Self-management In Youth Research Articles

Growth of condition-related knowledge among youth with spina bifida: associations with neurocognitive functioning and self-management skills.

This study aims to characterize the growth in condition-related knowledge in youth with spina bifida (SB), identify neurocognitive predictors of growth, and examine associations between growth in knowledge and subsequent levels of medical self-management skills. Participants were recruited from a larger longitudinal study involving 140 youth with SB and caregivers, who completed questionnaires and interviews every 2 years over 8 years. The current study included the youth report of condition-related knowledge and medical self-management skills. Youth attention and executive functioning were assessed via parent and teacher reports and performance-based assessment. Latent growth curves were conducted in Mplus Version 8 (Múthen, L. K., & Múthen, B. O. [1998]. Mplus User's Guide. [Eighth]. Muthén & Muthén) to examine change over time in youth-reported condition-related knowledge. Neurocognitive variables were included as predictors of growth in knowledge and regression analyses were used to predict medical self-management skills from growth in condition-related knowledge. Youth condition-related knowledge increased linearly. Better youth performance on working memory and attention performance-based tasks predicted a higher intercept for condition-related knowledge at T1, but not slope. Teacher and parent reports of inattention and executive dysfunction were not consistent predictors of intercept and growth. Slope of condition-related knowledge was not predictive of subsequent youth self-management skills. Youth with SB gain condition-related knowledge over time. However, executive dysfunction and inattention may impede gains in condition-related knowledge. Thus, executive functioning supports, attention-related interventions, and psychoeducation may support condition-related knowledge gains and later medical self-management skills, but further research assessing family and cultural factors is needed.

Parent[sbnd]youth interactions: Transitioning to toileting self-management in spina bifida patients

PurposeSpina bifida (SB) involves neurogenic bladder and bowel deficits. While parents manage the bladder and bowel disorders of their youth in the early years, the youth themselves must eventually take responsibility for their own management. However, the experience of shifting responsibility for complex toilet management from the parents to the youth has not been thoroughly investigated. Therefore, as exploratory research, the present study aimed to reveal the interactions between parents and youths with SB during the time of increasing responsibility for bladder and bowel management (i.e., the transition phase). MethodsTwelve parent–youth pairs (youths with SB aged 11–18 years) participated in dyadic interviews, and a parent–youth transition experience was categorized by the context of parent–youth interactions and analyzed using the grounded theory approach. ResultsThe results indicated that parents provide professional, complete bladder and bowel management until their youth reach physical and mental maturity. During the transitional phase, they work together to master youth self-management in interactions described as “share, try, and decide through parent–youth interactions”. Finally, the youth are able to master control of their own bladder and bowel management without requiring assistance from their parents. ConclusionsAlthough parent–youth interactions are not always present during the pre- and post-transition phases, the parent–youth relationship acts to facilitate the independence of the youth by taking advantage of the parent–youth subsystem during the transitional phase. Interventions during these challenging periods could help facilitate the transition to bladder and bowel self-management among the youth.

Trajectories of self-management and independence in youth with spina bifida: Demographic predictors of growth.

The purpose of this study was to examine the trajectories of condition and independent living self-management in youth with spina bifida (SB). A diverse sample of adolescents and young adults (AYAs) with SB completed the Adolescent/Young Adult Self-Management and Independence Scale (AMIS-II) across four time points. Parents reported on demographic characteristics including age, sex, race/ethnicity, and family income. Growth in self-management and its subscales (condition and independent living) were estimated using linear mixed-effect models as a function of respondents' demographics. This study included 99 respondents age 18 to 27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and about a third were Hispanic/Latino (32.3%). Eighty-seven AYAs (87.9%) had myelomeningocele. The lesion level was 31.3% sacral, 48.5% lumbar and 18.2% thoracic. A third of the families earned less than 50K. Overall, self-management growth was dependent on age, sex, and race/ethnicity, but not income. Growth in condition self-management depended on sex; only males demonstrated increasing growth ( = 0.11, p < 0.001). Black participants endorsed higher increasing total and condition self-management when compared with White ( diff = 0.17 and 0.17, respectively, both p < 0.05) and Hispanic/Latino ( diff = 0.18 and 0.21, respectively, both p = 0.02) respondents. This study provides evidence of differences in growth of self-management by demographic/social determinants of health. Possible reasons for differences are discussed. Predictors of changes in self-management behaviours over time in young adults with SB can identify subgroups in need of further study.

Self-Management in Youth With Spina Bifida: Associations With Parent Factors in the Context of a Summer Camp Intervention.

To investigate cross-sectional and longitudinal associations between parent factors and self-management for youth with spina bifida (SB). Participants were 89 camper-parent dyads recruited for a summer camp program for youth with SB (Myouthage = 12.2 years); 48 of these families participated across 2 years. Campers and parents completed assessments at Time 1 (pre-camp) and Time 3 (post-camp) for one or two summers. Parents reported on demographics, their own adjustment, perceptions, attitudes, and behaviors, and youth condition-related responsibility and task mastery. Youth also reported on condition-related responsibility. Hierarchical multiple regression analyses and multilevel modeling were used to examine relationships between parent factors and youth self-management. Parents' expectations for future goal attainment were positively associated with camper responsibility and task mastery, and these associations were moderated by camper age (only significant for older campers). When examining changes over one summer, parental expectations for the future were significantly associated with changes in campers' condition-related task mastery. When examining trajectories across summers, parental perception of child vulnerability was negatively associated with the slope of condition-related responsibility and parents' expectations for future goal attainment were positively associated with the slope of task mastery. Parent perceptions and behaviors may be important targets for assessment and intervention when promoting condition-related independence for youth with SB.

Motivational interviewing to improve self-management in youth with type 1 diabetes: A randomized clinical trial

PurposeEffective interventions are needed to help adolescents with T1D develop independent self-management skills to prevent commonly observed deterioration of disease self-management resulting in poor health outcomes. Using a prospective RCT design, we assessed the impact of a nurse-led education program based on motivational interviewing (MI) in youth with Type 1 diabetes (T1D). Design and methodsAfter parental consent and youth assent, we prospectively randomized 66 adolescents 13–18 years old with T1D to either usual care (every 3 months visit with pediatric endocrinologist) or usual care supplemented by 2 in-person and 4 follow-up phone calls with a nurse educator in a pediatric endocrinology clinic of the University Hospital Farhat Hached, Sousse, Tunisia. We used MI sessions to support youth general and disease specific self-management skills. Outcomes were change, between baseline and 6 months, in TRAQ (a validated measure of youth self-management) scores and HbA1c values. ResultsMean TRAQ scores (based on a 5-point Likert scale) increased by 1.44 points (s.d. = 0.56) in the Intervention Group versus 0.26 points (s.d. = 0.34) in the control group (p < 0.001). The mean HbA1C value decreased in the intervention group by 0.95 units versus a decrease of 0.12 units in the control group (p = 0.047). ConclusionWe found that a brief, nurse-led MI-based educational intervention, integrated into specialty pediatric care, resulted in a significant improvement in both self-reported self-management skills and in HbA1c values.Trial registration: Registered in ClinicalTrials.gov Identifier: NCT04798937

542-P: Club: A Novel Approach to Improve Self-Management in Youth with Type 2 Diabetes

Background: Adherence with treatment recommendations is challenging for many youths with type 2diabetes (T2D). Interventions to address their specific barriers are needed. Objective: CLUB (Control your diabetes by Learning life skills and Understanding your Barriers) is a group intervention that targets the unique psychosocial needs of youth with T2D. The objectives are to foster peer support, enhance diabetes-related skill acquisition, and facilitate emotional adjustment to T2D and its management. Methods: Youth with HbA1c &amp;gt; 8% are referred to CLUB. CLUB includes four sessions over a 6-monthperiod. Youth meet as a group and parents convene separately. A pediatric psychologist facilitates the youth group. A bilingual nurse practitioner facilitates parent groups in English and Spanish. CLUB participants were matched with controls by gender, age, and duration of diagnosis. Results: Of the 105 referred patients, 64 patients attended at least one session and 42 patients completed at least three sessions. Mean age of youth in the latter cohort was 15.3 years (SD 2.0yrs) and 70% were female. Ethnic background of the participants was predominantly Latinx. Median duration of diabetes diagnosis was 2.0 years (IQR 2.2 yrs). Mean HbA1cbaseline was 11.0%(SD 2.2%). Baseline HbA1c did not differ between cohorts. CLUB participation did not improveHbA1c (mean change in HbA1cControl =-0.14% and HbA1cCLUB=-0.32%, P=0.7283), but there was a positive correlation between HbA1c change (HbA1cfinal-HbA1cbaseline) and the time to completion of CLUB (P=0.0087). Conclusion: CLUB is an innovative program that targets psychosocial barriers for youth with T2D. Though participants’ HbA1c did not improve, youth and their parents reported enjoyment of their experience. Preliminary data suggests that consistent participation in CLUB yielded a greater reduction in HbA1c compared to program completion over longer periods of time. This model and its potential to improve T2D health behaviors for diverse youth will be further examined. Disclosure N. T. Chang: None. C. E. Muñoz: None. P. M. Yasuda: None. L. Chao: None.

An Evidence-Based Framework for Implementation of a School–Community Partnership

School-community partnerships (SCPs) are collaborative efforts between schools and community organizations geared toward improving the health of school-age children through care coordination. These partnerships are ideal for youth with acute and chronic illness because they can implement evidence-based interventions and offer skills and education to support youth self-management and academic success. Utilizing the chronic condition of asthma as an exemplar, this article highlights several successful SCPs and how they are mutually beneficial to both the school and community. Additionally, this article offers strategies for stakeholders, including school nurses, to establish an SCP. SCPs lay the foundation for supporting community- and school-based health and lend themselves to a healthier future for youth.

The Impact of COVID-19 on Pediatric Adherence and Self-Management.

The COVID-19 pandemic has presented unique circumstances that have the potential to both positively and negatively affect pediatric adherence and self-management in youth with chronic medical conditions. The following paper discusses how these circumstances (e.g., stay-at-home orders, school closures, changes in pediatric healthcare delivery) impact disease management at the individual, family, community, and healthcare system levels. We also discuss how barriers to pediatric adherence and self-management exacerbated by the pandemic may disproportionately affect underserved and vulnerable populations, potentially resulting in greater health disparities. Given the potential for widespread challenges to pediatric disease management during the pandemic, ongoing monitoring and promotion of adherence and self-management is critical. Technology offers several opportunities for this via telemedicine, electronic monitoring, and mobile apps. Moreover, pediatric psychologists are uniquely equipped to develop and implement adherence-promotion efforts to support youth and their families in achieving and sustaining optimal disease management as the current public health situation continues to evolve. Research efforts addressing the short- and long-term impact of the pandemic on pediatric adherence and self-management are needed to identify both risk and resilience factors affecting disease management and subsequent health outcomes during this unprecedented time.

Sleep and Glycemia in Youth With Type 1 Diabetes.

Short sleep duration and quality are problems for many youth, and are associated with difficulties in executive function. Our purpose was to describe subjective and objective sleep characteristics and their associations with executive function, stress and coping, adjustment, and self-management in youth with type 1 diabetes (T1D). Youth with T1D (N = 40; mean age, 13.4 ± 1.9 years; 60% female; 77.1% non-Hispanic white; diabetes duration, 7.1 ± 4.6 years; and hemoglobin A1c, 8.2 ± 1.2%) wore an actigraph and a continuous glucose monitor for 3-7 days and completed questionnaires. Descriptive and bivariate analyses were conducted. Sleep variability was associated with stress and depressive symptoms, as well as more glucose variability. Consistent rest-activity rhythm timing was associated with fewer trait anxiety symptoms. Robust rhythms were associated with better diabetes self-management. Providers should routinely assess sleep habits in youth, especially those with T1D. Improving consistency in sleep timing and sleep duration may be a potential therapeutic target to improve diabetes clinical outcomes.

955-P: Evaluating Early Initiation of Continuous Glucose Monitoring (CGM) among Youth Diagnosed with Type 1 Diabetes (T1D)

Background: CGM has glycemic and psychosocial benefits. The current study sought to evaluate the specific impact of introducing CGM soon after diagnosis of T1D. Methods: A sample of 55 youth recently diagnosed with T1D were randomized to either an intervention (start Dexcom G5 CGM within 1 month of diagnosis) or control (monthly blinded CGM use) condition. HbA1c data and youth and parent surveys were collected at baseline, 13 and 26 weeks and glucose levels were measured via blinded or unblinded CGM. T-tests were used to compare groups based on glycemic and psychosocial outcomes. Results: Participant ages ranged from 3-18 (mean 11.1 ± 3.6years). On average, youth in the intervention group spent less time in hypoglycemia at 13 (2.0% vs. 7.5%, p=0.002) and 26 (1.9% vs. 4.9%, p=0.056) weeks and had elevated scores on the Diabetes Self Management Profile at week 13 (54.5 vs. 43.9 p=0.021) and more openness with glucose monitoring at weeks 13 (15.0 vs. 12.2, p=0.057) and 26 (16.42 vs. 12.12, p=0.014). Conversely, intervention group youth reported worse quality of life (QoL) at 13 weeks (8.5 vs. 3.0, p=0.020). At 26 weeks, the intervention group had slightly higher diabetes distress among youth (32.2 vs. 25.4, p=0.089) but lower diabetes distress among parents (42.5 vs. 50.9, p=0.050). Adding to prior reports from this study, these results show reduced hypoglycemia, improved attitudes toward diabetes technology, and satisfaction with glucose monitoring as well as decreased parent reported youth QoL. Conclusion: Introducing CGM soon after diagnosis appears to have substantial benefits, including prevention of hypoglycemia and bolstering youth self-management practices and openness to glucose monitoring. Given that early CGM initiation may negatively impact QoL in youth with T1D, as indicated by both youth and parent report, youth with T1D may benefit from education around use of CGM as well as psychosocial support for those with lower QoL. Disclosure J.J. Wong: None. S. Clay: None. G.P. Forlenza: Advisory Panel; Self; Dexcom, Inc. Consultant; Self; Medtronic MiniMed, Inc., Tandem Diabetes Care. Research Support; Self; Dexcom, Inc., Insulet Corporation, Medtronic MiniMed, Inc., Tandem Diabetes Care. S. Hanes: None. R. Wadwa: Advisory Panel; Self; Eli Lilly and Company. Research Support; Self; Beta Bionics, MannKind Corporation, Novo Nordisk Inc., Tandem Diabetes Care, Xeris Pharmaceuticals, Inc. Other Relationship; Self; Dexcom, Inc. K.K. Hood: Consultant; Self; Lilly Diabetes. Research Support; Self; Dexcom, Inc. Speaker's Bureau; Self; Johnson &amp; Johnson Diabetes Institute. Funding Dexcom, Inc.

Assessing Disease Knowledge and Self-Management in Youth With Sickle Cell Disease Prior to Transition.

Transition of medical care from pediatrics to adult can be challenging and difficult. Until the 1970s, only half of patients diagnosed with sickle cell disease (SCD) reached adulthood. As a result of patients living longer, there is a growing need to understand factors that influence readiness to transition. This descriptive study examined age-specific SCD knowledge, self-management skills of patients, and education goals in a convenience sample of patients and their parents. One hundred eighty-three transition surveys were distributed during scheduled hematology clinic visits. Surveys were analyzed with descriptive statistics to determine differences of knowledge between age groups, self-care skills, vocational supports, and educational goals. The parent group consists of children aged 0 to 4 years (32), 5 to 8 years (52), 9 to 11 years (12); the child group consists of children aged 9 to 11 years (24) and 12 to 15 years (31); and adolescent and young adult (AYA) group consists of children aged 16 to 21 years (32). Indeed, 50% of parents of the 0 to 4 years age group and 33% of 5 to 8 years age group knew their child's baseline hemoglobin. Only 38% of patients aged 16 to 21 years knew their baseline hemoglobin. However, 79% of patients aged 9 to 11 years, 74% of patient aged 12 to 15 years, and 78% of AYAs could name their hematology provider. Only 66% of patients aged 16 to 21 years knew what symptoms required medical attention. Most patients and parents had adequate basic knowledge regarding SCD. AYAs lack the disease knowledge necessary to transition care away from parents to become more independent. An assessment for transition readiness should be ongoing to include disease-specific knowledge and self-management skills.

Supporting Self-Management in Children and Adolescents With Complex Chronic Conditions.

Self-management improves health outcomes in chronic illness not only by improving adherence to the treatment plan but also by building the individual's capacity to navigate challenges and solve problems. Support for self-management is a critical need among children and adolescents with (medically and/or socially) complex chronic conditions. Self-management support refers to services that health systems and community agencies provide to persons with chronic illness and their families to facilitate self-management; it is a collaboration between the patient, family, and care providers. Evidence has guided the development of self-management support approaches and tools for adults and has led to an increased adoption of best practices in adult chronic illness care. However, adult models fail to account for some key differences between children and adults, namely, the integral role of parents and/or caregivers and youth development over time. There is a need for self-management support models that take into account the developmental trajectory across the pediatric age range. Effective approaches must also recognize that in pediatrics, self-management is really shared management between the youth and the parent(s) and/or caregiver(s). Health systems should design care to address self-management for pediatric patients. Although clinicians recognize the importance of self-management in youth with complex chronic conditions, they need standardized approaches and tools to do the following: assess the self-management skills of youth and families, assess modifiable environmental influences on chronic conditions, collaboratively set self-management goals, promote competence and eventual autonomy in youth, share the responsibility for self-management support among nonphysician members of the health care team, and leverage community resources for self-management support.

Transition tools and access to adult primary care

PurposeThe transition from pediatric to adult health care is challenging for youth with autism spectrum disorder (ASD). Many tools have been developed to facilitate transition but studies have not assessed their utility or readiness to be implemented in primary care practices. The purpose of this paper is to rate existing health care transition tools to identify tools ready for use in primary care clinics and develop a set of transition principles.Design/methodology/approachFour pediatric and family medicine providers from community health centers reviewed 12 transition tools and provided ratings and in-depth responses about the usefulness and feasibility of each tool through online surveys and telephone interviews. A conference call was used to discuss the findings and develop a set of transition principles.FindingsThe top rated tools included three youth self-management tools, two tools focused on ASD information and one tool focused on communication. No one tool was top rated by all providers and none of the tools was ready to be implemented without revisions. The transition principles developed focused on the use of selected tools to involve all youth in regular conversations about transition at every well child visit beginning at age 14 and adapting that process for youth with special needs.Originality/valueThis study is unique in asking primary care providers to assess the applicability of incorporating existing and publicly available transition tools in their own practices and developing a set of transition principles.

Translation and psychometric properties of the Persian version of self-management of type 1 diabetes for adolescents.

The present study was conducted to translate and assess the validation of the measure of self-management of type 1 diabetes for adolescents that developed by Schilling et al [Schilling LS, Knafl KA, Grey M. Changing patterns of self-management in youth with type I diabetes. J Pediatr Nurs 2006;21:412-24]. The first stage of the study involved the translation of the measure of self-management of type 1 diabetes for adolescents into Persian based on the model proposed by Wild et al. in two versions [Wild D, Grove A, Martin M, Eremenco S, McElroy S, et al. Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: report of the ISPOR task force for translation and cultural adaptation. Value Health 2005;8:94-104; Wild D, Eremenco S, Mear I, Martin M, Houchin C, et al. Multinational trials - recommendations on the translations required, approaches to using the same language in different countries, and the approaches to support pooling the data: the ISPOR patient-reported outcomes translation and linguistic validation good research practices task force report. Value Health 2009;12:430-40]. The translated versions were reviewed in consultation sessions with experts and the more appropriate items were selected and the final version was translated back into English in two versions and was then sent to the measure's designer for confirmation. The content validity of the measure was then evaluated by a group of experts and found to be acceptable. The next stage evaluated the measure's construct validity. This measure contains 52 items classified under five subscales. The confirmatory factor analysis was performed to assess the measure's construct validity and was found to be acceptable. For evaluating the reliability of the measure, its internal consistency was assessed through calculating its Cronbach's alpha and intra-class correlation. The measure's consistency was measured through calculating its test-retest reliability. The assessment of the measure's content validity revealed a content validity index of 0.98. For the construct validity of the measure using the confirmatory factor analysis, the following figures were obtained: NFI=0.97, RMSA=0.001, AGFI=0.81, IFI=0.833, GFI=0.83. In the assessment of the measure's reliability, the intra-class correlation showed an overall Cronbach's alpha of 0.88. The test-retest showed a consistency of 0.73 for the measure. The validation of the 48-item measure revealed that it can be used in the population of Iranian adolescents with type 1 diabetes (8 items changed their subscales and 4 items were removed).

Concerns, Barriers, and Recommendations to Improve Transition from Pediatric to Adult IBD Care: Perspectives of Patients, Parents, and Health Professionals.

The current transition literature is a fragmented assortment of studies examining select subsections of transition stakeholders. Adolescent/young adult patients with IBD (40% transferred to adult care), parents, and health providers (53.8% adult providers) participated in 1 of 6 focus group interviews focused on concerns and needs surrounding transition to adult care. Data were analyzed through directed content analysis. Transition needs/concerns focused on (1) losing relationships with pediatric providers, (2) perceptions of poorer quality care from adult providers, (3) high parent involvement preventing the development of youth self-management skills, and (4) finances and insurance. Suggestions to improve transition to adult care included the following: (1) meeting alone with adolescents during appointments, (2) providing concrete guidance on how/when to transition responsibility, and (3) increasing accountability for adolescents. Recommendations to improve transfer included the following: (1) providing more information about the transfer process and adult providers, (2) obtaining peer support and mentoring, and (3) setting goals and deadlines for transfer. Inclusion of several stakeholder groups allowed for the identification of commonalities across groups as well as their unique needs and concerns surrounding transition to adult care. Concerns and recommendations by participants should be targeted in future transition program efforts.

Are two youth-focused interventions sufficient to empower youth with chronic health conditions in their transition to adult healthcare: a mixed-methods longitudinal prospective cohort study

ObjectivesTo assess use, utility and impact of transition interventions designed to support and empower self-management in youth with chronic health conditions during transition into adult healthcare.DesignA 4-year mixed-method prospective cohort...

Focus Groups for Developing a Peer Mentoring Program to Improve Self‐Management in Pediatric Inflammatory Bowel Disease

Inflammatory bowel disease (IBD) presents challenges for self-management in many areas. A peer mentoring program may offer advantages over other forms of self-management interventions because youth may be more receptive to learning self-management skills from a peer than from a parent or professional. The purpose of the present study was to identify themes from focus groups to inform development of a peer mentoring program for improving self-management in pediatric IBD. Focus groups were conducted for youth ages 12 to 17, stratified by age (3 groups; n = 14), young adults ages 18 to 20 (1 group; n = 5), and parents of the youth (3 groups; n = 17). Broad questions covered program goals, general program characteristics, mentor/mentee characteristics, and family involvement, and transcriptions were analyzed via directed content analysis, with the a priori codes specified as the broad questions above. Participants identified the primary goals of a program as support, role model, information/education, and fun. They described a program that would include a year-long, 1-on-1 mentor relationship with a peer who has had IBD for at least a year, educational group activities, fun activities that are not focused on IBD, expectations for in-person contact 1 to 2 times per month, and mentor-to-mentor and parent support. Many of the suggestions from the focus groups correspond with research findings associated with successful mentoring programs. Using participants' suggestions and empirically based best practices for mentoring may result in an effective peer mentoring program for improving self-management in youth with IBD.

Patterns and Predictors of Paternal Involvement in Early Adolescents’ Type 1 Diabetes Management Over 3 Years

To document trajectories of paternal involvement in diabetes management and examine bidirectional associations with diabetes outcomes across early adolescence. 3-year prospective assessment of paternal involvement, diabetes self-management, and glycemic control among 136 youth (age 9-12 at baseline) and their mothers and fathers. Unconditional growth curves demonstrated decreasing amount (maternal report: F(1,128) = 14.79; paternal report: F(1,111) = 12.95, ps < 0.01) and level of contribution (maternal report: F(1,131) = 23.6, p < .01) of paternal involvement. Controlling for covariates, lower youth self-management predicted an increasing slope in fathers' self-reported amount of involvement (b = -0.15 to -0.22, p < .05), and higher levels of fathers' self-reported level of contribution predicted a decreasing slope in youths' self-reported self-management (b = -0.01, p < .05). Like mothers, fathers' involvement declines modestly during early adolescence. Different aspects of paternal involvement influence or are influenced by youths' self-management. Communication about ways to enhance fathers' involvement before this transition may help prevent or reduce declining diabetes management and control common in adolescence.

Usability Testing of An Online Transition Program for Adolescents with Hemophilia

Abstract 4777 Purpose:This study explored the usability of a new Internet-based educational program of disease-specific information, self-management strategies and social support for adolescents with hemophilia. Methods:A comprehensive eight-module educational website was developed, based on results of an in-depth needs assessment. The website was tested for usability, using qualitative methods that included semi-structured, audio taped interviews and observation by a trained observer. To determine the usability and intuitiveness of the user interface of the “Teens Taking Charge: Managing Hemophilia Online” intervention, testing occurred in three cycles (4 participants per cycle). Participants were asked to work through standardized parts/features of the program, with changes to the prototype made after each cycle. Thematic analysis using a collaborative and iterative process was used to organize data into categories that reflected the emerging themes. Results:A purposive sample of twelve adolescents (range 12–18 years, mean 15.4 years) was recruited from a Canadian tertiary care center. All of the participants had access to a computer at home and felt comfortable using the Internet. Teens responded positively to the content, appearance and theme of the website (promoting self-management in youth with hemophilia). Subjects thought that it was easy to navigate, use and understand. Overall, they felt the content was appropriate and geared to meet the unique needs of adolescents with hemophilia. The multi-media components (videos, animations and quizzes) were thought to enrich the experience and make the program appealing. Adolescents provided ideas on how the website user-interface could be improved in terms of its usability (navigation, format and layout). Minor changes to the website user-interface were made and tested after the first and second cycles of testing. No further problems were identified in final cycle of testing. At the teens’ suggestion, additional social media elements were added (discussion board, “ask the expert” section) to build in elements of support and increase interactivity. Most participants felt this program would be helpful prior to transition of care and beyond. Conclusions:Usability testing was the crucial first step in ensuring the acceptability and ease of use of “Teens Taking Charge: Managing Hemophilia Online”. Findings from this study were used to refine the website prototype. A pilot study is underway to determine the feasibility of using a randomized controlled trial to study the Internet-based self-management program. Disclosures:Breakey:Baxter Bioscience: Research Funding, Salary Support. Ignas:Baxter Bioscience: Salary Support.

The relationship between diabetes self-management and metabolic control in youth with type 1 diabetes: an integrative review

The purpose of this integrative review was to describe the relationship between diabetes self-management and metabolic control in youth with type 1 diabetes and to explore factors which affect this relationship. In the past 15 years, research has indicated that youth with type 1 diabetes face considerable self-management challenges and are at increased risk for poor metabolic control. To enhance the development of behavioural interventions for youth with type 1 diabetes, the relationship between diabetes self-management and metabolic control needs to be more clearly elucidated. Research studies that examined the relationship between diabetes self-management and metabolic control in youth with type 1 diabetes were included (n = 18). The electronic databases searched included OVID, MEDLINE (1996 to present), SCOPUS (1996 to January 2010) and PubMed (1996 to January 2010). An integrative literature review was carried out using Whittemore's modified framework for data collection, analysis and synthesis. A positive relationship between diabetes self-management and metabolic control in youth with type 1 diabetes was supported in longitudinal studies and in studies where the mean age was >13 years. Factors influencing this relationship are identified. Measurement of self-management was quite variable. Interventions targeting self-management in youth with type 1 diabetes are indicated, particularly in families of diverse race and ethnicity globally. Further evaluation of the measures of self-management and more longitudinal research are also indicated.