IntroductionAsthma 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 analysisThe 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 disseminationInstitutional 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.
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 x 2 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.
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.
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.
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.
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.
Objective: Caregiver-adolescent collaborative decision-making is a key component of effective self-management, although there is limited understanding of this relationship in pediatric asthma. The current study examined the association between parent and youth decision-making and asthma self-management behaviors. Method: Participants included 33 youth ages 12-15 years (M age ϭ 13.18, SD ϭ 1.16) with poorly controlled, persistent asthma and their caregivers. Participants completed the Family Asthma Management System Scale interview to assess core aspects of asthma management. The Decision Making Involvement Scale was administered to evaluate caregiver and adolescent behaviors during asthma-related decision-making. Results: Seventy percent of dyads reported discussing the adolescent's asthma in the past 2 weeks. Forty-seven percent of families reached a final decision during the discussion, and 18% made a partial decision. Either the caregiver (41%) or the dyad together (27%) made the final decision. Youth whose parents made the final decision reported poorer responses to acute asthma symptoms (p ϭ .03, d ϭ 0.99). Higher parental expression of information was associated with better family response to acute asthma symptoms, p ϭ .045, R 2 ϭ 0.69. Conclusions: Findings indicate that joint caregiver-youth collaborative decision-making and parent involvement in asthma-care decision-making were associated with better response to asthma exacerbations. A significant portion of families is not discussing their adolescent's asthma, and future research is needed to identify what families are at risk for reduced communication regarding asthmacare decision-making. Health professionals should assess both caregiver and adolescent decision-making involvement when addressing asthma self-management. Implications for Impact StatementThis study advances the idea that caregiver and youth collaboration during healthrelated decision-making is important for fostering disease management within pediatric asthma. Findings also highlight the need for disease management interventions targeting increased caregiver-youth communication surrounding the adolescent's asthma care.
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