical convenience sample of adolescents and young adults (AYA) reported on their past-year substance use, including vaping, their mental health, COVID-19 related exposures and impacts, and their attitudes toward non-pharmaceutical COVID-19 mitigation interventions, via a confidential electronic survey. Multivariate logistic regressions were used to estimate associations among vaping and social/emotional health. RESULTS: Of 474 AYA (mean age = 19.3 (SD = 1.6) years; 68.6% female), 36.9% reported vaping in the prior 12 months. AYA who self-reported vaping were more likely than non-vaping AYA to report worsening: anxiety/worry (81.1%; P = .036), mood (78.9%; P = .028), eating (64.6%; P = .015), sleep (54.3%; P = .019), family discord (56.6%; P = .034), and substance use (54.9%; P < .001). Participants who vaped also reported easy access to nicotine (63.4%; P < .001) and cannabis products (74.9%; P < .001). No difference in perceived change in social wellbeing was seen between the groups. In adjusted models, vaping was associated with symptoms of depression (AOR = 1.86; 95% CI = 1.06-3.29), less social distancing (AOR = 1.82; 95% CI = 1.11-2.98), lower perceived importance of proper mask wearing (AOR = 3.22; 95% CI = 1.50-6.93), and less regular use of masks (AOR = 2.98; 95% CI = 1.29-6.84). CONCLUSIONS: We found evidence that vaping was associated with symptoms of depression and lower compliance with non-pharmaceutical COVID-19 mitigation efforts among AYA during the COVID-19 pandemic.

Construct validity of Patient-Reported Outcomes Measurement Information System Paediatric measures in juvenile idiopathic arthritis and systemic lupus erythematosus: cross-sectional evaluation.

OBJECTIVES: Evaluate construct validity of Patient-Reported Outcomes Measurement Information System (PROMIS) Paediatric measures of symptoms and functioning against measures of disease activity among youth with juvenile idiopathic arthritis (JIA) or systemic lupus erythematosus (SLE). DESIGN: Cross-sectional associations among PROMIS measures and clinical metrics of disease activity were estimated. SETTING: Seven clinical sites of the Childhood Arthritis and Rheumatology Alliance (CARRA) in the USA. PARTICIPANTS: Youth aged 8-17 years enrolled in the CARRA Registry. INTERVENTION: PROMIS measures were collected and associations with clinical measures of disease activity estimated, by condition, in bivariate and multivariable analyses with adjustment for sociodemographics, insurance status, medications and disease duration. MAIN OUTCOME MEASURES: PROMIS Paediatric measures of mobility, physical activity, fatigue, pain interference, family relationships, peer relationships, depressive symptoms, psychological stress, anxiety, and meaning and purpose, and clinical metrics of disease. RESULTS: Among 451 youth (average age 13.8 years, 71% female), most (n=393, 87%) had a JIA diagnosis and the remainder (n=58, 13%) had SLE. Among participants with JIA, those with moderate/high compared with low/inactive disease had, on average, worse mobility (multivariable regression coefficient and 95% CIs) (-7.40; -9.30 to -5.50), fatigue (3.22; 1.02 to 5.42), pain interference (4.76; 3.04 to 6.48), peer relationships (-2.58; -4.52 to -1.64), depressive symptoms (3.00; 0.96 to 5.04), anxiety (2.48; 0.40 to 4.56) and psychological stress (2.52; 0.68 to 4.36). For SLE, youth with active versus inactive disease had on average worse mobility (-5.07; -10.15 to 0.01) but PROMIS Paediatric measures did not discriminate participants with active and inactive disease in adjusted analyses. CONCLUSIONS: Seven PROMIS Paediatric measures discriminated between active and inactive disease in youth with JIA. Results advance the usefulness of PROMIS for understanding well-being and improving interventions for youth with JIA, but larger studies are needed to determine utility in SLE cohorts. TRIAL REGISTRATION NUMBER: National Institute of Arthritis and Musculoskeletal and Skin Diseases (U19AR069522).

Indicators of Healthcare Transition Progress Among College Youth With Type 1 Diabetes.

OBJECTIVE: Adolescents with chronic diseases must navigate changing healthcare needs in college and beyond. This study examined the ability of college youth with type 1 diabetes (T1D) to achieve transition milestones and ascertained sociodemographic predictors of a successful healthcare transition (HCT). METHODS: College youth with T1D were recruited via social media and direct outreach to participate in a web-based study, during which they answered questions about the HCT process. Descriptive statistics and multivariable regression were used to evaluate HCT measures as a function of sociodemographic variables. RESULTS: Nearly two-thirds of participants (N = 138) had discussions with their providers about changing healthcare needs (65.9%) and transferring care to adult physicians (64.5%); less than one-third (27.9%) discussed obtaining health insurance as an adult. Females were more likely than males to discuss transitioning to adult providers (70.3% vs 40.7%, P < .01). Those covered on a parent's insurance (vs other) plan were more likely to receive help with finding adult providers (79.3% vs 44.4%, P = .04) but less likely to discuss how to obtain health insurance (25.0% vs 61.1%, P < .01). These differences persisted after adjustment. CONCLUSIONS: Improvement is needed with regard to college youth with T1D becoming autonomous managers of their own care. Gaps were found in their experiences of discussing changing healthcare needs, locating adult providers, and obtaining health insurance-especially among those who were younger, male, and not covered under parental insurance. Efforts to improve the HCT process should focus particularly on these subgroups to advance healthcare delivery in this population.

Effects of a Patient-Centered Intervention to Reduce Alcohol Use Among Youth With Chronic Medical Conditions.

PURPOSE: Alcohol poses unique risks for youth with chronic medical conditions (YCMC) yet many drink. Preventive interventions targeting YCMC are scarce. METHODS: YCMC with type 1 diabetes, juvenile idiopathic arthritis, systemic lupus erythematosus, or inflammatory bowel disease were recruited and randomized to trial the effects of a self-administered condition-tailored psychoeducational intervention on frequency in days of past 3-month alcohol use, alcohol-related risk perceptions, and knowledge. Changes in outcomes over time were measured and compared by treatment arm using multivariate mixed effects models. RESULTS: Among N = 418 participants (average age 16.0 years, 52.2% female, 84.7% white, 90.7% non-Hispanic), 24.2% reported past-year alcohol use at baseline. Alcohol-related knowledge increased overall and was greater for the intervention group (adjusted improvement in knowledge score +7.70, 95% confidence interval [CI] 2.92-12.48). By 6-month follow-up, the percentage of youth reporting any alcohol use is risky/dangerous increased among intervention arm participants from 41.5% to 45.4% at baseline and decreased from 38.9% to 37.4% among controls (adjusted intervention effect odds ratio 1.79, 95% confidence interval 1.02-3.13). Overall, frequency of drinking increased over time from 3.72 to 4.52 days on average, with no differences by treatment group. Among female drinkers, the predicted mean frequency of drinking days declined in the intervention group (4.11-3.33) and increased among controls (2.82-4.55) (adjusted intervention effect rate ratio .50, 95% confidence interval .25-.99). CONCLUSIONS: Exposure to a chronic illness-tailored psychoeducational intervention targeting alcohol use increased knowledge and perceived risk and, among females, reduced alcohol use. Promising results merit future work to optimize the model for both males and females.

Pediatric Subspecialist Alcohol Screening Rates and Concerns About Alcohol and Cannabis Use Among Their Adolescent Patients.

PURPOSE: Pediatric specialty care provides an opportunity to screen for and address patient substance use; however, little is known about providers' screening rates, their opinions regarding substance use harms, or the potential marijuana to be used as a medication. METHODS: We surveyed national convenience samples of pediatric endocrinologists (N = 142) and rheumatologists (N = 83) and used descriptive statistics and multivariate logistic regression to examine alcohol screening rates, barriers, and for medical use of marijuana, differences between subspecialist concerns. RESULTS: In all, 36.4% of providers reported screening adolescent patients annually or more, and a majority expressed concerns about impacts on disease management (80.0%/80.0%) and symptom management (69.3%/53.3%) from alcohol and marijuana, respectively. Nearly equal proportions disagreed (30.2%), were neutral (34.7%), or agreed (35.1%) that some patients would benefit from medical marijuana, although majorities were not comfortable recommending marijuana (62.7%) and did not believe marijuana is standardized enough to be used as medication (57.8%). DISCUSSION: Fewer than half of the subspecialists in our study routinely screen their adolescent patients for substance use, although many have concerns regarding the impacts of alcohol and marijuana use on their patients. Education and training on best practice could help to increase screening rates. There is agreement that marijuana is not standardized enough to be used as a medication. There is also a broad range of opinions regarding the pharmaceutical potential of marijuana and concerns about the impact of marijuana on underlying chronic medical conditions, which should be considered as marijuana policy continues to evolve.

Association of Screening and Brief Intervention With Substance Use in Massachusetts Middle and High Schools.

Importance: Screening and brief intervention (SBI) programs in schools have the potential to provide substance use prevention messages to large numbers of adolescents. This study evaluated the association between exposure to a school-based SBI program and reductions in substance use among youths after enactment of a law that required Massachusetts schools to provide SBI to all students. Objective: To estimate the association between exposure to a school-based SBI program and changes in substance use among youths. Design, Setting, and Participants: In this mixed-method quality improvement study using an effectiveness-implementation hybrid design, stakeholder interviews were conducted to describe the operations, timing, and impressions of SBI implementation at 14 intervention schools in Massachusetts. Repeated cross-sectional surveys of youths in intervention and comparison groups were administered between December 19, 2017, and May 22, 2019, to assess substance use and associated measures of perceived risk, knowledge, and adult support before and approximately 3 months after SBI implementation among exposed groups. A difference-in-differences framework was used to estimate substance use outcomes associated with SBI exposure among students in middle school (grades 7 and 8) and high school (grades 9 and 10) using adjusted overlap-weighted generalized models to account for covariate imbalance between exposed and unexposed school grades. In addition, 14 school staff members were interviewed about implementation. Exposures: Exposure vs nonexposure to a school-based SBI program. Main Outcomes and Measures: Frequency of alcohol, cannabis, and e-cigarette use (measured in days) and any binge drinking in the past 3 months. Results: Between December 2017 and May 2019, 8771 survey responses were collected from 4587 students in grades 7 through 10 who were attending one of 23 participating school districts. The median (IQR) age was 13 (13-14) years (range, 12-17 years); 2226 students self-identified as female (48.5%), 2206 (48.1%) as male, and 155 (3.4%) as transgender or preferred not to answer. Overall, 163 students (3.6%) identified their race as Asian, 146 (3.2%) as Black or African American, 2952 (64.4%) as White, and 910 (19.8%) as mixed or other race (including American Indian or Alaska Native and Native Hawaiian or Pacific Islander); 416 students (9.1%) preferred not to answer or were missing data on race. A total of 625 students (13.6%) identified their ethnicity as Hispanic and 3962 (86.4%) as non-Hispanic. Cannabis use increased over time in both the SBI group (middle school: marginal estimated probability, 0.73 [95% CI, 0.21-2.51] at baseline vs 2.01 [95% CI, 0.60-6.70] at follow-up; high school: marginal estimated probability, 2.86 [95% CI, 0.56-14.56] at baseline vs 3.10 [95% CI, 0.57-16.96] at follow-up) and the control group (middle school: marginal estimated probability, 0.24 [95% CI, 0.05-1.03] at baseline vs 3.38 [95% CI, 0.81-14.18] at follow-up; high school: marginal estimated probability, 1.30 [95% CI, 0.27-6.29] at baseline vs 1.72 [95% CI, 0.34-8.66] at follow-up). e-cigarette use also increased over time in both the SBI group (middle school: marginal estimated probability, 0.81 [95% CI, 0.22-3.01] at baseline vs 1.94 [95% CI, 0.53-7.02] at follow-up; high school: marginal estimated probability, 3.82 [95% CI, 0.72-20.42] at baseline vs 3.51 [95% CI, 0.55-22.59] at follow-up) and the control group (middle school: marginal estimated probability, 0.51 [95% CI, 0.12-2.30] at baseline vs 3.40 [95% CI, 0.72-16.08] at follow-up; high school: marginal estimated probability, 2.29 [95% CI, 0.41-12.65] at baseline vs 3.53 [95% CI, 0.62-20.16] at follow-up). Exposure to SBI was associated with a significantly smaller increase in the rate of cannabis use among middle school students (adjusted rate ratio [aRR], 0.19; 95% CI, 0.04-0.86) and significantly smaller increases in the rates of cannabis and e-cigarette use among all female students (cannabis use: aRR, 0.17 [95% CI, 0.03-0.96]; e-cigarette use: aRR, 0.16 [95% CI, 0.03-0.82]) compared with nonexposure. No other significant differences were observed among students in grades 7 and 8, and no differences were found in any comparison between groups in grades 9 and 10. Conclusions and Relevance: In this quality improvement study, exposure to a school-based SBI program was associated with a significantly smaller increase in the rate of cannabis use among middle school students and significantly smaller increases in the rates of cannabis and e-cigarette use among all female students. These findings suggest that implementation of SBI programs in schools may help to reduce substance use among middle school and female students, and further study of these programs is warranted.

A Phone Consultation Call Line to Support SBIRT in Pediatric Primary Care.

Background: Screening Brief Intervention Referral to Treatment (SBIRT) is recommended as a routine part of pediatric primary care, though managing patients with positive screens is challenging. To address this problem, the state of Massachusetts created a call line staffed by pediatric Addiction Medicine specialists to provide consultations to primary care providers and access to a behavioral health provider specially trained in managing adolescent substance use. Objective: To describe the uptake and outcomes of a consultation call line and virtual counseling for managing substance use disorders (SUD) in pediatric primary care. Methods: Service delivery data from consultations and counseling appointments were captured in an electronic database including substance, medication recommendations, level of care recommendations and number of counseling appointments completed for each patient. Summary data is presented here. Results: In all, there were 407 encounters to 108 unique families, including 128 consultations and 279 counseling visits in a one-year period. The most common substances mentioned by healthcare providers were cannabis (64%), nicotine (20%), alcohol (20%), vaping (9%) and opioids (5%). Management in primary care was recommended for 87 (68%) of the consultations. Medications for SUD treatment were recommended for 69 (54%) consultations including two for opioid use disorder. Conclusion: We found that both a statewide consultation call line and virtual counseling to support SBIRT in pediatric primary care were feasible. The majority of consultations resulted in recommendations for treatment in primary care.