Publications by authors named "Alexandra C Marin"

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.

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Objective: We aimed to determine the feasibility and efficacy of online strategies to recruit parents of children with pediatric rheumatic diseases (PRDs) for research and to evaluate the degree to which known features of various rheumatic disease groups were present in the online cohort.

Methods: We studied two cohorts; the first was composed of respondents from a cross-sectional parental survey of children with PRDs contacted through patient support groups and social media platforms, and the second cohort was composed of participants from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) legacy clinical registry.

Results: In the social media cohort, 712 complete surveys were analyzed.

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Purpose: Research involving adolescent risk behaviors must balance data confidentiality with participant safety when risky behaviors are revealed. This report details a safety protocol and reports the experience of two contemporaneous studies that used it with variant safety thresholds.

Methods: We developed a safety protocol for research with adolescent patients and used it in two concurrent studies of adolescent patients, aged 14-18 years.

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The Screening to Brief Intervention (S2BI) tool was designed to identify substance use disorders in adolescents. We report the S2BI's sensitivity and specificity for identifying alcohol and cannabis use disorders (AUD and CUD) in adolescents presenting for primary care. Participants aged 14-18 ( = 517) completed an electronic survey, consisting of the S2BI, the Composite International Diagnostic Interview (CIDI), and anxiety and depression screens.

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