The relationship between cumulative risk and health-related quality of life in youth with sickle cell disease: Moderating effects of secondary control engagement coping.

BACKGROUND: Youth with sickle cell disease (SCD) often experience low health-related quality of life (HRQOL). Engagement in resilience-promoting processes, such as secondary control engagement (SCE) coping, or adapting to stressors, may be linked to contextual risk factors (e.g., poverty status). This study aims to illuminate relationships between a cumulative risk index (CRI), SCE coping, and HRQOL in youth with SCD and test whether SCE coping moderates the relationship between CRI and HRQOL. PROCEDURE: Participants in this cross-sectional study included 63 youth ages 8-18 with SCD. Participants completed measures to assess SCE coping use (Responses to Stress Questionnaire) and HRQOL (PedsQL SCD Module). Six variables from the electronic medical record were compiled in a CRI. Correlational and regression analyses examined relationships between primary variables and moderating effects of SCE coping, respectively. RESULTS: Model results show that SCE coping and CRI explain variation in HRQOL (p = .001), and a significant interaction exists between SCE and CRI (ß = -.29, p = .02), with a stronger inverse relationship between CRI and HRQOL for higher SCE values. This suggests that lower CRI is associated with greater HRQOL for those with higher SCE coping relative to lower SCE coping. CONCLUSIONS: SCE coping may selectively benefit children with SCD experiencing lower cumulative risk, warranting encouragement of this strategy in clinical settings. Findings do not support SCE coping benefits for youth with higher risk, suggesting that the strategy may not be useful when risk-related stressors are especially pervasive; alternative protective factors should be identified for this risk group.

Physical Activity Engagement: Perspectives From Adolescents With Comorbid Asthma and Overweight/Obesity and Their Caregivers.

OBJECTIVE: Most adolescents do not meet physical activity (PA) guidelines, and engagement rates are even lower among adolescents with asthma and overweight/obesity (OW/OB). Understanding barriers and facilitators to PA engagement that are unique to youth with comorbid asthma and OW/OB is important for PA promotion. The current qualitative study identified caregiver- and adolescent-reported factors contributing to PA among adolescents with comorbid asthma and OW/OB across the four domains of the Pediatric Self-Management Model: individual, family, community, and health care system. METHODS: Participants were 20 adolescents (Mage = 16.01; 55% male) with asthma and OW/OB and their caregiver (90% mothers). Caregivers and adolescents participated in separate semistructured interviews about influences, processes, and behaviors related to adolescent PA engagement. Interviews were analyzed using thematic analysis. RESULTS: Factors contributing to PA varied across four domains. The individual domain included influences (e.g., weight status, psychological and physical challenges, asthma triggers and symptoms) and behaviors (e.g., taking asthma medications, self-monitoring). At the family level, influences included support, lack of modeling, and independence; processes included prompts and praise; and behaviors included engaging in shared PA and providing resources. Community-level influences included surrounding and settings, social support, and cornonavirus disease-2019-related changes, while behaviors included engaging in PA with others and extracurricular activities. CONCLUSIONS: Influences, processes, and behaviors across multiple domains interact to impact adolescent PA engagement, highlighting factors that may be potential leverage points in prevention and intervention efforts to promote adolescent PA.

The Association Between Caregiver Coping and Youth Clinic Attendance and Health-related Quality of Life in Pediatric Sickle Cell Disease.

Caregivers of youth with sickle cell disease (SCD) influence the youth disease management and psychosocial outcomes. Effective caregiver coping is important for improving disease management and outcomes since caregivers often report high disease-related parenting stress. This study characterizes caregiver coping and examines its relation to youth clinic nonattendance and health-related quality of life (HRQOL). Participants were 63 youth with SCD and their caregivers. Caregivers completed the Responses to Stress Questionnaire-SCD module to assess primary control engagement (PCE; attempts to change stressors or reactions to stress), secondary control engagement (SCE; strategies to adapt to stress), and disengagement (avoidance) coping. Youth with SCD completed the Pediatric Quality of Life Inventory-SCD module. Medical records were reviewed for the hematology appointment nonattendance rates. Coping factors were significantly different ( F [1.837, 113.924]=86.071, P <0.001); caregivers reported more PCE ( M =2.75, SD =0.66) and SCE ( M =2.78, SD =0.66) than disengagement ( M =1.75, SD =0.54) coping. Responses to short-answer questions corroborated this pattern. Greater caregiver PCE coping was associated with lower youth nonattendance (ß=-0.28, P =0.050), and greater caregiver SCE coping was related to higher youth HRQOL (ß=0.28, P =0.045). Caregiver coping is related to improved clinic attendance and HRQOL in pediatric SCD. Providers should assess caregiver coping styles and consider encouraging engagement coping.

A Systematic Review of Sleep Disturbances in Pediatric Inflammatory Bowel Disease.

OBJECTIVE: The current systematic review (PROSPERO ID: CRD42020220142) aims to characterize sleep health in pediatric inflammatory bowel disease (IBD) and evaluate disease-related and psychosocial prognostic factors associated with sleep disturbances in pediatric IBD. METHODS: A search of PubMed, PsycINFO, CINAHL, Web of Science, and Cochrane databases was performed. Included studies were written in English, presented original peer-reviewed research, included participants with a mean age of 8-18 years, and reported on at least one quantitative sleep outcome for children with IBD or factors impacting sleep for these children. Studies that did not report on a sleep outcome or factors influencing sleep, or only examined fatigue were excluded. Study quality was evaluated using validated quality assessment tools. The data from the included studies were extracted and synthesized across sleep health domains. RESULTS: Database searches yielded 122 records (total participants = 3,905). After full-text and reference/citation searches, 28 articles were included in the review. Methods used to evaluate sleep widely varied across studies and a majority of the studies were cross-sectional. Results suggest that children with IBD may not experience more frequent sleep disturbance than healthy children. Greater sleep disturbance in pediatric IBD was found to be associated with poorer psychosocial functioning and greater active disease/severe symptoms. CONCLUSIONS: The findings from this review highlight the complex associations between sleep disturbances, inflammation, disease severity, and psychosocial functioning in children with IBD. Additional research with greater methodological rigor (e.g., use of validated sleep measures, longitudinal design, reporting of effect sizes) is warranted to further elucidate these relationships. SUMMARY: The current systematic review examines the existing evidence and methods of measurement of sleep disturbances in pediatric inflammatory bowel disease. We describe and evaluate factors associated with sleep disturbance in this population. The quality of evidence, strengths and weaknesses of the literature, and future directions are described.

Risk and Protective Factors for Physical Activity Engagement Among Adolescents With Comorbid Asthma and Obesity.

OBJECTIVE: The current study identifies levels of physical activity (PA) engagement among adolescents with neither asthma nor overweight/obesity (OW/OB), one, or both conditions. Risk and protective factors are examined across groups. METHODS: Data from 8th, 9th, and 11th graders were obtained from the 2019 Minnesota Student Survey (N = 125,164). One-way analysis of variance was used to assess PA levels across risk groups. Linear regressions were used to examine patterns of risk and protective factors for adolescent PA engagement across four groups (neither asthma nor OW/OB, asthma only, OW/OB only, and comorbid asthma + OW/OB). Results were stratified by race/ethnicity. RESULTS: Adolescents with OW/OB only or asthma + OW/OB had significantly lower PA levels than youth with asthma only or neither condition (M = 3.65-3.67 days/week, SD = 2.20 vs M = 4.15-4.19 days/week, SD = 2.16-2.17, p < .001). The following variables were associated with adolescent PA (p < .001): Adult community care across all risk groups (ß ranges = .13-.16), depressive symptoms among those with neither and both asthma + OW/OB (ß's = -.10), and extracurriculars among those with asthma + OW/OB (ß = .10). Extracurriculars and parent connectedness were protective for Hispanic adolescents. CONCLUSIONS: Adolescents with OW/OB had significantly lower levels of PA compared to those without, regardless of asthma status. Individual and relational factors influenced adolescent PA. Future research investigating factors influencing adolescent PA should consider depressive symptoms, connectedness to adults in the community, non-sport-related extracurricular activity involvement, and address disparities among minoritized youth.

Pediatric Obesity Treatment via Telehealth: Current Evidence and Future Directions.

PURPOSE OF REVIEW: Telehealth delivery of pediatric weight management interventions may address time, travel, and cost barriers to in-person interventions, thus improving accessibility. This narrative review highlights findings from the past 5 years of pediatric lifestyle interventions for weight management that utilize telehealth for treatment delivery. We describe impressions and future directions. RECENT FINDINGS: We identified and included 20 studies that described unique interventions from the past 5 years. The majority of reviewed studies indicated statistically significant reductions in BMI z-scores, high retention and attendance, and high satisfaction. However, mean decreases in BMI z-scores were marginal (approximately 0.10) in all but two studies. Studies did not often report effect sizes. Pediatric telehealth weight management interventions demonstrate good feasibility and acceptability. Improvement in reporting results and more rigorous research, including use of randomized designs, recruitment of larger samples, and incorporation of extended follow-up is needed to determine clinical impact and magnitude of effects.

The Role of Caregiver-Reported Risks in Predicting Adverse Pediatric Outcomes.

OBJECTIVE: Certain social risk factors (e.g., housing instability, food insecurity) have been shown to directly and indirectly influence pediatric health outcomes; however, there is limited understanding of which social factors are most salient for children admitted to the hospital. This study examines how caregiver-reported social and medical characteristics of children experiencing an inpatient admission are associated with the presence of future health complications. METHODS: Caregivers of children experiencing an inpatient admission (N = 249) completed a predischarge questionnaire designed to capture medical and social risk factors across systems (e.g., patient, caregiver, family, community, healthcare environment). Electronic health record (EHR) data were reviewed for child demographic data, chronic disease status, and subsequent emergency department visits or readmissions (i.e., acute events) 90 days postindex hospitalization. Associations between risk factors and event presence were estimated using odds ratios (ORs) and confidence intervals (CI), both unadjusted and adjusted OR (aOR) for chronic disease and age. RESULTS: Thirty-three percent (N = 82) of children experienced at least one event. After accounting for child age and chronic disease status, caregiver perceptions of child's health being generally "poor" or "not good" prior to discharge (aOR = 4.7, 95% CI = 2.3, 9.7), having high care coordination needs (aOR = 3.2, 95% CI = 1.6, 6.1), and experiencing difficulty accessing care coordination (aOR = 2.5, 95% CI = 1.4, 4.7) were significantly associated with return events. CONCLUSIONS: Caregiver report of risks may provide valuable information above and beyond EHR records to both determine risk of future health problems and inform intervention development.

Adaptive Mobile Health Intervention for Adolescents with Asthma: Iterative User-Centered Development.

BACKGROUND: Adolescents diagnosed with persistent asthma commonly take less than 50% of their prescribed inhaled corticosteroids (ICS), placing them at risk for asthma-related morbidity. Adolescents' difficulties with adherence occur in the context of normative developmental changes (eg, increased responsibility for disease management) and rely upon still developing self-regulation and problem-solving skills that are integral for asthma self-management. We developed an adaptive mobile health system, Responsive Asthma Care for Teens (ReACT), that facilitates self-regulation and problem-solving skills during times when adolescents' objectively measured ICS adherence data indicate suboptimal rates of medication use. OBJECTIVE: The current paper describes our user-centered and evidence-based design process in developing ReACT. We explain how we leveraged a combination of individual interviews, national crowdsourced feedback, and an advisory board comprised of target users to develop the intervention content. METHODS: We developed ReACT over a 15-month period using one-on-one interviews with target ReACT users (n=20), national crowdsourcing (n=257), and an advisory board (n=4) to refine content. Participants included 13-17-year-olds with asthma and their caregivers. A total of 280 adolescents and their caregivers participated in at least one stage of ReACT development. RESULTS: Consistent with self-regulation theory, adolescents identified a variety of salient intrapersonal (eg, forgetfulness, mood) and external (eg, changes in routine) barriers to ICS use during individual interviews. Adolescents viewed the majority of ReACT intervention content (514/555 messages, 93%) favorably during the crowdsourcing phase, and the advisory board helped to refine the content that did not receive favorable feedback during crowdsourcing. Additionally, the advisory board provided suggestions for improving additional components of ReACT (eg, videos, message flow). CONCLUSIONS: ReACT involved stakeholders via qualitative approaches and crowdsourcing throughout the creation and refinement of intervention content. The feedback we received from participants largely supported ReACT's emphasis on providing adaptive and personalized intervention content to facilitate self-regulation and problem-solving skills, and the research team successfully completed the recommended refinements to the intervention content during the iterative development process.

Identification of Caregiver-Reported Social Risk Factors in Hospitalized Children.

OBJECTIVES: Although health systems are increasingly moving toward addressing social determinants of health, social risk screening for hospitalized children is largely unexplored. We sought to determine if inpatient screening was feasible and describe the prevalence of social risk among children and caregivers, with special attention given to children with chronic conditions. METHODS: Caregivers of pediatric patients on the hospitalist service at a children's hospital in the Pacific Northwest completed a social risk survey in 2017. This survey was used to capture items related to caregiver demographics; socioeconomic, psychosocial, and household risks; and adverse childhood experiences (ACEs). Charts were reviewed for child demographics and medical complexity. Results were tabulated as frequency distributions, and analyses compared the association of risk factors with a child's medical complexity by using χ2 tests. RESULTS: A total of 265 out of 304 (87%) caregivers consented to participate. One in 3 families endorsed markers of financial stress (eg, difficulty paying for food, rent, or utilities). Forty percent experienced medical bill or insurance troubles. Caregiver mental health concerns were prevalent, affecting over one-third of all respondents. ACEs were also common, with 38% of children having at least 1 ACE. The presence of any ACE was more likely for children with chronic conditions than those without. CONCLUSIONS: We found that social risk screening in the inpatient setting was feasible; social risk was uniformly common and did not disproportionately affect those with chronic diseases. Knowing the prevalence of social risk may assist in appropriate alignment of interventions tiered by social complexity.

Responsive Asthma Care for Teens (ReACT): development protocol for an adaptive mobile health intervention for adolescents with asthma.

INTRODUCTION: Asthma is a leading cause of youth morbidity in the USA, affecting >8% of youth. Adherence to inhaled corticosteroids (ICS) can prevent asthma-related morbidity; however, the typical adolescent with asthma takes fewer than 50% of their prescribed doses. Adolescents are uniquely vulnerable to suboptimal asthma self-management due to still-developing executive functioning capabilities that may impede consistent self-regulation and weaken attempts to use problem solving to overcome barriers to ICS adherence. METHODS AND ANALYSIS: The aims of this project are to improve adherence to ICS as an important step towards better self-management among adolescents aged 13-17 years diagnosed with asthma by merging the efficacious behaviour change strategies found in behavioural health interventions with scalable, adaptive mobile health (mHealth) technologies to create the Responsive Asthma Care for Teens programme (ReACT). ReACT intervention content will be developed through an iterative user-centred design process that includes conducting (1) one-on-one interviews with 20 teens with asthma; (2) crowdsourced feedback from a nationally representative panel of 100 adolescents with asthma and (3) an advisory board of youth with asthma, a paediatric pulmonologist and a behavioural health expert. In tandem, we will work with an existing technology vendor to programme ReACT algorithms to allow for tailored intervention delivery. We will conduct usability testing of an alpha version of ReACT with a sample of 20 target users to assess acceptability and usability of our mHealth intervention. Participants will complete a 4-week run-in period to monitor their adherence with all ReACT features turned off. Subsequently, participants will complete a 4-week intervention period with all ReACT features activated. The study started in October 2018 and is scheduled to conclude in late 2019. ETHICS AND DISSEMINATION: Institutional review board approval was obtained at the University of Kansas and the University of Florida. We will submit study findings for presentation at national research conferences that are well attended by a mix of psychologists, allied health professionals and physicians. We will publish study findings in peer-reviewed journals read by members of the psychology, nursing and pulmonary communities.

All systems go: An ecological perspective of behavioral health for youth with type 1 diabetes.

INTRODUCTION: Youth with type 1 diabetes (T1D) experiencing self-management difficulties are at risk of irreversible long-term health problems and consume a disproportionate amount of health care resources. Behavioral health interventions for this population have shown limited long-term effects, perhaps because of limited research on and intervention in relevant environments. To effectively intervene, providers must first thoroughly understand how risk factors interact with various contexts (e.g., school, home, hospital) to determine opportunities for the development of relevant interventions. METHOD: This review utilized an ecological systems framework to examine the state of the literature with regard to risk factors for poor T1D outcomes and associated intervention. RESULTS: This review identified that, whereas risk factors in some systems (e.g., individual, family) have received disproportionate scrutiny, other environments and contexts (e.g., school, medical system) have been relatively neglected by researchers. Similarly, interventions that target understudied environments are lacking, and the majority of rigorously studied interventions only target a single context. Perhaps this accounts for the lack of interventions shown to have a long-term impact on glycemic control. DISCUSSION: Our review demonstrates that researchers and funding agencies should prioritize efforts that (a) examine the influence of underexamined environments (e.g., primary care clinics, schools) and interactions (e.g., health care provider to parent, school nurse to youth) on T1D outcomes, (b) place increased emphasis on inclusion of understudied populations (e.g., families of minority racial/ethnic backgrounds), and (c) develop and evaluate interventions that specifically are tailored for these settings, interactions, and populations. (PsycINFO Database Record (c) 2019 APA, all rights reserved).