Youth and parent preferences for an ideal AP system: It is all about reducing burden.

BACKGROUND: As new diabetes technologies improve to better manage glucose levels, users' priorities for future technologies may shift to prioritize burden reduction and ease of use. We used qualitative methods to explore youth and parent desired features of an "ideal" artificial pancreas (AP) system. METHODS: We conducted semi-structured interviews with 39 youth, ages 10-25 years, and 44 parents. Interviews were audio-recorded, transcribed, and coded using thematic analysis. RESULTS: Youth (79% female, 82% non-Hispanic white) were (M ± SD) ages 17.0 ± 4.7 years, with diabetes for 9.4 ± 4.9 years, and HbA1c of 8.4 ± 1.1%; 79% were pump-treated and 82% used CGM. Of parents, 91% were mothers and 86% were non-Hispanic white. Participants suggested various ways in which an ideal AP system could reduce physical and emotional burdens of diabetes. Physical burdens could be reduced by lessening user responsibilities to manage glucose for food and exercise, and wear or carry devices. Emotional burden could be reduced by mitigating negative emotional reactions to sound and frequency of alerts, while increasing feelings of normalcy. Youth and parents differed in their suggestions to reduce emotional burden. Participants suggested features that would improve glycemia, but nearly always in the context of how the feature would directly reduce their diabetes-specific burden. CONCLUSIONS: Although participants expressed interest in improving glucose levels, the pervasive desire among suggested features of an ideal AP system was to minimize the burden of diabetes. Understanding and addressing users' priorities to reduce physical and emotional burden will be necessary to enhance uptake and maintain use of future AP systems.

Associations of diabetes self-management characteristics, HbA1c, and psychosocial outcomes with depressive symptoms in a contemporary sample of adolescents with type 1 diabetes.

AIMS: We sought to examine the associations between diabetes self-management, HbA1c, and psychosocial outcomes with the frequency of depressive symptoms. METHODS: We surveyed 301 teens (50% male, 22% non-white), mean age of 15.0±1.3 years, diabetes duration of 6.5±3.7 years. Biomedical variables: daily frequency of blood glucose monitoring of 4.5±1.9, 63% insulin pump use, mean HbA1c 8.5±1.1% (69±12 mmol/mol); 15% of the sample achieved the target HbA1c of <7.5% (<58 mmol/mol). RESULTS: Nearly 1 in 5 (18%, n=54) adolescents reported significant depressive symptoms and, of those participants, slightly under half reported moderate/severe depressive symptoms. Teens with moderate/severe depressive symptoms (CES-D scores ≥24) were more likely to be female, have parents without a college education, and not utilize insulin pumps. Teens with more depressive symptoms reported higher diabetes family conflict, higher diabetes burden, and lower quality of life. In the group reporting no depressive symptoms (10%), scores on psychosocial variables and diabetes treatment variables were the most favorable. CONCLUSION: In our sample, the presence of depressive symptoms appears to relate to both diabetes treatment and quality of life. In addition, studying teens without depressive symptoms can help us learn more about protective factors that potentially buffer against depressive symptoms and that are associated with better outcomes.

Mental Health Providers' Assessment of Parents' Reactions to their Children's Elevated Depressive Symptoms.

This study assessed parental reactions to the report of elevated depressive symptoms in a sample of 29 youth with type 1 diabetes (ages 8-17 years; 48% female) who scored ≥15 on the Center for Epidemiologic Studies Depression Scale for Children (CES-DC). We also assessed parental depressive symptoms and how the presence of such symptoms was linked to parental reactions to the report of a positive screening score in their children and subsequent acceptance of a mental health referral. Mental health professionals contacted parents to discuss elevated scores and offer a mental health referral. Two coders reviewed the documentation of phone contacts made by mental health professionals and categorized parental responses to their child's elevated CES-DC score and the disposition plan. Youth and parent depressive symptoms were modestly correlated (r = 0.21, P = .01). About half (55%, 16/29) of parents were unaware of their child's depressive symptoms. Only 14% (4/29) of youth were already receiving mental health care while 28% (8/29) of parents accepted a referral. Parents with depressive symptoms were frequently unaware of their child's symptoms. Findings provide insight into parental reactions to learning of their child's depressive symptoms and highlight the need for more research on parental mood and reactions to their child's positive screen for depressive symptoms, as a potential barrier to mental health referral acceptance.

Innovative features and functionalities of an artificial pancreas system: What do youth and parents want?

AIMS: Participant-driven solutions may help youth and families better engage and maintain use of diabetes technologies. We explored innovative features and functionalities of an ideal artificial pancreas (AP) system suggested by youth with type 1 diabetes and parents. METHODS: Semi-structured interviews were conducted with 39 youth, ages 10-25 years, and 44 parents. Interviews were recorded, transcribed and coded using thematic analysis. RESULTS: Youth (72% female, 82% non-Hispanic white) were (M ± SD) ages 17.0 ± 4.7 years, with diabetes for 9.4 ± 4.9 years, and HbA1c of 68 ± 11 mmol/mol (8.4 ± 1.1%); 79% were pump-treated and 82% were continuous glucose monitor users. Of parents, 91% were mothers and 86% were non-Hispanic white, with a child 10.6 ± 4.5 years old. Youth and parents suggested a variety of innovative features and functionalities for an ideal AP system related to (1) enhancing the appeal of user interface, (2) increasing automation of new glucose management functionalities, and (3) innovative and commercial add-ons for greater convenience. Youth and parents offered many similar suggestions, including integration of ketone testing, voice activation, and location-tracking into the system. Youth seemed more driven by increasing convenience and normalcy while parents expressed more concerns with safety. CONCLUSIONS: Youth and parents expressed creative solutions for an ideal AP system to increase ease of use, enhance normalcy, and reduce burden of management. Designers of AP systems will likely benefit from incorporating the desired preferences by end users to optimize acceptance and usability by young persons with diabetes.

Text Message Intervention for Teens with Type 1 Diabetes Preserves HbA1c: Results of a Randomized Controlled Trial.

Aims: Teens with type 1 diabetes (T1D) often struggle with diabetes self-management, which may lead to suboptimal self-care and worsening hemoglobin A1c (HbA1c). Innovative strategies are needed to improve self-care and protect against glycemic decline, especially during adolescence. We aimed to assess the impact on HbA1c of two interventions, problem-solving and text messaging, in teens with T1D. Methods: In a two-site randomized controlled trial, teens (N = 301) 13-17 years of age with T1D were randomized to one of the four groups using a 2 × 2 factorial design: Teenwork (TW), Text Messaging (Text), TW+Text, or Usual Care. TW intervention included problem-solving aimed at improving T1D self-care for blood glucose (BG) monitoring and insulin bolus dosing. Text intervention involved text reminders to check BG. The primary outcome was change in HbA1c from baseline to 12 months. Results: At baseline, teens (51% female, 78% white, 59% pump-treated) were (mean ± SD) 15.0 ± 1.3 years, had diabetes duration of 6.5 ± 3.7 years, and HbA1c 8.5% ± 1.1%. There was no significant difference in HbA1c over time by study group. Responsiveness to text reminders by teens in the TEXT and TW+TEXT predicted glycemic benefit; TW did not. Conclusions: Despite no HbA1c difference by study group, greater response to text message reminders to check BG led to better glycemic control and no deterioration in HbA1c; the problem-solving intervention did not. Given the high penetration of mobile phones and the wide acceptance of text messaging among teens in general, it is encouraging that a text messaging intervention can preserve HbA1c, thus preventing the expected deterioration in glycemic control often seen in teens with T1D.

Play-Based Interventions Delivered by Child Life Specialists: Teachable Moments for Youth With Type 1 Diabetes.

INTRODUCTION: Certified child life specialists (CCLSs) are health care team members with advanced knowledge of child development. CCLSs can help establish a trajectory of engagement in diabetes self-management beginning in early childhood. METHOD: This article describes the child life interventions delivered in a pediatric diabetes clinic from 2003 to 2018. RESULTS: Over the 16 years, there were 43,549 child life interventions, grouped into six categories: medical play, developmentally appropriate recreational play, therapeutic activities, health education, coping and coaching support, and procedural support. Child life interventions occurred within the pediatric clinic in either the playroom, laboratory, or examination rooms. The CCLS team also organizes other events throughout each year, such as the Teddy Bear Clinic, to maintain child and family engagement. DISCUSSION: CCLSs may improve the experience of a child living with diabetes, setting the stage for a future that maintains engagement in self-care and encourages good health.

Baseline Psychosocial Characteristics Predict Frequency of Continuous Glucose Monitoring in Youth with Type 1 Diabetes.

BACKGROUND: Consistent use of continuous glucose monitoring (CGM) has been associated with improved glycemic control in youth with type 1 diabetes (T1D). There are many barriers to device uptake and continued use. There is a need to understand patient-specific characteristics when considering CGM. We evaluated patterns of CGM use and associations between baseline psychosocial measures and frequency of CGM use over 1 year. METHODS: Youth with T1D (n = 120), ages 8-18 years, completed questionnaires at CGM initiation and after 6 and 12 months assessing depressive symptoms, diabetes burden, and diabetes-specific and generic quality of life (QOL). RESULTS: Youth (51% male and 95% white) had mean age 12.7 ± 2.7 years, diabetes duration 6.1 ± 3.6 years, and glycated hemoglobin (HbA1c) 8.0 ± 0.8%. Over 1 year, 35% of youth used CGM 6 to 7 days per week, 45% used CGM 3-5 days per week, and 20% used CGM only 0-2 days per week. Youth who used CGM 3-7 days per week over 12 months had lower HbA1c at months 9 and 12 than youth who used CGM 0-2 days per week (9 months: 7.9 ± 0.9% vs. 8.5 ± 1.1%, P = 0.006 and 12 months: 8.0 ± 0.9% vs. 8.5 ± 1.1%, P = 0.02). Those using CGM 0-2 days per week had greater endorsement of depressive symptoms and diabetes burden and reported lower QOL at baseline compared with those using CGM 3-7 days per week. CONCLUSIONS: CGM use for 3 or more days per week over 12 months had a protective effect on HbA1c. Providers should consider addressing psychosocial parameters when initiating CGM to maximize uptake and promote continued use in youth with T1D.

Associations between major life events and adherence, glycemic control, and psychosocial characteristics in teens with type 1 diabetes.

AIMS: This cross-sectional study assessed the type of major life events occurring in a contemporary sample of teens with type 1 diabetes and the association between event frequency and demographic, diabetes management, and psychosocial characteristics. METHODS: Parents of 178 teens completed the Life Events Checklist to report major events teens had experienced in the last year: 42% experienced 0 to 1 event (n = 75), 32% experienced 2 to 3 events (n = 57), and 26% experienced 4+ events (n = 46). Teens and parents completed validated measures of treatment adherence, diabetes-specific self-efficacy, quality of life, and diabetes-specific family conflict. Parent-youth interview and chart review provided demographics and diabetes management data. RESULTS: Mean number of events/teen was 2.6 ± 2.7 (range = 0-15). The most common events were "Hospitalization of a family member" (24%), "Getting a bad report card" (20%), "Serious arguments between parents" (19%), and "Serious illness/injury in a family member" (19%). Compared with teens experiencing 0 to 1 event, teens experiencing 4+ events were less likely to have married parents (P = .01) and a parent with a college degree (P = .006). Teens with 4+ events had significantly poorer adherence (P = .002 teen, P = .02 parent), lower self-efficacy (P = .03 teen, P < .0001 parent), poorer quality of life (P < .0001 teen, P < .0001 parent), and more conflict (P = .006 teen, P = .02 parent) than teens with fewer events. In a multivariate model (R 2 = 0.21, P < .0001) controlling for demographic and diabetes management characteristics, fewer events was associated with lower A1c (P = .0009). CONCLUSIONS: Occurrence of more major life events was associated with poorer diabetes care and A1c and more negative psychosocial qualities in teens with type 1 diabetes.

Improving dietary quality in youth with type 1 diabetes: randomized clinical trial of a family-based behavioral intervention.

BACKGROUND: Diets of children with type 1 diabetes are low in fruits, vegetables, and whole grains, and high in foods of minimal nutritional value, increasing risk for future adverse health outcomes. This 18-month randomized clinical trial tested the effect of a family-based behavioral intervention integrating motivational interviewing, active learning, and applied problem-solving on the primary outcomes of dietary intake and glycemic control among youth with type 1 diabetes. METHODS: A parallel-group study with equal randomization was conducted at an outpatient, free-standing, multidisciplinary tertiary diabetes center in the United States. Eligible youth were those age 8-16 years with type 1 diabetes diagnosis ≥1 year and hemoglobin A1c (HbA1c) ≥6.5% and ≤10.0%. Participants were 136 parent-youth dyads (treatment n = 66, control n = 70). The intervention consisted of 9 in-clinic sessions delivered to the child and parent; control condition comprised equivalent assessments and number of contacts without dietary advice. Dietary intake was assessed using 3-day diet records at 6 time points across the 18-month study. Dietary outcomes included the Healthy Eating Index-2005 (HEI2005; index measuring conformance to the 2005 United States Dietary Guidelines for Americans) and Whole Plant Food Density (WPFD; number of cup or ounce equivalents per 1000 kcal of whole grains, whole fruit, vegetables, legumes, nuts, and seeds consumed). HbA1c was obtained every 3 months. Overall comparison of outcome variables between intervention and usual care groups was conducted using permutation tests. RESULTS: There was a positive intervention effect across the study duration for HEI2005 (p = .015) and WPFD (p = .004). At 18 months, HEI2005 was 7.2 greater (mean ± SE 64.6 ± 2.0 versus 57.4 ± 1.6), and WPFD was 0.5 greater (2.2 ± 0.1 versus 1.7 ± 0.1) in the intervention group versus control. There was no difference between groups in HbA1c across the study duration. CONCLUSIONS: This behavioral nutrition intervention improved dietary quality among youth with type 1 diabetes, but did not impact glycemic control. Findings indicate the potential utility of incorporating such strategies into clinical care, and suggest that improvement in diet quality can be achieved in families living with this burdensome disease. TRIAL REGISTRATION: Clinicaltrials.gov registration number: NCT00999375.

Youth-Perceived Burden of Type 1 Diabetes: Problem Areas in Diabetes Survey-Pediatric Version (PAID-Peds).

BACKGROUND: Management of type 1 diabetes in childhood can be challenging and overwhelming. Despite availability of advanced treatments and new technologies, the burden has not decreased as current approaches to intensive therapy are not without need for patient involvement. This study aimed to design and validate a measure of youth-reported burden related to type 1 diabetes management. METHOD: A multidisciplinary pediatric diabetes team designed the survey, based on a previously validated parent measure of diabetes-related burden (PAID-PR); survey revisions and pilot testing followed. The 20-item PAID-Peds assesses burden over the past month. Youth with type 1 diabetes (N = 126, ages 8-17, intensively treated with insulin pump therapy or multiple daily injections) completed the new survey, along with other surveys; parents completed companion measures. Electronic medical records and blood glucose meter download provided other salient data. RESULTS: The PAID-Peds displayed excellent internal consistency (α = .94) and acceptable test-retest reliability (intraclass correlation .66, P < .0001). The PAID-Peds correlated significantly with both youth and parent reports of diabetes-specific family conflict, negative affect around blood glucose monitoring, depressive symptomatology, trait anxiety, and quality of life. It was not correlated with demographic or clinical characteristics of the youth. CONCLUSIONS: This new measure, the PAID-Peds, of youth-reported burden related to type 1 diabetes may have clinical and research utility, particularly in the current era of emerging diabetes technologies that require ongoing patient input.

Salient characteristics of youth with type 1 diabetes initiating continuous glucose monitoring.

OBJECTIVE: Consistent continuous glucose monitoring (CGM) use is a challenge in youth with type 1 diabetes. This study aimed to investigate patient and family behavioral and clinical characteristics associated with interest in implementing CGM. RESEARCH DESIGN AND METHODS: In a cross-sectional study, we compared 120 youth interested in starting CGM (the CGM group) with a general sample of 238 youth with type 1 diabetes (the Standard group). Youth and their parents completed validated surveys assessing adherence to diabetes management, diabetes-specific family conflict, parent involvement in diabetes management, and youth quality of life. Demographic and clinical data were obtained from chart review and interview. RESULTS: Youth participants had a mean age of 13.0±2.8 years, diabetes duration of 6.3±3.4 years, and hemoglobin A1c (HbA1c) level of 8.2±1.0% (66±11 mmol/mol). Youth in the CGM group performed more frequent blood glucose monitoring, had lower HbA1c levels, and were more likely to be treated by continuous subcutaneous insulin infusion (CSII) and to be living in two-parent homes than youth in the Standard group. Compared with the Standard group, youth interested in wearing a CGM device and their parents reported greater adherence to diabetes management, less diabetes-specific family conflict, and higher youth quality of life. No differences were found between groups with respect to parent involvement in diabetes management by both youth and parent reports. CONCLUSIONS: In efforts to enhance CGM uptake, it is important to address factors such as blood glucose monitoring frequency, CSII use, adherence, and diabetes-specific family conflict when considering youth with type 1 diabetes for CGM implementation.

Youth and parent measures of self-efficacy for continuous glucose monitoring: survey psychometric properties.

BACKGROUND: This study aimed to describe the development and psychometric evaluation of novel youth and parent measures of self-efficacy related to continuous glucose monitoring (CGM) in pediatric patients with type 1 diabetes. This evaluation also assessed the predictive validity of the CGM Self-Efficacy (CGM-SE) surveys on CGM use and hemoglobin A1c (HbA1c) levels. SUBJECTS AND METHODS: Study participants included 120 youth with type 1 diabetes for ≥1 year enrolled in a 2-year randomized clinical trial comparing CGM use with and without the addition of a family-focused CGM behavioral intervention. Youth and parents completed the CGM-SE surveys at randomization after a 1-week run-in to assess CGM tolerability. Analyses of predictive validity excluded the intervention group and included 61 youth in the control group in order to assess CGM use and HbA1c outcomes 3 and 6 months after randomization. RESULTS: At study entry, youth were 12.7±2.7 years old with a diabetes duration of 6.1±3.6 years and an HbA1c level of 8.0±0.8% (64±9 mmol/mol); blood glucose monitoring frequency was 6.8±2.4 times/day, and 84% received pump therapy. CGM-SE surveys had acceptable internal consistency (Cronbach's α=0.80 for youth and 0.82 for parents). Youth reporting higher baseline CGM self-efficacy (CGM-SE score of >80) had significantly greater CGM use and lower HbA1c level after 3 and 6 months compared with youth reporting lower baseline CGM self-efficacy (CGM-SE score of ≤80). CONCLUSIONS: The CGM-SE surveys appear to have strong psychometric properties. CGM self-efficacy may offer an opportunity to assess the likelihood of CGM adherence and glycemic improvement in youth with type 1 diabetes in clinical and research settings.

Family-based psychoeducation and Care Ambassador intervention to improve glycemic control in youth with type 1 diabetes: a randomized trial.

OBJECTIVE: Youth with type 1 diabetes frequently do not achieve glycemic targets. We aimed to improve glycemic control with a Care Ambassador (CA) and family-focused psychoeducational intervention. RESEARCH DESIGN AND METHODS: In a 2-yr, randomized, clinical trial, we compared three groups: (i) standard care, (ii) monthly outreach by a CA, and (iii) monthly outreach by a CA plus a quarterly clinic-based psychoeducational intervention. The psychoeducational intervention provided realistic expectations and problem-solving strategies related to family diabetes management. Data on diabetes management and A1c were collected, and participants completed surveys assessing parental involvement in management, diabetes-specific family conflict, and youth quality of life (QOL). The primary outcome was A1c at 2 yr; secondary outcomes included maintaining parent involvement and avoiding deterioration in glycemic control. RESULTS: We studied 153 youth (56% female, median age 12.9 yr) with type 1 diabetes (mean A1c 8.4 ± 1.4%). There were no differences in A1c across treatment groups. Among youth with suboptimal baseline A1c ≥ 8%, more youth in the psychoeducation group maintained or improved their A1c and maintained or increased parent involvement than youth in the other two groups combined (77 vs. 52%, p = 0.03; 36 vs. 11%, p = 0.01, respectively) without negative impact on youth QOL or increased diabetes-specific family conflict. CONCLUSIONS: No differences in A1c were detected among the three groups at 2 yr. The psychoeducational intervention was effective in maintaining or improving A1c and parent involvement in youth with suboptimal baseline glycemic control.

Perceived benefits, barriers, and strategies of family meals among children with type 1 diabetes mellitus and their parents: focus-group findings.

Dietary management of type 1 diabetes mellitus has become much less restrictive and more flexible in recent years due to contemporary insulin regimens, which may afford families of children with type 1 diabetes mellitus greater ease in sharing family meals. Although these treatment advancements might facilitate family meals, overall demands of diabetes management can influence family's perceived or actual ability to do so. Youths with type 1 diabetes mellitus (ages 8 to 20 years) and parents participated in separate focus groups. Thirty-five youths with type 1 diabetes mellitus (mean age=15.1+/-3.6 years) and their parents participated in 21 focus groups (12 youth groups, nine parent groups). Although there was substantial variability in how often family meals occurred, both parents and youths consistently perceived family meals as valuable and enjoyable. The major barrier to family meals discussed by both youths and parents was busy schedules. Strategies for having family meals that were discussed by parents included shopping to ensure availability of the foods needed to prepare meals, planning, and cooking meals in advance, and using simplified cooking methods. These findings suggest that a family-focused approach to nutrition interventions in this population, as opposed to one targeting the child with diabetes only, can improve the chance for successful dietary change.

Brief screening tool for disordered eating in diabetes: internal consistency and external validity in a contemporary sample of pediatric patients with type 1 diabetes.

OBJECTIVE To update and validate a diabetes-specific screening tool for disordered eating (the Diabetes Eating Problem Survey [DEPS]) in contemporary youth with type 1 diabetes. RESEARCH DESIGN AND METHODS A total of 112 youth with type 1 diabetes, ages 13-19 years, completed the DEPS. Higher scores on the DEPS indicate more disordered eating behaviors. Youth and their parents also completed additional surveys to examine diabetes-specific family conflict, negative affect related to blood glucose monitoring, youth quality of life, and diabetes burden. Clinicians provided data on height, weight, A1C, and insulin dosing. The DEPS was revised into a shorter, updated measure and validated. RESULTS The revised 16-item DEPS (DEPS-R) displayed excellent internal consistency (Cronbach's alpha = 0.86). Construct validity was demonstrated by positive correlations with zBMI (P = 0.01), A1C (P = 0.001), diabetes-specific family conflict (P < 0.005), youth negative affect around blood glucose monitoring (P = 0.001), parental diabetes-specific burden (P = 0.0005), and negative correlations with frequency of blood glucose monitoring (P = 0.03) and quality of life (P < or = 0.002). External validity was confirmed against clinician report of insulin restriction. CONCLUSIONS The DEPS-R is a 16-item diabetes-specific self-report measure of disordered eating that can be completed in <10 min. It demonstrated excellent internal consistency, construct validity, and external validity in this contemporary sample of youth with type 1 diabetes. Future studies should focus on using the DEPS-R to identify high-risk populations for prevention of and early intervention for disordered eating behaviors.

The impact of modifiable family factors on glycemic control among youth with type 1 diabetes.

OBJECTIVE: To identify modifiable family factors impacting glycemic control in youth with type 1 diabetes (T1DM) beyond the anticipated physical, developmental, and behavioral issues associated with adolescence. STUDY DESIGN: In 153 youth (aged 8-16 yr) with T1DM duration of 6.3 +/- 3.5 yr and average hemoglobin A1c (HbA1c) of 8.4 +/- 1.4%, we examined modifiable family factors that might impact adherence to diabetes management and, in turn, influence glycemic control. Youth and parents completed surveys that assessed diabetes-specific knowledge, negative affect related to blood glucose monitoring (BGM), and parental-perceived burden of diabetes care. Clinician report and chart review provided data on growth, pubertal development, and diabetes management tasks. Glycemic control was measured as HbA1c. RESULTS: In bivariate analyses, higher parental diabetes-specific knowledge (p < 0.0001), less youth negative affect related to BGM (p = 0.0005), and less parental-perceived burden (p = 0.0008) were associated with lower HbA1c. In a multivariate model controlling for demographic and diabetes-specific variables, these three factors remained independent and significant predictors of HbA1c (R(2) = 0.31 and p < 0.0001). Higher parental knowledge, less youth negative affect, and less parental burden predicted lower HbA1c, while youth knowledge and parental negative affect did not. CONCLUSION: To attain optimal glycemic control, treatment programs for youth with T1DM should include ongoing efforts to reinforce parental knowledge of diabetes tasks, promote positive youth affect related to diabetes management, and acknowledge and reduce parental-perceived burden of diabetes management.

Updated and revised Diabetes Family Conflict Scale.

OBJECTIVE: The purpose of this study was to update the Diabetes Family Conflict Scale (DFCS) in the era of intensive diabetes management and provide an indication of its psychometric properties. RESEARCH DESIGN AND METHODS: The revised DFCS and measures of negative emotions around blood glucose monitoring (BGM), quality of life, and perceived parental burden from diabetes management were completed by 202 children and adolescents with type 1 diabetes and their primary caregivers. Insulin regimen, adherence, and glycemic control were also assessed. RESULTS: The revised DFCS demonstrated strong psychometric properties. There was acceptable internal consistency for child and caregiver forms of the DFCS. Factor analysis revealed two factors related to direct and indirect management tasks. Both child (r = 0.27, P < 0.01) and caregiver (r = 0.26, P < 0.01) DFCS scores were correlated with A1C values. Multivariate analysis of factors usually associated with A1C values showed an additive, independent contribution of diabetes-specific family conflict to the prediction of glycemic control: F (12,189) = 6.17, P < 0.01, R2 = 0.28. Conflict around direct management tasks (e.g., BGM) was a more important predictor of higher A1C levels than conflict around indirect management tasks (e.g., telling friends about diabetes). CONCLUSIONS: The revised and updated DFCS demonstrates strong psychometric properties and can be used as a tool for measuring the level of diabetes-specific conflict in families with children and adolescents with type 1 diabetes.

Temporal trends in the treatment of pediatric type 1 diabetes and impact on acute outcomes.

OBJECTIVE: To evaluate temporal trends in pediatric type 1 diabetes (T1DM) management and resultant effects on outcomes. STUDY DESIGN: Two pediatric T1DM cohorts were followed prospectively for 2 years and compared; Cohort 1 (N = 299) was enrolled in 1997 and Cohort 2 (N = 152) was enrolled in 2002. In both cohorts, eligible participants were identified and sequentially approached at regularly scheduled clinic visits until the target number of participants was reached. Main outcome measures were hemoglobin A1c (A1c), body mass index Z score (Z-BMI), and incidence rate (IR; per 100 patient-years) of hypoglycemia, hospitalizations, and emergency room (ER) visits. RESULTS: At baseline, Cohort 2 monitored blood glucose more frequently than Cohort 1 (> or = 4 times/day: 72% vs 39%, P < .001) and was prescribed more intensive therapy than Cohort 1 (> or = 3 injections/day or pump: 85% vs 65%, P < .001). A1c was lower in Cohort 2 than Cohort 1 at baseline (8.4% vs 8.7%, P = .03) and study's end (8.7% vs 9.0%, P = .04). The cohorts did not differ in Z-BMI (0.83 vs 0.79, P = .57) or IR of hospitalizations (11.2 vs 12.9, P = .38). Cohort 2 had lower IR of total severe hypoglycemic events (29.4 vs 55.4, P < .001) and ER visits (22.0 vs 29.3, P = .02). CONCLUSIONS: T1DM management intensified during the 5 years between cohorts and was accompanied by improved A1c and stable Z-BMI. Along with improved control, IR of severe hypoglycemia and ER visits decreased by almost 50% and 25%, respectively.

Durability of insulin pump use in pediatric patients with type 1 diabetes.

OBJECTIVE: To examine longitudinal outcomes, rate of and reasons for discontinuation, and predictors of insulin pump success in a cohort of youth initiating pump therapy. RESEARCH DESIGN AND METHODS: We followed a cohort of youth with type 1 diabetes (n = 161) starting the pump between 1998 and 2001 and recorded natural history of treatment. RESULTS: At pump start, patients (71% female) had a mean age of 14.1 +/- 3.7 years, diabetes duration of 7.1 +/- 4.0 years, daily blood glucose monitoring (BGM) frequency of 4.0 +/- 1.2, a daily insulin dose of 1.0 +/- 0.3 units/kg, and an HbA(1c) (A1C) of 8.4 +/- 1.4%. After 1 year, mean daily BGM frequency was 4.5 +/- 1.7, daily insulin dose was 0.8 +/- 0.2 units/kg, and A1C was 8.1 +/- 1.3% (all baseline versus 1-year data, P < 0.01). As of 2005, 29 patients (18%) had resumed injection therapy at a mean age of 17.0 +/- 2.9 years after a mean duration of pump use of 2.1 +/- 1.3 years. BGM frequency at baseline and at 1 year was significantly lower in the patients who resumed injection therapy (P < 0.02). In addition, patients who remained on the pump had lower A1C than those who resumed injection therapy at both 1 year (P = 0.04) and at the most recent clinic visit (P = 0.01). CONCLUSIONS: After an average of 3.8 years, >80% of pediatric patients maintained pump therapy with preservation of baseline A1C. Patients discontinuing the pump were less adherent and did not achieve equivalent glycemic benefit compared with continued users; these patients require ongoing support aimed at improving adherence and outcomes.

The impact of physiological, therapeutic and psychosocial variables on glycemic control in youth with type 1 diabetes mellitus.

OBJECTIVE: Intensive management of type 1 diabetes mellitus (DM1) in youth is challenging. We evaluated the relative impact of variables related to DM1 among groups of pre/early pubertal, midpubertal and postpubertal youths with DM1. METHODS: In this cross-sectional study of 153 youth with DM1, we ascertained Tanner stage, insulin dose and delivery modality (CSII vs MDI), daily blood glucose monitoring (BGM) frequency, and most recent hemoglobin A1c (HbA1c). We collected questionnaires from patients and their parents on diabetes-specific family conflict and family involvement in diabetes management tasks. We assessed predictors of glycemic control according to pubertal status. RESULTS: Insulin doses increased between pre/ early puberty and midpuberty (p <0.0001); daily BGM frequency (p = 0.02) and family involvement for DM management (p <0.001) were lowest in the postpubertal group. HbA1c was similar among all three puberty groups (8.4+/-1.4). Lower levels of child-reported DM-specific family conflict, more frequent BGM, and CSII use were significantly associated with lower HbA1c (R2 = 0.20, p <0.001). CONCLUSION: Although glycemic control was not significantly worse in midpubertal and post-pubertal patients, family involvement for DM management and adherence to BGM were lower in late adolescence. Interventions to optimize glycemic control may include minimizing DM-specific conflict, increasing BGM frequency, and implementing CSII use.