Adolescent Self-management Research Articles

School Nurses Practices Promoting Self-Management and Healthcare Transition Skills for Adolescents with Chronic Conditions in Urban Public Schools: A Mixed Methods Study.

Background: Adolescents and young adults (AYA) with chronic conditions should acquire self-management skills as part of their healthcare transition (HCT) from pediatric to adult-focused care. HCT/self-management skills have the potential to help mitigate health disparities among minority AYA with chronic conditions. This study investigated school nurses' practices promoting HCT/self-management skills in urban public schools. Methods: Seventy-nine nurses from three urban school districts in Massachusetts completed a survey of 32 Likert-type questions on HCT/self-management skills, eight demographic questions, and five open-ended practice questions assessing how often they have asked students with chronic conditions about HCT/self-management skills, based on the UNC TRxANSITION IndexTM. Results: Among the 79 school nurses who participated (response rate 76%), 67% never or rarely assessed students' knowledge of HCT/self-management, and 90% would use a tool that promotes/measures HCT/self-management skills. Conclusion: In our study sample, most school nurses acknowledged the importance of assessing HCT/self-management skills. The majority favored using a tool to promote these skills.

Effects of Trauma and Anxiety on Adherence in Pediatric Type 1 Diabetes.

Psychiatric factors such as depression, anxiety, and life stressors have been shown to negatively affect diabetes self-management and A1C in children and adolescents. However, less is known about how trauma exposure and symptoms of post-traumatic stress disorder (PTSD) may affect type 1 diabetes. To determine the rates of trauma exposure and PTSD symptoms in patients aged 7-21 years with type 1 diabetes and to examine the relationships among trauma exposure, PTSD, anxiety, depression, and diabetes self-management. Patients underwent standardized psychiatric screening questionnaires during clinic visits. A1C at goal was defined as <7.0%, and behavioral adherence was defined as specific parameters of blood glucose monitoring. χ2 and Fisher exact tests were used to assess the relationships among trauma, PTSD, anxiety, and behavioral adherence. ANOVA was conducted to examine group differences between A1C and the presence of suicidal ideation. Of the participants, 38.4% (n = 99, mean age 13.8 ± 3.5 years, 51.5% female) had trauma symptoms and functional impairment concerning for PTSD. Rates of trauma secondary to accidental injury, medical traumatic stress, natural disaster, and witness to family violence were 28.3, 22.2, 10.1, and 6.1%, respectively. Neither PTSD nor anxiety nor depression symptoms were associated with behavioral nonadherence (P = 0.546, P = 0.337, and P = 0.697, respectively), but the subscales for significant school avoidance and generalized anxiety disorders were associated with behavioral nonadherence (P = 0.023 and P = 0.032, respectively). Those who reported suicidal ideation had higher mean A1C than those who did not (A1C 8.9 vs. 8.3, P = 0.047). Although trauma was common among youth with type 1 diabetes, neither trauma nor PTSD was associated with changes to self-management. However, certain forms of anxiety and suicidal ideation were associated with poor self-management and higher A1C, respectively.

A multimodal approach to improve asthmatic adolescents' self-efficacy in Taiwan.

An efficient asthma self-management for adolescents must be based on adolescents' needs, increase self-efficacy and adherence to treatment. The effects of such program are likely be dose dependent. To examine the impact of the dose-effect of multiple components on an asthma self-management program for adolescents aged 12-18 years in Taiwan. A scoring system was developed to classify intervention groups into high- (19-23), medium- (11-18) and low (&lt; 11) dose according to the number of components completed by participants. The impacts of the dose level on outcomes of asthma self-efficacy, prevention behaviors, asthma medication adherence, and asthma symptoms were examined. Our results suggest that a high dose of the intervention can improve adolescents' self-efficacy, asthma prevention behavior, and medication adherence. Trial Registration No: ACTRN12613001294741.

Acceptability of an Adolescent Self-Management Program for Juvenile Idiopathic Arthritis.

ObjectiveThe study objective was to test the acceptability of a self‐management program (SMP) for adolescents with juvenile idiopathic arthritis (JIA) focused on disease information, self‐management, and social support needs.MethodsThis study was conducted using inductive qualitative methods to explore the acceptability of an in‐person/videoconference SMP. Two groups of four adolescents with JIA (mean age = 13.5, SD = 0.8) and two groups of pediatric rheumatology health care professionals (n = 4, n = 5) participated in four feedback sessions each. The SMP was presented to study participants, and feedback was provided on the content, format, and structure of the program. Thematic analysis was used to analyze the data.ResultsAdolescents felt that the content was appropriate and would be effective in supporting self‐management of their arthritis. Participants advised that the trustworthiness of the information would be increased if a rheumatology health care provider facilitated the session. Potential barriers to participation included distance and availability (weekdays and times), but the option for videoconference‐based participation was an appropriate solution to both of these issues. Minor changes were made to content and format, and required changes were made to address participant recommendations for improvement.ConclusionThis study confirmed the acceptability of an in‐person/videoconference SMP for patients with JIA. Modifications were made to the SMP based on the focus group feedback, and future directions include a pilot randomized controlled trial to assess feasibility and preliminary effectiveness of the program.

Comparison of the Impact of a mHealth Self-Management Intervention on Adolescents Versus Young Adults with Sickle Cell Disease

Introduction: Pain and other symptoms of sickle cell disease (SCD) begin in childhood and contribute to poorer quality of life. Complications, risk of death, and symptom burden increase during transition from adolescence to adulthood; self-management is critical for transition readiness and symptom improvement. A mHealth self-management intervention for children/adolescents with SCD and their caregivers (Voice Crisis Alert V2) was adapted to facilitate transition from parent-led management to adolescent self-management. This abstract presents the preliminary impacts of the intervention on symptoms and QOL outcomes and compares findings between adolescents and young adults.Methods: The names and features of the Voice Crisis Alert V2 application (app) components are in Table 1. Targeted sample sizes were 30 dyads of adolescents with SCD ages 11 - 17 and the parent/caregiver and 15 young adults with SCD ages 18 - 25 who had not transitioned to adult care. Data sources included app use, and surveys at baseline, mid-intervention, end-of-intervention, and post-intervention. Adolescent surveys included: the PROMIS SF for anxiety, depressive symptoms, fatigue, pain interference, and pain intensity; the PedsQL with Sickle Cell Disease Module (SCDM) for health-related quality of life (HRQOL); the Sickle Cell Self-Efficacy Scale; and the STARx for transition readiness. Young adult surveys included: the PROMIS SF for anxiety, depression, fatigue, pain interference, pain intensity, and sleep disturbance; the ASCQ-Me for HRQOL; the Sickle Cell Self-Efficacy Scale; and the STARx for transition readiness. Analysis was conducted using descriptive statistics and Spearman's rho. Independent variables were length of time using the app and frequency of app use total and by component. Dependent variables were pre-post intervention differences in scores for outcomes that were key targets of the intervention. Results are reported with 95% CI.Results: Among both groups (adolescents and young adults), pre-post intervention differences in scores indicated improvement in nearly all symptom outcomes; greatest improvement was in pain interference for both groups and fatigue in young adults. Improvements in HRQOL were also noted in nearly all domains for both groups. Adolescents had greatest improvement in school functioning, total SCDM score and subscales for pain and hurt, pain impact, worry I, emotions, and communication II, and young adults in emotional impact, social impact, and pain impact. No to slight improvements in self-efficacy and transition readiness were observed in both groups. Most correlations across groups had CIs that crossed zero, which suggests associations observed in the population may be positive or negative. Twelve correlations did not cross zero in the adolescent sample compared with 1 in the young adult sample, though 5 additional strong correlations were noted. Of the strongest correlations in young adults, all but 1 indicated more time spent using the app was associated with greater improvement in scores. Of the strongest correlations in adolescents, 5 indicated more frequent app use was associated with greater improvement in scores, 3 indicated more frequent app use was associated with less substantial improvement in scores, 3 indicated more time spent using the app was associated with greater improvement in scores, and 1 indicated more time spent using the app was associated with less substantial improvement in scores.Conclusions: Similarities in pre-post intervention differences in scores suggest consistency in intervention impact on outcomes between adolescents and young adults who have not transitioned to adult care. The intervention may be particularly useful for improving pain interference, emotional impact/functioning, school or social impact/functioning, and pain impact/functioning. Little improvement was noted in transition readiness scores in either group, suggesting the intervention may need to include more robust strategies for transition preparation. There were few consistencies between groups in correlation findings; greater improvement in scores may be attributed to more time spent on app activities in young adults compared with greater frequency of use in adolescents. Future efficacy testing with a larger sample is warranted, to include exploration of associations between app use and outcomes across subgroups with varying characteristics. [Display omitted] DisclosuresKanter: Fulcrum Therapeutics, Inc.: Consultancy; Novartis: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Forma: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Agios: Honoraria, Membership on an entity's Board of Directors or advisory committees; Beam: Honoraria, Membership on an entity's Board of Directors or advisory committees; Sanofi: Honoraria, Membership on an entity's Board of Directors or advisory committees; Graphite Bio: Consultancy; GuidePoint Global: Honoraria; Fulcrum Tx: Consultancy.

Transdisciplinary Care for Adolescents With Type 1 Diabetes: Development of a Provider Cross-Discipline Training Curriculum.

Only 17% of adolescents with type 1 diabetes achieve glycemic control targets (1), and many are at risk for psychological concerns (e.g., depression, anxiety, and diabetes distress) (2,3), diminished quality of life (4), and the development of diabetes complications (5,6). Psychological functioning and the quality of parent-child interactions can heavily influence self-management in adolescents with type 1 diabetes and are therefore among the greatest concerns of adolescents with type 1 diabetes, their parents, and their health care providers (HCPs) (7). However, conventional models of care are ill equipped to address these issues effectively. Approximately 30% of diabetes teams do not have access to mental health providers (8), and teams with access to such professionals struggle to efficiently incorporate them into routine care (9). The increasing incidence of youths diagnosed with type 1 diabetes each year (10,11), coupled with the limited supply of pediatric endocrinologists (12) to treat these patients, exacerbates these challenges. Thus, there is a need for novel and alternative models of health care delivery for adolescents with type 1 diabetes that address behavioral and psychological barriers to diabetes management and dietary management and are more time-efficient for diabetes clinicians. Multiple models for integrated pediatric care of type 1 diabetes exist and aim to meet American Diabetes Association (ADA) guidelines for care (13). The ADA recommends a collaborative care approach among HCPs and families, including the incorporation of shared decision-making, medical nutrition therapy, and psychosocial support during routine ambulatory care visits (13). These treatment teams may include endocrinologists, advanced practice nurses, physician assistants, dietitians, certified diabetes care and education specialists (CDCESs), social workers, and psychologists. Multidisciplinary care, typifying much of type 1 diabetes care in the United States, engages several disciplines, but each discipline stays within its boundaries, and knowledge of other disciplines …

Isn't There an App for That? The Role of Smartphone and Tablet Applications for Asthma Education and Self-Management in Adolescents.

Asthma is one of the most common chronic diseases worldwide, with a substantial proportion of the asthma population being children and adolescents. Self-management is recognized as a key component to asthma management, with multiple international guidelines emphasizing the need for adequate self-management skills for good asthma control. Unfortunately, the uptake amongst young people and adolescents is low, with often suboptimal engagement to self-management education and skills contributing to poor adherence to medication as well as poor perception of asthma symptoms. Innovative solutions to deliver education and self-management to adolescents are clearly needed. mHealth is the use of mobile devices such as smartphones and tablet devices to improve healthcare and has been used in multiple chronic diseases. This review articles explores the current use of mHealth in asthma, specifically smartphone and tablet applications as a generation-appropriate, accessible delivery modality for provision of asthma education and self-management interventions in adolescents. Current evidence gaps are also highlighted, which should be addressed in future research.

Developing a Problem-Solving Intervention to Address Methods of Self-Management and Transition Challenges in Adolescents with Sickle Cell Disease: A Qualitative Investigation

Introduction: Given recent advances in medical care for children with Sickle Cell Disease (SCD), families are now seeing their children survive into adulthood. This presents new challenges around transition from pediatric to adult medical care, with responsibility for self-management shifting from parent to child. Interventions to improve self-management skills, such as problem solving education (PSE), have been used to increase self-efficacy and medication adherence in youth with other chronic diseases. The present study sought to explore common barriers and facilitators of disease management during the transition period and the acceptability of adapting PSE to improve transition readiness in adolescents with SCD.Methods: We purposively sampled adolescents with SCD ages 13 to 18 who received care at either Boston Medical Center (BMC) or Boston Children's Hospital and their primary caregiver to participate in focus groups. Each focus group was audio recorded and transcribed. Data were analyzed through use of grounded theory and coded with NVivo, a qualitative analysis software. Transcripts were double-coded until thematic saturation was achieved.Results: A total of 17 adolescents and 15 adult caregivers participated in five focus groups. Groups initially met together to discuss barriers and facilitators of self-management and then split into separate groups of teens and parents to discuss PSE. Teens and parents identified common methods of disease management includingtaking medication, staying warm and dressing appropriately, maintaining hydration and a healthy diet, and staying rested. Teens identified having a daily routine and sharing responsibility with a caregiver as facilitators of self-management. Caregivers commonly mentioned using a set of reminder techniques to help teens manage their health. Barriers to increasing teens' self-management included wanting to fit in with peers and lacking appropriate knowledge. Parents found it challenging to allow teens more responsibility.Parents and teens unanimously approved the adaption of PSE to SCD management and transition. Though a small number of parents stated low interest in participating either for social reasons or lack of perceived need, many identified the potential benefits of the intervention for both parents and teens. Parents felt that educational support would be most beneficial to them, while teens prioritized the benefits of emotional support during the transition period. Most participants would prefer that parents and teens meet separately in a group setting at the hospital or a comfortable environment outside of the home, then join together for a final session. Groups would be held on a weekly basis for a minimum of two months. However, some participants felt the support was imperative and thus could be effective for a year. Participants favored a mentor-style structure where a knowledgeable, college-aged individual with sickle cell disease would serve as the interventionist. This appeared to be a common preference for both parents and teens as they felt it was important to work with an individual that excelled independently and academically, despite any challenges with SCD.Parents and teens willingly identified specific scenarios where they felt PSE would be most valuable. Common PSE scenarios for teens were related to disclosing the diagnosis to peers, enhancing methods of management, and addressing identified barriers to transitioning. PSE scenarios for parents involved working with healthcare and school systems on select adaption issues and learning to “let go” of their teen.Conclusion: Though parents and teens have adapted management techniques to facilitate their transition from pediatric to adult medical care, barriers still exist across medical, personal and educational environments. Applying PSE as an intervention for both parents and teens of a sickle cell population could improve self-management and transition readiness in this vulnerable population. DisclosuresNo relevant conflicts of interest to declare.

Caregiver Perceptions of Adolescent Self-Management Skills Predicts Higher Disease Knowledge Among Adolescents with SCD

Introduction: The increased survivorship of children with sickle cell disease (SCD) into adulthood requires sufficient readiness to transition to adult healthcare. Transition readiness encompasses the necessary skills to successfully transition to adult healthcare, including self-care, decision-making (i.e., self-management), and self-advocacy. Disease education improves self-management in populations with chronic illnesses, but the relationship between disease knowledge and self-management in the adolescent SCD population during healthcare transition is unknown. We hypothesize that disease knowledge is associated with self-management and engagement in adult healthcare.Methods: Adolescents with SCD and their caregivers completed a disease self-management skills checklist (SMSC) in early adolescence. The SMSC was modified from the validated Transition Readiness Assessment Questionnaire (J Pediatr Psychol. 2011 Mar; 36(2): 160-171.). The 21-item SMSC assesses perceived disease knowledge and self-management skills. At age 17, adolescents were invited to visit adult providers prior to leaving pediatric care (J Pediatr Health Care. 2012 Nov-Dec;26(6):e45-9.) At their last pediatric visit, adolescents completed the disease knowledge quiz, which tested their actual knowledge of SCD pathophysiology and complications. The disease knowledge quiz is a new instrument with 97% content validity as assessed by six pediatric and adult SCD experts. Association of SCD knowledge and perceived caregiver and adolescent self-management skills were evaluated by Pearson correlations if normally distributed; otherwise by Spearman correlation. Univariate linear regression tested associations between disease knowledge and SMSC. Univariate logistic regression tested associations between disease knowledge, visitation to adult provider, and completion of first adult visit.Results: Thirty-six African-American adolescents (18 males; 18 females) with SCD and their caregivers completed the SMSC at a median age of 16 years and actual disease knowledge 2 years later at the last pediatric visit. Thirty-two visited adult care prior to leaving pediatrics and thirty-two completed the first adult visit. Predictors of actual adolescent knowledge immediately prior to leaving pediatrics were caregiver's early perception of their adolescent's self-management skills (Figure). Disease knowledge associated with higher likelihood of meeting adult providers during pediatric care (Figure). Neither self-management assessments nor disease knowledge associated with completion of first adult visit (Figure).Conclusion: Caregivers are better evaluators of their adolescent's transition readiness than adolescent themselves, as demonstrated by a significant relationship between caregiver perceptions of their adolescent's self-management early in the transition process and adolescents' disease knowledge preceding departure for adult care. Adolescents' SCD knowledge level predicted future desire to engage in adult healthcare, demonstrated by the higher likelihood of visiting adult providers while in pediatric care. The lack of relationship between self-management and disease knowledge with completion of first adult visit indicates other possible barriers curtailing successful adult care transfer. Collectively, our findings support early engagement of caregivers in measuring adolescent transition readiness to guide subsequent transition programming in the SCD population. [Display omitted] DisclosuresPorter:NHLBI: Research Funding.

Stakeholders' perspectives and requirements on pain self-management for adolescents living with HIV/AIDS in Malawi: a cross-sectional qualitative study

ABSTRACT Malawi has one of the highest HIV prevalence rates (8.9%), and data suggest 27% pain prevalence among adolescents living with HIV (ALHIV) in Malawi. Pain among ALHIV is often under-reported and pain management is suboptimal. We aimed to explore stakeholders’ perspectives and experiences on pain self-management for ALHIV and chronic pain in Malawi. We conducted cross-sectional in-depth qualitative interviews with adolescents/caregiver dyads and healthcare professionals working in HIV clinics. Data were audio-recorded, transcribed verbatim and translated (where applicable) then imported into NVivo version 12 software for framework analysis. We identified three main themes: (1) Experiencing “total pain”: adolescents experienced physical, psychosocial, and spiritual pain which impacted their daily life activities. (2) Current self-management approaches: participants prefer group-based self-management approaches facilitated by healthcare professionals or peers at the clinic focussing on self-management of physical, psychosocial, and spiritual pain. (3) Current pain strategies: participants used prescribed drugs, traditional medicine, and non-pharmacological interventions, such as exercises to manage pain. A person-centred care approach to self-management of chronic pain among ALHIV is needed to mitigate the impact of pain on their daily activities. There is a need to integrate self-management approaches within the existing structures such as teen clubs in primary care.

Mobile health use predicts self-efficacy and self-management in adolescents with sickle cell disease.

Sickle cell disease (SCD) is associated with significant health challenges that often worsen during adolescence. Living with SCD requires a substantial amount of self-management and mobile health (mHealth) holds considerable promise for assessing and changing behaviors to improve health outcomes. We integrated a mobile app as an adjunct to a group intervention (SCThrive) and hypothesized that more engagement with the mHealth app would increase self-management and self-efficacy for adolescents and young adults (AYA) with SCD. Twenty-six AYA ages 13-21 years (54% female; 46% HbSS genotype; all African-American/Black) received six weekly group sessions (three in-person, three online). Participants were provided with the mobile app (iManage for SCD) to record progress on their self-management goals and log pain and mood symptoms. The Transition Readiness Assessment Questionnaire (TRAQ-5) assessed self-management skills and the Patient Activation Measure (PAM-13) assessed self-efficacy at baseline and post-treatment. Logging on to the app more frequently was associated higher mood ratings (r = .54, CI[.18, .77], p = .006) and lower pain ratings (r = -.48, CI[-.77, -.02], p = .04). Regression analyses demonstrated that after controlling for scores at baseline, the number of logins to the app predicted self-management skills (p = .05, η2 = .17) and possibly self-efficacy (p = .08, η2 = .13). Our study findings indicate that it can be challenging to maintain engagement in mHealth for AYA with SCD, but for those who do engage, there are significant benefits related to self-management, self-efficacy, and managing pain and mood.

Mobile Application for Promoting Gluten-Free Diet Self-Management in Adolescents with Celiac Disease: Proof-of-Concept Study.

Celiac disease (CD) is a chronic disease treated by maintaining and managing a lifelong restrictive gluten-free diet. The purpose of this study was to develop a mobile application, Plan My C-Day, to promote self-management skills among youth with CD during adolescence—a time when decreased adherence often occurs—and examine its usability among adolescents with CD. Plan My C-Day contains three simulations of activities involving eating out and actions to take when preparing for these events. It was developed and pilot tested by 13 adolescents with CD. Application use and user perception data were collected and analyzed. Participants chose 160 actions within the simulations. For over 75% of participants, the time to complete the simulation decreased from the first to the third (last) simulation by an average of 50%. The average reported usability perception was 3.71 on a scale of 1 to 5, with system ease of use and ease of learning obtaining the highest scores. This study demonstrated that the Plan My C-Day mobile application’s self-management content, features, and functions operated well and that the simulations were easy to understand and complete. Further development will include the option to add self-created activities and adaptation to different languages and cultures.

Development and Validity Testing of a Type 1 Diabetes Resource for 10-19-Years Old Adolescents in China

PurposeThis phase 1 study aimed to develop a Type 1 diabetes (T1DM) educational resource for adolescents (10–19 years) in China, and to test its validity for improving diabetes knowledge, self-efficacy and adherence. Design and methodsThis phase 1 study was carried out in four phases: preliminary development of the Type 1 diabetes educational resource in English based on the health belief model (HBM) and the International Society for Pediatric and Adolescent Diabetes (ISPAD) Consensus Guidelines 2014; translation of the resource into Chinese; readability testing of the resource; and face and content validity testing for scientific and clinical accuracy. ResultsType 1 diabetes educational resource with 17 “topics” in four sections was developed for 10–19-years old adolescents in China. Cartoon story, images, stories, questions & answers, and quizzes were used to attract adolescents' interest. Furthermore, the educational resource was confirmed to be understandable among adolescents, clinically accurate, and consistent with its purpose. ConclusionsThis resource with good readability and content validity is a potential facilitator for diabetes education and self-management in adolescents with T1DM in China. Practical implicationsThis type 1 diabetes resource can be used to educate adolescents with T1DM as a validated resource after further testing in an effectiveness study.

The Impact of Social Isolation during the COVID-19 Pandemic on Physical and Mental Health: The Lived Experience of Adolescents with Obesity and Their Caregivers.

Adolescence is a complex developmental phase, made more complex by obesity and the social isolation imposed by the COVID-19 pandemic. The literature related to the impact of social isolation on obesity self-management in adolescents is scant and inconsistent. This paper describes the phenomenon from the perspectives of a sample of adolescents with obesity enrolled in an inpatients’ multidisciplinary rehabilitation program for weight-loss and their caregivers, and its impact on different life domains. Individual semi-structured ad hoc interviews were conducted with 10 adolescent-caregiver dyads, and narratives were qualitatively investigated using an interpretative phenomenology approach to data. Twenty participants took part in the study. The major themes that emerged from this study fall into five basic categories: (1) COVID-19 as an opportunity to reconsider what makes a good life; (2) Persistence in life; (3) Empowering relationship; (4) Daily routine in quarantine; (5) Lives on hold. Understandings drawn from this study may assist health care professionals in providing holistic support, and guidance to adolescents with weight-related issues and their caregivers who experience social isolation during the COVID-19 pandemic.

Self-management, self-care, and self-help in adolescents with emotional problems: a scoping review protocol.

The objective of this scoping review is to clarify the ways in which the concepts of self-management, self-care, and self-help are defined in the literature in the context of adolescents with emotional problems, as well as to identify the strategies or techniques that have been proposed to facilitate self-management, self-care, and self-help for this group. There is evidence that emotional problems are rising amongst adolescents, yet timely access to specialist mental health treatment is limited to adolescents with greater severity of mental health difficulties. Nonetheless, self-management, self-care, and self-help strategies may be used by adolescents. Given the overlap in existing definitions and the lack of clarity around these concepts in a youth mental health context, a scoping review of the literature is warranted. The review will consider studies that involve adolescents aged 10 to 19 years with symptoms of emotional problems. These problems do not require a formal diagnosis and may be based on self-reporting. Studies that reference self-management, self-care, or self-help in this population, in any setting, will be included. Strategies may be provided by a mental health professional or discovered by the adolescent on their own. Quantitative, qualitative, economic, and mixed methods studies, as well as systematic, scoping, and literature reviews, are eligible for inclusion. MEDLINE, Embase, PsycINFO, Web of Science, CINAHL, Google Scholar, and MedNar will be searched for English-language texts from the year 2000 onward. A map or typology of definitions will be presented alongside a narrative summary of the results.

The Relationship Between Executive Functioning, Type 1 Diabetes Self-Management Behaviors, and Glycemic Control in Adolescents and Young Adults

Understanding barriers to self-management behaviors and glycemic stability may inform specific needs for behavior change in adolescents and young adults with type 1 diabetes (T1D). The current review aims to systematically synthesize the literature on the relationships between executive functioning, self-management, and A1C in adolescents and young adults with T1D. Fifteen studies were retained in the current review. Study quality assessment for the majority of the studies were "Fair" or "Good." This review highlights several advances in research design, including use of longitudinal designs, data from multiple informants, and use of objective measures. Adolescents and young adults reported that more executive functioning weaknesses were related to decreased self-management behaviors and higher A1C. The current review demonstrated that self-perceived executive functioning weaknesses negatively impact self-management behaviors and A1C. Future research is needed to determine the utility of objective measures in assessing the relationships between executive functioning, T1D self-management, and A1C.

Validation of a Portable Game Controller to Assess Peak Expiratory Flow Against Conventional Spirometry in Children: Cross-sectional Study.

BackgroundInternational asthma guidelines recommend the monitoring of peak expiratory flow (PEF) as part of asthma self-management in children and adolescents who poorly perceive airflow obstruction, those with a history of severe exacerbations, or those who have difficulty controlling asthma. Measured with a peak flow meter, PEF represents a person’s maximum speed of expiration and helps individuals to follow their disease evolution and, ultimately, to prevent asthma exacerbations. However, patient adherence to regular peak flow meter use is poor, particularly in pediatric populations. To address this, we developed an interactive tablet-based game with a portable game controller that can transduce a signal from the user’s breath to generate a PEF value.ObjectiveThe purpose of this study was to evaluate the concordance between PEF values obtained with the game controller and various measures derived from conventional pulmonary function tests (ie, spirometry) and to synthesize the participants’ feedback.MethodsIn this cross-sectional multicenter study, 158 children (aged 8-15 years old) with a diagnosis or suspicion of asthma performed spirometry and played the game in one of two hospital university centers. We evaluated the correlation between PEF measured by both the game controller and spirometry, forced expiratory volume at 1 second (FEV1), and forced expiratory flow at 25%-75% of pulmonary volume (FEF25-75), using Spearman correlation. A Bland-Altman plot was generated for comparison of PEF measured by the game controller against PEF measured by spirometry. A post-game user feedback questionnaire was administered and analyzed.ResultsThe participants had a mean age of 10.9 (SD 2.5) years, 44% (71/158) were female, and 88% (139/158) were White. On average, the pulmonary function of the participants was normal, including FEV1, PEF, and FEV1/forced vital capacity (FVC). The PEF measured by the game controller was reproducible in 96.2% (152/158) of participants according to standardized criteria. The PEF measured by the game controller presented a good correlation with PEF measured by spirometry (r=0.83, P<.001), with FEV1 (r=0.74, P<.001), and with FEF25-75 (r=0.65, P<.001). The PEF measured by the game controller presented an expected mean bias of –36.4 L/min as compared to PEF measured by spirometry. The participants’ feedback was strongly positive, with 78.3% (123/157) reporting they would use the game if they had it at home.ConclusionsThe game controller we developed is an interactive tool appreciated by children with asthma, and the PEF values measured by the game controller are reproducible, with a good correlation to values measured by conventional spirometry. Future studies are necessary to evaluate the clinical impact this novel tool might have on asthma management and its potential use in an out-of-hospital setting.

Parent-Child Relationship Quality as a Mediator of the Association between Perceived Stress and Diabetes Self-Management in Adolescents With Type 1 Diabetes.

Diabetes self-management is suboptimal in adolescents with type 1 diabetes (T1D), including those in China. The aim of the study was to investigate the impact of parent-child relationship quality on diabetes self-management. Data were collected by a self-report survey among 122 Chinese adolescents from April to July 2017. The data were analyzed using a one-way analysis of variance, descriptive analyses, correlation analyses, and mediation analyses. The mean age was 13.8 (range, 10-18) years, and the mean diabetes duration was 4.1 (±3.1) years. About half of the adolescents with T1D experienced high levels of perceived stress. Parent-child relationship quality mediated the associations between perceived stress and collaboration with parents, diabetes care activities, and diabetes communication on aspects of diabetes self-management (ps < 0.05). To reduce the negative impacts of perceived stress on diabetes self-management in this population, parent-child relationship quality should be considered an important element of family-based interventions and clinical practice.

Mobile Health Use Predicts Self-Efficacy and Self-Management in Adolescents with Sickle Cell Disease

Background: Sickle cell disease (SCD) is associated with medical challenges that often worsen for adolescents and young adults (AYA) when caregivers begin to transfer responsibility for care. Living with SCD requires self-management and self-efficacy and is a critical concern for AYA as they navigate complex medical systems. However, previous research indicates that AYA with SCD often lack the ability, confidence, and skills to manage their disease effectively. As most AYA with SCD are now "technology natives," mobile health (mHealth) holds considerable promise for assessing and changing behaviors to improve health outcomes. In a previous feasibility and acceptability study, AYA with SCD provided qualitative feedback that they would use mHealth (a co-designed mobile app) and that it was beneficial for tracking health behaviors. Thus, we integrated the mHealth app into a group intervention (SCThrive) and hypothesized that more engagement with the mHealth app would result in increased self-management and self-efficacy for AYA with SCD. Methods: Our analysis from a single-site, randomized control trial (NCT02851615) assessed data from only AYA in the treatment arm (N = 26) who received the SCThrive intervention and used the mHealth app. The sample included AYA with SCD aged 13 to 21 years (Mage = 16.7 years; 54% female; 46% HbSS genotype; all African American/Black) who received six-weekly group sessions (3 in-person, 3 online). All SCThrive participants were provided with the mobile app (iManage) on an iPad. The Transition Readiness Assessment Questionnaire (TRAQ-5) assessed self-management skills and the Patient Activation Measure (PAM-13) assessed self-efficacy at baseline and posttreatment. We also assessed engagement (logins), confidence and completion of self-management goals (e.g., exercising, take medications), pain diary entries, and mood symptoms recorded on the iManage app (see Figure 1). Results: Preliminary analyses indicated that most AYA with SCD logged on to the iManage app (Mlogins = 7.8, SD = 9.1, range = 1 - 45) and viewed their pain diary (Mviews = 5.7, SD = 9.1, range = 1 - 45) at least once a week. Eighty-eight percent of AYA saved a pain diary entry and the most commonly used strategies for managing pain episodes were resting (22%), drinking water (19%), and using distraction (8%). AYA viewed their self-management goals about once every 11 days (Mdays = 11.24, SD = 13, range = 0 - 57). All AYA created (Mgoals = 5.7, SD = .72, range = 4 - 7), but only 54% of AYA completed at least one self-management goal. Of the 149 self-management goals created by the entire sample, only 37 (25%) were recorded as completed. AYA with a confidence level of 7 or lower were least likely to complete their self-management goals (14%) (see Figure 2). Correlation analyses demonstrated that logging on to the iManage app more frequently was associated with completing more self-management goals (r = .38), documenting pain symptoms more frequently (r = .54), and lower mood ratings (r = .54). Primary analyses demonstrated that after controlling for scores at baseline, the number of logins to the iManage app (p = .08, η2 = .13) predicted self-efficacy (PAM-13) and (p = .05, η2 = .17) self-management skills (TRAQ-5). Completing more self-management goals on the iManage app did not predict scores on the PAM-13, but, surprisingly, predicted lower scores (less self-management) on the TRAQ-5 (p = .08, η2 = .14). Conclusion: Lessons learned from our study indicate that it can be challenging to maintain engagement in mHealth for AYA with SCD, but for those who do engage there are significant benefits related to self-management goals, documenting pain symptoms, and mood. Supporting hypotheses, engaging more with the iManage app was related to higher-reported self-efficacy and self-management skills. Some AYA engaged with the app infrequently and did not create or complete self-management goals; others were "super users" and logged into the app daily. Increasing the frequency of reminder messages, encouraging more interactions with peers, and tailoring the opportunity to earn incentives are potential modifications for future interventions. However, our findings indicate that a mHealth app can be effectively integrated into a clinical trial and is related to positive outcomes. Although there are challenges to address, mHealth has the potential to bring about changes in behavior and improve health in the SCD population. Disclosures No relevant conflicts of interest to declare.

Responsibility sharing for adolescents with type 1 diabetes: A scoping review.

The term 'Responsibility Sharing', albeit poorly defined, has emerged from the diabetes literature, to describe a distinct mechanism for comprehensively managing the characteristic shift in responsibility that underpins the transition to self-management for adolescents. A scoping review, following the PRISMA-ScR guidelines, distilled the literature from seven databases to answer the questions: What is responsibility sharing? Who are the key stakeholders? What factors affect responsibility transaction? What are its recognized outcomes? How is responsibility shared? Responsibility sharing is a transactional arrangement between youth and their caregiver/s that functions to repeatedly and flexibly apply ownership to the management of diabetes care tasks, across the course of adolescence. In the main, responsibility sharing was associated with better metabolic and/or psychosocial outcomes. Effective responsibility sharing was seen as being responsive to adolescent capacity and driven by autonomy supportive, sustained communication patterns that enable mutually agreeable responsibility assumption by all stakeholders. Different perspectives on responsibility sharing for adolescents with Type 1 diabetes, and the lack of a universal definition, have led to discordance within the literature about its operationalization and measurement. This paper proposes a definition of responsibility sharing for future researchers to apply.