PURPOSE: Family health history is often collected through single-item queries that ask patients whether their family members are affected by certain conditions. The specific wording of these queries may influence what individuals report. METHODS: Parents of Boston Children's Hospital patients were invited to participate in a Web-based survey about the return of individual genomic research results regarding their children. Participants reported whether 11 types of medical conditions affected them or their family. Randomization determined whether participants were specifically instructed to consider their extended family. RESULTS: Family health history was reported by 2,901 participants. Those asked to consider their extended family were more likely to report a positive family history for 8 of 11 medical conditions. The largest differences were observed for cancer (65.1 vs. 45.7%; P < 0.001), cardiovascular conditions (72.5 vs. 56.0%; P < 0.001), and endocrine/hormonal conditions (50.9 vs. 36.7%; P < 0.001). CONCLUSIONS: Small alterations to the way family health history queries are worded can substantially change patient responses. Clinicians and researchers need to be sensitive about patients' tendencies to omit extended family from health history reporting unless specifically asked to consider them.

Asthma and chronic obstructive pulmonary disease (COPD) are common chronic obstructive lung disorders in the US that affect over 49 million people. There is no cure for asthma or COPD, but clinical guidelines exist for controlling symptoms that are successful in most patients that adhere to their treatment plan. Health information technologies (HITs) are revolutionizing healthcare by becoming mainstream tools to assist patients in self-monitoring and decision-making, and subsequently, driving a shift toward a care model increasingly centered on personal adoption and use of digital and web-based tools. While the number of chronic pulmonary disease HITs is rapidly increasing, most have not been validated as clinically effective tools for the management of disease. Online communities for asthma and COPD patients are becoming sources of empowerment and support, as well as facilitators of patient-centered research efforts. In addition to empowering patients and facilitating disease self-management, HITs offer promise to aid researchers in identifying chronic pulmonary disease endotypes and personalized treatments based on patient-specific profiles that integrate symptom occurrence and medication usage with environmental and genomic data.

BACKGROUND: In an effort to reduce barriers to screening for alcohol use in pediatric primary care, the National Institute on Alcoholism and Alcohol Abuse (NIAAA) developed a two-question Youth Alcohol Screening Tool derived from population-based survey data. It is unknown whether this screening tool, designed for use with general populations, accurately identifies risk among youth with chronic medical conditions (YCMC). This growing population, which comprises nearly one in four youth in the US, faces a unique constellation of drinking-related risks. METHOD: To validate the NIAAA Youth Alcohol Screening Tool in a population of YCMC, we performed a cross-sectional validation study with a sample of 388 youth ages 9-18 years presenting for routine subspecialty care at a large children's hospital for type 1 diabetes, persistent asthma, cystic fibrosis, inflammatory bowel disease, or juvenile idiopathic arthritis. Participants self-administered the NIAAA Youth Alcohol Screening Tool and the Diagnostic Interview Schedule for Children as a criterion standard measure of alcohol use disorders (AUD). Receiver operating curve analysis was used to determine cut points for identifying youth at moderate and highest risk for an AUD. RESULTS: Nearly one third of participants (n = 118; 30.4%) reported alcohol use in the past year; 86.4% (106) of past year drinkers did not endorse any AUD criteria, 6.8% (n = 8) of drinkers endorsed a single criterion, and 6.8% of drinkers met criteria for an AUD. Using the NIAAA tool, optimal cut points found to identify youth at moderate and highest risk for an AUD were ≥ 6 and ≥12 drinking days in the past year, respectively. CONCLUSIONS: The NIAAA Youth Alcohol Screening Tool is highly efficient for detecting alcohol use and discriminating disordered use among YCMC. This brief screen appears feasible for use in specialty care to ascertain alcohol-related risk that may impact adversely on health status and disease management.

INTRODUCTION: Adolescence and emergent adulthood are periods of peak prevalence for substance use that pose risks for short- and long-term health harm, particularly for youth with chronic medical conditions (YCMC) who are transitioning from adolescence to adulthood. As there have been no nationally representative studies of substance use during this period for these medically vulnerable youth, the authors sought to examine onset and intensification of these behaviors for a national sample of youth with and without chronic conditions. METHODS: Longitudinal data are from 2,719 youth between the ages of 12 and 26 years interviewed from 2002 to 2011 for the Panel Study of Income Dynamics, Child Development and Transition to Adulthood Supplements, a nationally representative, population-based survey. Multivariate generalized linear mixed models were used to estimate patterns of alcohol, tobacco, and marijuana use during adolescence and emergent adulthood for youth with and without chronic conditions, adjusting for potential confounders. RESULTS: Overall, 68.8%, 44.3%, and 47.8% of youth reported ever trying alcohol, tobacco, and marijuana, respectively. Among users, 42.2%, 73.4%, and 50.3% of youth reported binge drinking, regular cigarette use, and recent marijuana use, respectively. YCMC were more likely to engage in any and heavier substance use; transition years and early adulthood were periods of peak risk for YCMC compared with their healthy peers. CONCLUSIONS: Substance use among YCMC during adolescence and emergent adulthood is a substantial concern. Increased prevention and case detection are in order to address these behaviors and promote optimal health outcomes for medically vulnerable youth.

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.

This evolving case allows learners to develop skills in the assessment, treatment, and management of youth transitioning from the pediatric to the adult medical home with an emphasis on the role of the multidisciplinary team. This case provides an opportunity for learners to explore challenges common to the clinical management of patients during this transitional time while also providing exposure to current trends and evidence in transition and the medical home. The case introduces learners to aspects of program development and allows learners to identify opportunities for advocacy and leadership.

While this case was written for learners in a multidisciplinary adolescent health fellowship program, the case can be used with residents, fellows, interns, or students from a variety of backgrounds (nursing, social work, psychology, nutrition, and medicine) who will be involved in the assessment or management of adolescents who are transitioning into adulthood. A case-based approach was taken to highlight the need for multidisciplinary care for adolescents through a rich case-based discussion.

Adolescents with attention deficit-hyperactivity disorder (ADHD) are more likely to try alcohol and other drugs earlier than their peers, and they are also more likely to develop a substance use disorder. Additionally, medications used to treat ADHD have abuse potential and may be diverted. Given that adolescents with ADHD will present to different providers for care (mental health, nutrition, medical), all providers in an interprofessional team should consider screening patients for substance use in addition to the nutritional, physical, and cognitive issues associated with ADHD and its treatment.

This case evolves over each session to facilitate learners’ development of skills in the screening, assessment, management, and treatment of substance use and ADHD, highlighting the strengths of different specialties of the interprofessional team. We developed this case to provide an opportunity for learners to explore challenges common to the clinical management of substance use and ADHD while also providing exposure to current trends and evidence in ADHD and adolescent substance use. The case introduces learners to aspects of program development and allows them to identify opportunities for advocacy and leadership.

Included herein is the case presentation in four sessions, a resource list of assigned readings, modules to be assigned and/or utilized during case sessions, a motivational interviewing exercise to be used during case session four, and an instructor’s guide.

Understanding participants' preferences for the return of individual research results (IRR) in genomic research may allow for the implementation of more beneficial result disclosure methods. We tested four preference-setting models through cognitive interviews of parents to explore how parents conceptualize the process of setting preferences and which disease characteristics they believe to be most important when deciding what results to receive on their child. Severity and preventability of a condition were highly influential in decision making and certain groups of research results were anticipated by participants to have negative psychological effects. These findings informed the development of an educational tool and preference-setting model that can be scaled for use in the return of IRR from large biobank studies.

BACKGROUND AND OBJECTIVE: Adolescents face peak risks for onset and intensification of alcohol and marijuana use. However, we know little about these behaviors and their associations with knowledge or treatment adherence among chronically ill youth, a medically vulnerable group. METHODS: Cross-sectional assessment of consented youth ages 9 to 18 years receiving care for asthma/cystic fibrosis, type 1 diabetes, arthritis, or inflammatory bowel disease (IBD) by using a self-administered online tool. Prevalence and correlates of risk behaviors and associations with knowledge and treatment adherence were estimated using descriptive statistics and logistic regression, controlling for demographics, mental health, and the multiclinic sampling frame. RESULTS: Of 403 consented youth (75.8% response), 51.6% were girls, 75.1% were white, and average age was 15.6 years. Of high school youth, 36.5% and 12.7% reported past-year alcohol use and binge drinking, respectively; 20% reported past-year marijuana use. Among high school youth, 53.1% and 37.2% answered correctly that alcohol can interfere with their medications and laboratory tests; youth answering incorrectly were 8.53 and 4.46 times more likely to drink and binge drink, respectively (P values < .001). Thirty-two percent and 8.3% of high school youth reported regularly forgetting or skipping their medications in the past 30 days; compared with past-year nondrinking youth, drinkers were 1.79 and 1.61 times as likely to report regularly missing or skipping medications (P values < .05). CONCLUSIONS: Alcohol and marijuana use are common among youth with chronic medical conditions. Alcohol use is associated with treatment nonadherence. Education and preventive interventions are warranted to ameliorate risk.