The impact of social-environmental factors on IQ in syndromic intellectual developmental disabilities.

Despite having the same underlying genetic etiology, individuals with the same syndromic form of intellectual developmental disability (IDD) show a large degree of interindividual differences in cognition and IQ. Research indicates that up to 80% of the variation in IQ scores among individuals with syndromic IDDs is attributable to nongenetic effects, including social-environmental factors. In this narrative review, we summarize evidence of the influence that factors related to economic stability (focused on due to its prevalence in existing literature) have on IQ in individuals with syndromic IDDs. We also highlight the pathways through which economic stability is hypothesized to impact cognitive development and drive individual differences in IQ among individuals with syndromic IDDs. We also identify broader social-environmental factors (e.g., social determinants of health) that warrant consideration in future research, but that have not yet been explored in syndromic IDDs. We conclude by making recommendations to address the urgent need for further research into other salient factors associated with heterogeneity in IQ. These recommendations ultimately may shape individual- and community-level interventions and may inform systems-level public policy efforts to promote the cognitive development of and improve the lived experiences of individuals with syndromic IDDs.

Utility of a pediatric psychosocial screener in an outpatient burn clinic.

Psychosocial concerns are common among youth who sustained a burn injury. Detecting psychosocial distress early is essential to ensure appropriate treatment and referrals. Thus far, research has focused largely on long-term outcomes of pediatric burn survivors. The current quality improvement initiative details the implementation and outcomes of brief, pragmatic screening to assess psychosocial concerns among pediatric burn survivors in an outpatient setting. A primary caregiver completed an age-appropriate psychosocial screener for youth ages 4-10 years (n=69), while patients aged 11-17 years (n=72) completed a self-report screener. Total scores were used to categorize patients as acute risk (i.e., emotional concerns requiring immediate attention), moderate-risk (i.e., elevated symptoms, but no immediate safety concerns), or low-risk (i.e., endorsing few to no symptoms). Acute risk patients were evaluated by medical staff to determine the need for immediate psychiatry intervention or social services referrals. Moderate-risk patients met with the on-site psychology team during their clinic visit or were contacted by telephone within one week. Patients in the low-risk category warranted no additional follow-up post-screening. Most patients scored in the low-risk category (n=120; 85%), while 11% (n=16) and 4% (n=5) endorsed symptoms consistent with moderate and acute risk, respectively. Results demonstrate the utility of implementing pediatric psychosocial screening in an outpatient burn clinic, the importance of detecting psychosocial concerns in this context, and usage of referrals to address concerns. Findings also shed light on key caveats of psychosocial screening, barriers to accessing psychosocial support, and the potential benefits of embedded psychological support during medical visits.

A randomized clinical trial to support adherence regimens in children with epilepsy: Examining potential mechanisms of change.

OBJECTIVE: A family-tailored education and problem-solving intervention, Supporting Treatment Adherence Regimens (STAR), was developed to address the adherence challenges common in youth with epilepsy and their families. Randomized clinical trial (RCT) results indicated a 21% adherence improvement in the STAR group compared with an education-only (EO) group 12-months post-intervention. The current study examined group differences (STAR vs. EO) in epilepsy-specific knowledge, barriers to medication adherence, problem-solving skills, caregiver emotional distress, and family functioning over time and whether these factors mediated group differences in adherence at 12-months post-intervention. METHODS: Two-hundred children (ages 2-12) with epilepsy and their caregivers were included as RCT participants. Children with new-onset epilepsy and adherence <95% were randomized to receive either the STAR (n = 27) or EO (n = 29) intervention. Caregivers completed questionnaires assessing outcomes of interest at baseline, midpoint of the intervention, post-intervention, and 3-, 6-, and 12-month follow-ups. Regression-based analyses of covariance and longitudinal mixed effect linear models were conducted. RESULTS: Results generally revealed no significant group differences across outcomes of interest at post-intervention or over time. However, one significant model did emerge for social problem-solving skills (b = -1.74, p = 0.04), such that these scores were initially higher in the STAR group compared to the EO group, then decreased slightly in the STAR group over time while remaining stable in the EO group. None of these factors mediated group differences in adherence at 12-months post-intervention. CONCLUSION: Future research should examine other potential mechanisms of treatment change after adherence interventions, such as STAR. Nonsignificant findings can inform the development of future study designs and intervention efforts.

Psychologists as leaders in equitable science: Applications of antiracism and community participatory strategies in a pediatric behavioral medicine clinical trial.

Psychologists have an ethical responsibility to advance health equity and can play a significant role in improving health care experiences for families racialized as Black, including those with sickle cell disease (SCD), a group of genetic blood disorders primarily affecting communities of color. Parents of children with SCD report experiences of stigma and discrimination due to racism in the health care system. The current commentary describes the application of antiracism and participatory strategies to the research design, implementation, and dissemination of a behavioral medicine clinical trial (Engage-HU; NCT03442114) of shared decision-making (SDM) for pediatric patients with SCD, including (a) the development of a research question to promote justice for racialized groups; (b) a focus on "redressing imbalances" through SDM and a multidisciplinary, inclusive research team led by a Black psychologist; (c) community participatory approaches through the integration of stakeholder feedback across the study; and (d) centering context by attending to structural realities in response to the COVID-19 and racism pandemics. With attention to the fact that most primary caregivers of children with SCD are Black women, an intersectionality lens was applied. Implications and considerations for psychologists working to advance health equity in medical settings are also discussed. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Demystifying a family-based epilepsy adherence problem-solving intervention: Exploring adherence barriers and solutions.

Objective: Barriers to medication adherence are common in pediatric epilepsy and associated with nonadherence, suboptimal seizure outcomes, and quality of life. A manualized, family-tailored education and problem-solving adherence intervention to address adherence barriers was tested in a randomized controlled trial in young children (2-12 years) with epilepsy. Study aims were to identify the adherence barriers and solutions chosen by families during intervention. Methods: Participants with demonstrated non-adherence were randomized to either education attention control or treatment. In this exploratory, secondary analysis, treatment group data were examined, including adherence barriers and solutions discussed during face-to-face problem-solving sessions and telephone follow-ups. Treatment data were independently coded utilizing codebook thematic analysis. Results: Twenty-seven children were randomized to treatment (M=7.5±2.9; 59.1% female). Across sessions, coding revealed 10 adherence barriers: Overall Forgetting (38-57%), Routine Change Routine (14-24%), Competing Activities (5-19%), Opposition (0-9%), Transition of Responsibility (0-5%), Running Out of Medication (0-10%), Forgetting During Travel (0-10%), Medication Not a Priority (0-5%), Medication Taste (0-5%), and Pill Swallowing (0-5%). Eight solution types were chosen and implemented by families: Environmental Cuing (29-50%), Multi-Pronged solutions (0-24%), Positive Reinforcement (14-23%), Back-up Doses (0-14%), Refill Tracking (0-10%), Caregiver Modeling of Adherence Behavior (0-5%), Pill Swallowing Intervention (0-5%), and Other (0-5%). Conclusions: Results highlight key adherence barriers identified by families of children with epilepsy and solutions implemented to address them. These data provide guidance to healthcare teams on how to successfully address adherence barriers in clinical settings.Clinical trials #NCT01851057.

Implementation of Psychosocial Screening into Diabetes Clinics: Experience from the Type 1 Diabetes Exchange Quality Improvement Network.

PURPOSE OF REVIEW: Although advances in diabetes technology and pharmacology have significantly and positively impacted diabetes management and health outcomes for some, diabetes care remains burdensome and can be challenging to balance with other life priorities. The purpose of this article is to review the rationale for assessment of psychosocial domains in diabetes care settings and strategies for the implementation of psychosocial screening into routine practice. Survey data from the Type 1 Diabetes Exchange Quality Improvement Network is highlighted. RECENT FINDINGS: Implementation of psychosocial screening requires identifying the population; selecting validated tools to assess target domains; determining frequency of screening and mode of survey delivery; and scoring, interpreting, documenting, and facilitating referrals such that these processes are part of clinical workflows. Recognizing the influence of psychosocial factors for people with diabetes (PWD), professional society guidelines for comprehensive diabetes care recommend the integration of psychosocial screening into routine care.

Diversity, Equity, and Inclusion within Pediatric Adherence Science.

Given the long-standing history of systemic racism in psychological science, diversity, equity, and inclusion (DEI) efforts are increasingly vital to the advancement and improvement of the field. This commentary extends the seminal work of the article Upending Racism in Psychological Science: Strategies to Change How Our Science is Conducted, Reported, Reviewed, and Disseminated (Buchanan et al., Am Psychol, https://doi.org/10.31234/osf.io/6nk4x , 2020) by providing tangible applications and recommendations to improve DEI integration into pediatric adherence science. Real-world adherence examples are discussed regarding the challenges faced in systematically integrating DEI principles, potential solutions to overcoming barriers, and the implications of these efforts on scientific advancement in an effort to address and dismantle research practices that perpetuate inequity and White supremacy. Specifically, we provide discourse and practical guidance related to the conduct, reporting, reviewing, and dissemination of pediatric adherence science to promote dialog and produce actionable change toward the promotion of health equity and social justice.

Predicting Adolescent Electronic Cigarette Use: Differences by Never, Ever, and Current Users.

OBJECTIVE: Rising rates of adolescent electronic cigarette (ECIG) use is concerning because it can lead to adverse health outcomes and increased risk behavior. There are known predictors of ever versus never ECIG use, but less are known about risk factors for ever versus current use of ECIGs. Problem behavior theory (PBT) was used to evaluate possible risk factors for different ECIG use status. METHODS: Participants were 573 high school students who completed questionnaires measuring ECIG use, as well as constructs within the Social Environment, Perceived Environment, Personality, and Behavior domains of PBT. Multinomial logistic regression was used to evaluate how predictor variables differentiated between participants who reported (a) never use, (b) ever ECIG use, or (c) current ECIG use. RESULTS: Adolescents were more likely to endorse ever ECIG use than never use if they reported peer ECIG use, perceived more benefits and fewer costs (e.g., health) of ECIG use, higher extraversion, alcohol and cigarette use (never vs. ever vs. past 30 days), or attended a school with a higher percentage of socioeconomically disadvantaged students. Adolescents were more likely to report current ECIG use than ever ECIG use if they perceived fewer costs of ECIG use or used cannabis in their lifetime (yes/no). CONCLUSIONS: PBT variables differentiated between ever ECIG use and never ECIG use. However, these variables did not differentiate between ever and current ECIG use. Identifying unique risk factors for current versus ever ECIG use is important to understanding persistent ECIG use and subsequent targeted prevention and intervention programs.

Pictorial versus written asthma action plans for youth: initial impact on regimen knowledge, medication adherence, symptom control, and family satisfaction.

OBJECTIVE: Asthma action plans (AAP) are recommended to guide asthma management. Written AAPs (WAAPs) are under-utilized and can be difficult to understand. Our study designed and tested a simplified pictorial AAP (PAAP). We hypothesized that better outcomes would be obtained for youth with the PAAP. METHODS: One hundred and sixty-nine (169) youth (aged 8-17; AAP-naïve) were screened for this pilot, 2-arm randomized controlled trial. Feasibility, usability and preliminary efficacy of PAAP compared to a WAAP, for improving outcomes (inhaled corticosteroid (ICS) adherence, symptom control, AAP knowledge, AAP satisfaction) were assessed quantitatively. Youth received an AAP from their physician after completing baseline measures and completed measures at three additional time points (1-, 3-, and 6-month). RESULTS: Forty-five youth were recruited (PAAP = 22; WAAP = 23). Youth AAP knowledge was higher for the PAAP group compared to the WAAP group (p = .017). ICS adherence did not differ between groups, over time, or based on prescribed dosing; however, for WAAP participants, adherence was lower with a higher daily prescription (4 puffs) relative to a lower dose (p = .006). Symptom control improved with both AAPs, but the change was not statistically significant. Lung function did not change significantly by AAP type or time, and literacy variables were not related significantly to outcomes. Youth satisfaction with AAP improved significantly for the PAAP group compared to the WAAP group (p = .03). CONCLUSIONS: Higher AAP knowledge and satisfaction among youth in the PAAP group suggests that structured education from a physician using a PAAP is beneficial. Intervention and study design insights gained will guide future research.

Validation of the Electronic Cigarette Expectancy Scale for Adolescents.

INTRODUCTION: Expectancies of costs and benefits can be predictive of tobacco use, as well as cessation attempts and success. Measuring electronic cigarette (ECIG) expectancies is in its infancy, particularly among adolescents. However, the popularity of adolescent ECIG use demonstrates the need to understand better these contributing factors. Our aim was to evaluate the factor structure and initial psychometric properties of an ECIG expectancies questionnaire adapted from an existing validated scale for conventional cigarette smoking (Smoking Expectancy Scale for Adolescents; SESA). METHODS: Five-hundred sixty-nine adolescents (14-18 years; 60.1% female; 84.1% White) were recruited from high schools and an adolescent medicine clinic. Participants completed a battery of self-report measures, including the ECIG Expectancies Scale for Adolescents (EESA). Exploratory factor analyses were used to examine the underlying factor structure, and convergent validity was evaluated using variables conceptually related to ECIG expectancies. RESULTS: A three-factor solution was chosen based on statistical evidence and conceptual relevance. All three factors - Costs, Social Benefits, and Affective/Weight Benefits - had strong internal consistencies and demonstrated convergent validity via significant associations with peer ECIG use and Conscientiousness. The Costs and Affective/Weight Benefits factors also demonstrated convergent validity with sensation-seeking, intention to use ECIGs, and ECIG use status (current, lifetime, nonuser). CONCLUSION: Results support the initial reliability and validity of the EESA scores. This factor structure is related to, yet different from, that observed not only for the SESA but also for other ECIG-expectancy measures among adult populations.

Associations Between Peer Use, Costs and Benefits, Self-Efficacy, and Adolescent E-cigarette Use.

OBJECTIVE: Prior research identified peer use as a salient risk factor of adolescent electronic cigarette (e-cigarette) use, but has not expanded on the mechanisms of this association. METHODS: Participants were 562 adolescents recruited from rural and suburban public high schools and an adolescent medicine clinic in the mid-Atlantic United States. Participants completed a packet of questionnaires that assessed demographics, substance use, expectations about the consequences of e-cigarette use, and perceptions of their own self-efficacy to resist using e-cigarettes. We estimated a series of mediation models using the MODEL INDIRECT command in MPLUS statistical software. In all models, significance of indirect effects from peer e-cigarette use to self-reported e-cigarette use were tested via two variables: (a) expected costs, (b) benefits of e-cigarette use, and (c) the perceived self-efficacy of the individual to refrain from e-cigarette use. RESULTS: Adolescents with more peers using e-cigarettes were more likely to have ever used an e-cigarette and perceived greater benefits and fewer costs, which was associated with a reduced self-efficacy to refrain from e-cigarette smoking (Model 1). Those with more peers using e-cigarettes were more likely to be currently using e-cigarettes themselves because they perceived greater benefits and fewer costs, which was associated with a reduced self-efficacy to refrain from e-cigarette smoking (Model 2). CONCLUSION: Peer use, self-efficacy to resist use, and expectations of cost and benefits of e-cigarette use should be considered as possible targets when devising tailored interventions and policies to prevent or reduce negative health consequences of long-term e-cigarette use.

Comparing Written Versus Pictorial Asthma Action Plans to Improve Asthma Management and Health Outcomes Among Children and Adolescents: Protocol of a Pilot and Feasibility Randomized Controlled Trial.

BACKGROUND: Asthma is an important focus for pediatric health research as management of asthma symptoms is a significant challenge, and morbidity and mortality among youths with asthma remain prevalent. Treatment guidelines for asthma recommend a written asthma action plan (WAAP) that summarizes individualized instructions for daily medication use. However, WAAPs are typically written at a seventh- to ninth-grade reading level, which can be a barrier to young people in understanding their treatment, having confidence in using a WAAP, and engaging with asthma education. OBJECTIVE: Utilizing a feasibility and pilot randomized controlled trial (RCT) design, the objective of the Take Action for Asthma Control study is to test a symptom-based, computer-generated pictorial asthma action plan (PAAP) in comparison with a standard WAAP and assess the feasibility and acceptability of the asthma action plan (AAP) intervention and study procedures. The study has 3 aims: (1) estimate the effect sizes of PAAPs compared with WAAPs on outcomes (eg, AAP knowledge and medication adherence), (2) evaluate feasibility and acceptability of AAP intervention and RCT procedures from the perspectives of key stakeholders, and (3) establish whether parent and youth literacy levels are associated with treatment outcomes. METHODS: This feasibility and pilot RCT is a block randomized, 2-arm, parallel-group clinical trial, lasting 6 months in duration. At baseline, participants will be randomly assigned to receive a PAAP or WAAP generated for them and reviewed with them by their asthma physician. Study procedures will take place over 4 separate time points: a baseline clinic appointment, 1-month telephone follow-up, and 3- and 6-month clinic-based follow-ups. At each time point, data will be collected related to the main outcomes: AAP knowledge, AAP satisfaction, asthma control, pulmonary function, and adherence to daily asthma medication. A sample size of up to 60 participants (aged 8-17 years) will be recruited. Feasibility and acceptability data will be collected via one-to-one qualitative interviews with providers involved in the study and a subgroup of families that participate in the study. RESULTS: Recruitment and data collection began in May 2017 and were completed in October 2018. CONCLUSIONS: This pilot and feasibility study will test the potential efficacy, feasibility, and acceptability of an AAP intervention and study procedures. The findings will inform the design and delivery of a future definitive trial to assess the efficacy of PAAPs versus WAAPs in supporting asthma self-management among children and adolescents. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/11733.

Implementation of a Psychosocial Screener for Adults in an Outpatient Burn Clinic.

Burn injuries are significant medical traumas often resulting in substantial psychosocial distress. Early identification of psychosocial concerns is crucial to developing individualized treatments to improve psychosocial functioning. Few studies have examined the prevalence of a broad range of psychosocial concerns in an adult outpatient burn setting. In this study, they developed and implemented a screening instrument to identify patients experiencing acute psychosocial distress/risk and patients with mental health difficulties necessitating a psychology consult. The instrument assessed depression, anxiety, substance abuse, posttraumatic stress, perceived safety at home, and suicidal ideation. Adult patients (N = 178) completed the screener during an initial outpatient clinic visit. Responses on the screener were used to identify patients as "high risk" (ie, endorsing suicidal ideation and/or feeling unsafe at home), "moderate risk" (ie, endorsing no-acute mental health symptoms), or "low risk" (ie, few to no symptoms endorsed). Patients in the "high risk" category were immediately evaluated by the attending physician, who then determined whether emergency treatment was needed. Patients in the "moderate risk" category were referred to the on-site psychology team for in-person or phone consultation within 3 days of screener completion. Of the 178 individuals screened, a majority endorsed low to no psychosocial distress (N = 124; 69.7%). About one-third (N = 52) indicated moderate levels of psychosocial distress, and two patients (1.1%) endorsed acute psychosocial distress. This novel screening tool was effectively implemented in an outpatient burn clinic and demonstrates considerable promise for identifying psychosocially vulnerable patients in an adult burn survivor population.

Developing pictorial asthma action plans to promote self-management and health in rural youth with asthma: A qualitative study.

OBJECTIVE: Asthma action plans (AAPs) provide asthma management instructions to families; however, AAPs typically are written at a 7th-9th grade reading level, making them less useful in lower literacy families. There is a need to develop simpler AAP formats and content to optimize their utility across all families, including those who are rural and may be at a risk for literacy concerns. Because using pictures can simplify and enhance health education, our study's aim was to develop a pictorial AAP through a series of focus groups with key stakeholders - youth with asthma, caregivers, and physicians. METHODS: Fourteen caregiver/youth dyads and four physicians participated in separate focus groups where their preferences for pictorial AAP structure and content were obtained. Focus groups were audio recorded, transcribed, coded with ATLAS.ti, and analyzed for themes. RESULTS: Youth and their caregivers prefer that the AAPs include simple, cartoon-like pictures customized to the patient. Physicians emphasized AAP's capability to display pictures of controller medication given its importance in preventing asthma exacerbations. A stoplight format, currently used in most written AAPs, received positive reviews. Specific suggestions for pictures showing symptoms, medications, and how to take medication were suggested. Words and short phrases accompanying the pictures were thought to add clarity. CONCLUSIONS: Key stakeholders viewed pictorial AAPs as positive and potentially effective alternatives to standard written AAPs. It is expected that low literacy youth and caregivers would more easily understand a pictorial AAP presentation, which should facilitate better medication adherence and asthma outcomes in these children.

Adolescent sleep and cellular phone use: recent trends and implications for research.

Adolescent sleep needs range from 8.5-10 hours per night, with older adolescents requiring less sleep than younger adolescents. On average, however, American adolescents receive between 7.5-8.5 hours of sleep per night, with many sleeping fewer than 6.5 hours on school nights. Cellular phone use is emerging as an important factor that interferes with both sleep quality and quantity, particularly as smartphones become more widely available to teens. This review paper has three objectives. First, we will describe adolescent sleep patterns and the effects of sleep deprivation on adolescent physical and mental health. Second, we will describe current trends in technology use among adolescents, making associations to how technology impacts sleep. Lastly, we will discuss some of the methodological barriers of conducting sleep and technology research with adolescents and young adults and offer suggestions for overcoming those barriers. We will also discuss implications for healthcare providers.