Publications
2018
2017
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.
PURPOSE:
While education-based disparities in health are common, the extent to which chronic conditions contribute to education gaps and to consequent health disparities is not fully understood. As such, we sought to investigate educational aspirations, expectations, and attainment among youth with and without chronic conditions and to determine if these relationships mediated subsequent disparities in health and well-being.
METHODS:
Longitudinal data on 3,518 youths are from the 1997-2013 Panel Study of Income Dynamics, a population-based survey. Multivariate regression was used to assess disparities in educational aspirations, expectations, and attainment by chronic conditionsand the subsequent effects on health and well-being, adjusting for important potential confounders.
RESULTS:
Youth with chronic medical conditions (YCMCs) did not report significantly lower educational aspirations than their healthy peers; however, YCMC reported lower expectations for their educational attainment and fewer YCMC had earned their desired degree by the end of follow-up (e.g., ≥bachelor's degree: 19.9% for YCMC vs. 26.0% for peers, p < .05). YCMC reported significantly worse general health, lower life satisfaction, and lower psychological well-being in young adulthood than did their healthy peers. These disparities persisted after adjustment for confounders; the association between chronic disease and health was partially, but significantly, mediated by actual educational attainment.
CONCLUSIONS:
Findings suggest an important risk mechanism through which YCMC may acquire socioeconomic disadvantage as they develop and progress through educational settings. Disproportionate lags in education, from expectation to attainment, may in turn increase YCMC's susceptibility to poor health and well-being in the future.
We reviewed research regarding system- and visit-level strategies to enhance clinical preventive service delivery and quality for adolescents and young adults. Despite professional consensus on recommended services for adolescents, a strong evidence base for services for young adults, and improved financial access to services with the Affordable Care Act's provisions, receipt of preventive services remains suboptimal. Further research that builds off successful models of linking traditional and community clinics is needed to improve access to care for all youth. To optimize the clinical encounter, promising clinician-focused strategies to improve delivery of preventive services include screening and decision support tools, particularly when integrated into electronic medical record systems and supported by training and feedback. Although results have been mixed, interventions have moved beyond increasing service delivery to demonstrating behavior change. Research on emerging technology—such as gaming platforms, mobile phone applications, and wearable devices—suggests opportunities to expand clinicians' reach; however, existing research is based on limited clinical settings and populations. Improved monitoring systems and further research are needed to examine preventive services facilitators and ensure that interventions are effective across the range of clinical settings where youth receive preventive care, across multiple populations, including young adults, and for more vulnerable populations with less access to quality care.
OBJECTIVE:
Adolescents with attention-deficit/hyperactivity disorder (ADHD) are at increased risk for alcohol and marijuana use. This study's objective is to describe adolescents' ADHD-specific reasons for marijuana use, knowledge of ADHD-specific alcohol risks, and reported subspecialty provider messaging/education regarding alcohol use among adolescents with ADHD.
METHODS:
Youths with ADHD aged 12 to 18 years completed a survey about alcohol and marijuana use, ADHD-specific reasons for marijuana use, knowledge of ADHD-specific alcohol risks, and reported provider messaging/education regarding alcohol use. We assessed knowledge toward substance use using descriptive statistics. We used χ and t tests to determine whether knowledge or provider messaging/education differed by sociodemographic characteristics.
RESULTS:
Of the 96 participants, 61.5% were male, average age was 15.7 years; 31.3% reported past-year alcohol use and 20.8% reported past-year marijuana use. The majority (65.2%) said "no/don't know" to both "Can alcohol make ADHD symptoms worse?" and "Can alcohol interfere or get in the way of the medications you take?" Older participants were more likely to correctly answer the medication question "yes." Despite most (74%) participants reporting that their provider asked about alcohol use, few youth reported that their providers gave specific messages/education that alcohol could make ADHD symptoms worse (9.4%) or interfere with ADHDmedications (14.6%); older participants and past-year alcohol users were more likely to have received these alcohol-specific messages.
CONCLUSION:
Many youth with ADHD are unaware of the risks of alcohol use in relation to ADHD and providers are not consistently discussing these risks in the context of clinical ADHD care.
Discussions about disclosing individual genetic research results include calls to consider participants’ preferences. In this study, parents of Boston Children’s Hospital patients set preferences for disclosure based on disease preventability and severity, and could exclude mental health, developmental, childhood degenerative, and adult-onset disorders. Participants reviewed hypothetical reports and reset preferences, if desired. Among 661 participants who initially wanted all results (64%), 1% reset preferences. Among 336 participants who initially excluded at least one category (36%), 38% reset preferences. Participants who reset preferences added 0.9 categories, on average; and their mean satisfaction on 0 to 10 scales increased from 4.7 to 7.2 (p < .001). Only 2% reduced the number of categories they wanted disclosed. Findings demonstrate the benefits of providing examples of preference options and the tendency of participants to want results disclosed. Findings also suggest that preference-setting models that do not provide specific examples of results could underestimate participants’ desires for information.
Important work rooted in psychological theory posits that health behavior change occurs through a series of discrete stages. Our work builds on the field of social computing by identifying how social media data can be used to resolve behavior stages at high resolution (e.g. hourly/daily) for key population subgroups and times. In essence this approach opens new opportunities to advance psychological theories and better understand how our health is shaped based on the real, dynamic, and rapid actions we make every day. To do so, we bring together domain knowledge and machine learning methods to form a hierarchical classification of Twitter data that resolves different stages of behavior. We identify and examine temporal patterns of the identified stages, with alcohol as a use case (planning or looking to drink, currently drinking, and reflecting on drinking). Known seasonal trends are compared with findings from our methods. We discuss the potential health policy implications of detecting high frequency behavior stages.
BACKGROUND: Screening, brief intervention, and referral to treatment (SBIRT) is recommended as a strategy to prevent or reduce adolescent substance use. Offering SBIRT in schools may provide an opportunity to reach adolescents not accessing primary care. The objective is to assess school nurses' attitudes and practices regarding adolescent SBIRT. METHODS: The authors administered electronically and in person a questionnaire including 29 items on SBIRT attitudes and practices to school nurses registered for the Northeastern University's School Health Institute Summer Program in Massachusetts (N = 168). Survey questions were adapted from a questionnaire originally developed by the American Academy of Pediatrics. RESULTS: One hundred and forty-four nurses completed the survey for a response rate of 85.7%. More than three quarters of the respondents (77.0%) were in favor of universal alcohol screening in schools. None of the respondents reported screening their students on a regular basis. More than half (64.4%) of nurses reported screening students; however, they did so only when they suspected alcohol use. During these instances, only 17.9% used a validated screening tool and almost all (98.2%) used face-to-face clinical interviews. When addressing alcohol use by a student, the large majority of respondents reported including the following recommended clinical strategies: asking about problems related to alcohol use (56.3%), explaining the harms of alcohol use (70.1%), and advising abstinence (73.6%). On average, respondents spend 5 to 10 minutes discussing alcohol use with their students. CONCLUSION: Survey respondents were supportive of universal alcohol screening in school, although few were doing so at the time. When respondents identified students using alcohol, their interventions were closely aligned with clinical recommendations for brief intervention. Implementation of SBIRT that focuses on standardized, annual screening has the potential to deliver high-quality care in this setting.