Perspectives on substance use among youth with chronic medical conditions and implications for clinical guidance and prevention: A qualitative study.

Increasing numbers of youth globally live with a chronic illness. These youth use alcohol and marijuana at levels equal to or greater than their healthy peers and, when using, are at elevated risk for regular or problem use and adverse consequences to their condition. Little is known about whether behavioral theories commonly invoked to explain adolescent substance use apply to this group, limiting our ability to develop, tailor and target preventive interventions. We interviewed youth ages 16-19 years in care for a chronic disease to gain knowledge of this group's perspectives on substance use risk, decision-making, and preferences for clinical guidance. Interviews were transcribed and thematically analyzed. Three principal themes emerged: first, having a chronic disease frames understanding of and commitment to health protecting behaviors and impacts decisions to avoid behaviors that carry risks for disease complications and flares; second, developmental impulses typical of adolescence can amplify an adolescent's propensity to take risks despite medical vulnerability and direct youth toward maladaptive choices to mitigate risk; and third, poor knowledge about effects of substance use on specific features of a disease shapes perceived risk and undermines health protecting decisions. Youth navigate these issues variously including by avoiding substance use at a specific time or entirely, using while cognitively discounting risks and/or adjusting treatment outside of medical advice. Their perceptions about substance use are complex and reveal tension among choices reflecting a chronic illness frame, developmental impulses, and knowledge gaps. Delivery of targeted guidance in healthcare settings may help youth navigate this complexity and connect patient-centered goals to optimize health with health protecting behavioral decisions.

Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis.

BACKGROUND: Children with Juvenile Idiopathic Arthritis (JIA) often have poor health-related quality of life (HRQOL) despite advances in treatment. Patient-centered research may shed light on how patient experiences of treatment and disease contribute to HRQOL, pinpointing directions for improving care and enhancing outcomes. METHODS: Parent proxies of youth enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry shared patient-reported outcomes about their child's HRQOL and experiences of disease and treatment burden (pain interference, morning stiffness, history of medication side effects and methotrexate intolerance). Contributions of these measures to HRQOL were estimated using generalized estimating equations accounting for site and patient demographics. RESULTS: Patients (N = 180) were 81.1% white non-Hispanic and 76.7% female. Mean age was 11.8 (SD = 3.6) years, mean disease duration was 7.7 years (SD = 3.5). Mean Total Pediatric Quality of Life was 76.7 (SD = 18.2). Mean pain interference score was 50.1 (SD = 11.1). Nearly one-in-five (17.8%) youth experienced >15 min of morning stiffness on a typical day, more than one quarter (26.7%) reported ≥1 serious medication side effect and among 90 methotrexate users, 42.2% met criteria for methotrexate intolerance. Measures of disease and treatment burden were independently negatively associated with HRQOL (all p-values <0.01). Negative associations among measures of treatment burden and HRQOL were attenuated after controlling for disease burden and clinical characteristics but remained significant. CONCLUSIONS: For youth with JIA, HRQOL is multidimensional, reflecting disease as well as treatment factors. Adverse treatment experiences undermine HRQOL even after accounting for disease symptoms and disease activity and should be assessed routinely to improve wellbeing.

Using Patient-Reported Outcome Measures to Capture the Patient's Voice in Research and Care of Juvenile Idiopathic Arthritis.

Patient-reported outcome (PRO) measures provide a valuable window into how patients with juvenile idiopathic arthritis and their parents perceive their functioning, quality of life, and medication side effects in the context of their disease and treatment. Momentum behind adoption of PRO measures is increasing as these patient-relevant tools capture information pertinent to taking a patient-centered approach to health care and research. This article reviews the clinical and research utility of obtaining PROs across domains applicable to the experience of juvenile idiopathic arthritis and summarizes available self-report and parent-proxy PRO measures. Current challenges and limitations of PRO usage are discussed.

Averting the perfect storm: addressing youth substance use risk from social media use.

Adolescents are developmentally sensitive to pathways that influence alcohol and other drug (AOD) use. In the absence of guidance, their routine engagement with social media may add a further layer of risk. There are several potential mechanisms for social media use to influence AOD risk, including exposure to peer portrayals of AOD use, socially amplified advertising, misinformation, and predatory marketing against a backdrop of lax regulatory systems and privacy controls. Here the authors summarize the influences of the social media world and suggest how pediatricians in everyday practice can alert youth and their parents to these risks to foster conversation, awareness, and harm reduction.