Diabetes Family Responsibility Questionnaire Research Articles

Lower Independent Self-Care Readiness Persists over Time in Teens with Type 1 Diabetes and Executive Function Challenges.

Management of type 1 diabetes is complex and benefits from adequate executive function (EF) (planning, organization, problem-solving). Teens with diabetes and executive dysfunction may have challenges with acquisition of self-care skills. Over 18 months, parents of teens with type 1 diabetes aged 13-17 completed the Diabetes Family Responsibility Questionnaire (DFRQ) and Readiness for Independent Self-Care Questionnaire (RISQ) every 6 months. Parents assessed teen EF, completing the Behavior Rating Inventory of Executive Function (BRIEF). T-score ≥60 defined EF challenges. EF, demographic, and diabetes treatment variables predicted RISQ score over time using longitudinal mixed modeling with false discovery rate adjustment. There were 169 teen participants (54% male) aged 15.9±1.3 years, diabetes duration 8.4±3.7 years, and A1c 8.6±1.2%. About a third (31.4%) of teens had parent-reported BRIEF Global Executive Composite (GEC) scores ≥60. After adjusting for age, gender, and DFRQ, those with GEC <60 had RISQ score 4.1 points higher than those with GEC ≥60, p=0.016. Behavioral regulation index (BRI; adjusted for age, CGM use, DFRQ, and A1c) did not predict RISQ while metacognition index (MI; adjusted for age, gender, and DFRQ) did; those with MI <60 had RISQ score 5.3 points higher than those with MI ≥60, p<0.001. In all models, older teen age (p<0.05) and less parental involvement (p<0.001) predicted higher RISQ score. EF skills, especially metacognition, appear important for acquisition of self-care behaviors in teens with type 1 diabetes. Evaluating EF during adolescence may identify teens needing extra support during the transition process.

A Systematic Review of Instruments Measuring the Division of Care Responsibilities between Children with Type 1 Diabetes and their Parents.

The division of care responsibilities between parents and children with type 1 diabetes, and an optimal transfer of responsibilities from parent to child over time are assumed to be key for optimal diabetes outcomes during childhood and adolescence. However, an overview of instruments assessing this division as well as their psychometric qualities is currently lacking. The study aims to 1) identify all existing instruments, 2) evaluate their psychometric properties, and 3) provide an overview of scoring methods. Pubmed and PsycINFO were searched using a priori-defined search string. Peerreviewed studies in English using an instrument assessing the division of diabetes care responsibilities between children (6-18 years) and parents were included. In total, 84 of 725 articles qualified, covering 62 unique samples. Thirteen questionnaires were identified. The Diabetes Family Responsibility Questionnaire (DFRQ) was most frequently used across studies. Instructions, content and number of tasks, response options, and scoring methods varied across questionnaires. Recent studies often adapted questionnaires, contributing to the heterogeneity across measures. Overall, reporting and quality of psychometric properties was suboptimal. The division of diabetes care responsibilities can be operationalized with various instruments, each having its strengths and weaknesses but all with limited psychometric support. To measure the division of diabetes care responsibilities more adequately, an updated version of the popular DFRQ or a new scale needs to be developed and evaluated.

Updated Psychosocial Surveys With Continuous Glucose Monitoring Items for Youth With Type 1 Diabetes and Their Caregivers.

We added items relevant to continuous glucose monitoring (CGM) to the Diabetes Family Conflict Scale (DFC), Diabetes Family Responsibility Questionnaire (DFR), and Blood Glucose Monitoring Communication Questionnaire (GMC) and evaluated the psychometric properties of the updated surveys. Youth with type 1 diabetes who recently started CGM and their parents completed the updated surveys and additional psychosocial surveys. Medical data were collected from self-reports and review of the medical record. Youth (N = 114, 49% adolescent girls) were aged 13.3 ± 2.7 years and had mean glycated hemoglobin (HbA1c) 7.9 ± 0.9%; 87% of them used pump therapy. The updated surveys demonstrated high internal consistency (DFC youth: α = .91, parent: α = .81; DFR youth: α = .88, parent: α = .93; and GMC youth: α = .88, parent: α = .86). Higher youth and parent DFC scores (more diabetes-specific family conflict) and GMC scores (more negative affect related to glucose monitoring) were associated with more youth and parent depressive symptoms (r = 0.28-0.60, P ≤ .003), more diabetes burden (r = 0.31-0.71, P ≤ .0009), more state anxiety (r = 0.24 to r = 0.46, P ≤ .01), and lower youth quality of life (r = -0.29 to -0.50, P ≤ .002). Higher youth and parent DFR scores (more parent involvement in diabetes management) were associated with younger youth age (youth: r = -0.76, P < .0001; parent: r = -0.81, P < .0001) and more frequent blood glucose monitoring (youth: r = 0.27, P = .003; parent: r = 0.35, P = .0002). The updated DFC, DFR, and GMC surveys maintain good psychometric properties. The addition of CGM items expands the relevance of these surveys for youth with type 1 diabetes who are using CGM and other diabetes technologies.

Perceptions of diabetes management among adolescents with type 1 diabetes and their caregivers: development and validation of the Japanese version of the diabetes family responsibility questionnaire.

The shift in diabetes management responsibility is critical for adolescents with type 1 diabetes (T1D). Currently, in Japan, there is insufficient progress in the development of scales for evaluating diabetes management responsibility. We developed the Japanese version of the Diabetes Family Responsibility Questionnaire (DFRQ), a scale to evaluate diabetes management responsibility, and verified its reliability and validity. We recruited 12-18-year-old adolescents with T1D and their caregivers. The DFRQ questionnaires (DFRQ-A for adolescents and DFRQ-C for caregivers) were distributed. The responses of 31 pairs were analyzed (adolescents: 9 males, 22 females; mean age: 14.8 ± 1.5years). The median total DFRQ scores of adolescents (30.0) and caregivers (32.0) were not significantly different (p = 0.269). The internal consistencies (Cronbach's α) were 0.784 and 0.687 for DFRQ-A and DFRQ-C, respectively. DFRQ-A scores and adolescent age demonstrated a weak statistically significant negative correlation (r = - 0.397, p = 0.027), whereas DFRQ-C scores and adolescent age demonstrated a weak negative correlation not statistically significant (r = - 0.311, p = 0.089). Both scores were significantly negatively correlated with self-efficacy for diabetes self-management scores (r = - 0.390, p = 0.030; r = - 0.478, p = 0.006, respectively). Furthermore, a significantly moderate positive correlation was found between these scores (r = 0.624, p < 0.001). We confirmed the reliability and validity of the Japanese version of DFRQ. DFRQ is expected to be used as a dyadic scale to evaluate the status of diabetes management responsibility and its transition during adolescence in Japan.

1004-P: Executive Dysfunction Predicts Lower Self-Care Readiness in Teens with Type 1 Diabetes

Aim: Management of type 1 diabetes (T1D) is a complex multi-step process in which executive function (EF) skills (planning, organization, problem solving) are critical for optimal control. In teens with T1D, EF may be important in transitioning from parent-supervised care to self-care. Methods: In an 18-month study, teens aged 13-17 years with T1D and parents completed the Diabetes Family Responsibility Questionnaire (DFR) and Readiness for Independent Self-Care Questionnaire (RISQ) every 6 months. Teen EF was assessed by parent proxy-report using Behavior Rating Inventory of Executive Function (BRIEF) . T-score ≥60 defined risk of executive dysfunction for the Global EF Composite (GEC) , Behavioral Regulation Index (BRI) and Metacognition Index (MI) . EF, demographic, and T1D treatment variables were used to predict change in RISQ over time using longitudinal mixed models with false discovery rate adjustment. Results: 169 teens (54% male) participated with baseline age 15.9±1.3 years, T1D duration 8.4±3.7 years, HbA1c 8.6±1.2%, 74.6% insulin pump use, and 21.3% continuous glucose monitor (CGM) use. 31.4% of teens had a parent-reported GEC score ≥60. After adjusting for age, gender, and parent-reported DFR (pDFR) , those with GEC ≥60 had parent-reported RISQ (pRISQ) 4.1 points lower than those with GEC &amp;lt;60, p=0.016. BRI (adjusted for age, CGM use, pDFR, and HbA1c) did not predict change in pRISQ while MI (adjusted for age, gender, and pDFR) did; those with MI ≥60 had pRISQ 5.3 points lower than those with MI &amp;lt;60, p&amp;lt;0.001. In models using teen-reported DFR and RISQ (tRISQ) , GEC and MI similarly predicted lower tRISQ. In all models, lower age (p&amp;lt;0.05) and greater parent involvement (p&amp;lt;0.001) also predicted lower RISQ. Conclusion: EF, especially metacognition, appears important for acquisition of self-care behaviors for teens with T1D. Evaluating EF during adolescence may identify teens with executive dysfunction who may need extra support during the transition process. Disclosure R.J.Vitale: None. L.J.Tinsley: None. L.K.Volkening: None. L.M.Laffel: Advisory Panel; Medtronic, Roche Diabetes Care, Consultant; Boehringer Ingelheim International GmbH, Dexcom, Inc., Dompé, Insulet Corporation, Janssen Pharmaceuticals, Inc., Lilly Diabetes, Novo Nordisk, Provention Bio, Inc. Funding NIH T32DK007529NIH P30DK036836NIH R01DK095273JDRF 2-SRA-2014-253-M-B

596-P: Diabetes Responsibility Moderates Relationship between Fear of Hypoglycemia and A1C in Adolescents with Type 1 Diabetes

Fear of hypoglycemia (FOH) is not consistently correlated with A1C in youth with T1D, but few studies have taken other psychosocial variables into account. This study examined T1D responsibility as a moderator of the relationship between FOH and A1C. N=1youth ages 10-18 yrs (45.5% male; age=14.7±1.9 yrs; A1C=9.9±1.6%; T1D duration=6.5+3.4 yrs) completed the Maintain High Blood Glucose subscale of the Children’s Hypoglycemia Fear Survey (assesses behavioral manifestations of FOH) and Diabetes Family Responsibility Questionnaire (assesses distribution of T1D responsibility between child and caregiver) . Higher scores indicate greater FOH and caregiver responsibility, respectively. The main effect of T1D responsibility on A1C was not significant (p&amp;gt;0.05) , whereas the main effect of Maintain High Blood Glucose was (p=0.03) . Responsibility moderated the relationship between Maintain High Blood Glucose and A1C; child’s FOH had less of an effect on A1C if the caregiver had higher responsibility (B=-0.41, p=0.04; R2 =0.038, p&amp;lt;0.04) . Children who maintain their blood glucoses higher than recommended due to high FOH should have more parent involvement in their T1D care to minimize the deleterious impact of their fears on A1C. Future research should examine the Maintain High Blood Glucose subscale and other psychosocial moderators specifically in relation to glycemic outcomes. Disclosure E.R.Shaffer: None. H.K.O'donnell: None. G.T.Alonso: None. S.Majidi: None. J.K.Snell-bergeon: Stock/Shareholder; GlaxoSmithKline plc. R.Wadwa: Advisory Panel; Dompé, Consultant; Beta Bionics, Inc., Other Relationship; Tandem Diabetes Care, Inc., Research Support; Dexcom, Inc., Eli Lilly and Company, Tandem Diabetes Care, Inc. K.A.Driscoll: None. Funding National Institute of Diabetes and Digestive and Kidney Diseases (DP3DK113363)

Acquisition of Self-Care Responsibility in Youth With Type 1 Diabetes: Opportunities for Improving Tailored Diabetes Education and Support Programs.

There is gradual acquisition of type 1 diabetes self-care responsibility across childhood as youth mature and gain more independence from their family. Understanding the timing of diabetes self-care by youth can guide the tailoring of diabetes education and support programs. To investigate parent-perceived responsibility for diabetes self-care tasks across childhood. Parents/guardians of youth (ages 5-18 years) with type 1 diabetes reported parent involvement in diabetes management using the Diabetes Family Responsibility Questionnaire. Survey items were divided items into five domains: nutrition, monitoring, insulin dosing, communication, and health surveillance. Age-groups for analyses were 5-10 years (elementary school), 11-14 years (early adolescence), and 15-18 years (late adolescence). Demographic, diabetes management, and A1C data were collected at the time of survey completion. Youth (n = 148, 50% male) were a mean age of 12.9 ± 3.3 years, with a mean type 1 diabetes duration of 6.2 ± 3.6 years; 66% used insulin pump therapy, and the mean A1C was 8.4 ± 1.3%. Of the parents (84% mothers, 91% White), 83% were married, and 52% were college educated. Per parent report, less parental involvement was associated with older youth age (P <0.001). Across all age-groups, more overall parental involvement was related to lower A1C (P = 0.02). Youth self-care in the nutrition domain began in elementary school, whereas self-care in monitoring and insulin dosing began in early adolescence, and self-care with regard to communication started in late adolescence. Responsibility for health surveillance remained mainly under parent care throughout childhood and adolescence. Providing education and support for youth during their acquisition of self-care tasks, especially those relating to nutrition, monitoring, and insulin dosing, may help to prevent glycemic deterioration later in childhood and adolescence.

1375-P: Acquisition of Self-Care in Youth with Type 1 Diabetes (T1D) Varies by Age and Task

Aim: In childhood, there is gradual transition of T1D tasks from parents to youth. To assess acquisition of self-care by age, we examined parent report of responsibility across task domains in youth ages 5-18 years. Methods: Parents of youth with T1D completed the Diabetes Family Responsibility Questionnaire using 3 response options (mainly parent, shared, mainly youth) across 5 T1D domains: Nutrition, Monitoring, Insulin, Communication, and Health Surveillance. Analyses included 3 age groups: 5-10 (Elementary School [ES]), 11-14 (Early Adolescence [EA]), and 15-18 (Late Adolescence [LA]). Results: Youth (N=148, 50% male) were 12.9±3.2 [X±SD] years, with T1D duration 6.2±3.6 years; 60% pump treated, BG checks 5.6±2.9 X/day, A1c 8.4±1.3%. Parents were 84% mothers, 92% white, 83% married, and 63% college educated. Parent report of youth self-care varied by age and task (Figure). Youth self-care increased as age and T1D duration increased (p&amp;lt;.001). Self-care in Nutrition began in ES, followed by Monitoring and Insulin in EA, and Communication in LA. Health Surveillance (e.g., sick day care) remained mainly under parent care for majority in ES, EA, and LA. In all youth, more parent involvement was related to lower A1c (p&amp;lt;.03). Conclusion: Recognizing and supporting youth during acquisition of self-care, especially for Nutrition, BG Monitoring, and Insulin, may help to prevent glycemic deterioration later in childhood/adolescence. Disclosure R.O. La Banca: None. L.K. Volkening: None. L.M. Laffel: Advisory Panel; Self; Lilly Diabetes, Novo Nordisk A/S, Roche Diabetes Care, Sanofi. Consultant; Self; AstraZeneca, Boehringer Ingelheim International GmbH, Dexcom, Inc., Janssen Pharmaceuticals, Inc., UpToDate. Funding National Institutes of Health (P30DK036836)

Youth With Type 1 Diabetes Taking Responsibility for Self-Management: The Importance of Executive Functioning in Achieving Glycemic Control: Results From the Longitudinal DINO Study.

Successful self-management of type 1 diabetes requires cognitive skills such as executive functioning (EF). In the transition to adolescence, youth take over responsibility for diabetes management. We set out to test: 1) the association between EF and glycemic control over time and 2) whether this association was moderated by: a) youth, shared, or parent responsibility for diabetes management and b) youth's age. Within the Diabetes IN DevelOpment study (DINO), parents of youth with type 1 diabetes (8-15 years at baseline; N = 174) completed a yearly assessment over 4 years. Glycemic control (HbA1c) was derived from hospital charts. Youth's EF was measured using the Behavior Rating Inventory of Executive Functioning (BRIEF)-parent report. The Diabetes Family Responsibility Questionnaire (DFRQ)-parent report was used to assess diabetes responsibility (youth, shared, and parent). Linear generalized estimating equations were used to analyze data including youth's sex, age, and age of diabetes onset as covariates. Relatively more EF problems are significantly associated with higher HbA1c over time (β = 0.190; P = 0.002). More EF problems in combination with less youth responsibility (β = 0.501; P = 0.048) or more parental responsibility (β = -0.767; P = 0.006) are significantly associated with better glycemic control over time. Only age significantly moderates the relationship among EF problems, shared responsibility, and glycemic control (β = -0.024; P = 0.019). Poorer EF is associated with worse glycemic control over time, and this association is moderated by responsibility for diabetes management tasks. This points to the importance of EF when youth take over responsibility for diabetes management in order to achieve glycemic control.

Shared Responsibility for Type 1 Diabetes Care Is Associated With Glycemic Variability and Risk of Glycemic Excursions in Youth.

We examined how parent and youth responsibility for type 1 diabetes (T1D) care is related to adherence and glycemic outcomes, namely, glycemic variability and risk of glycemic excursions. One hundred thirty-five parent-youth dyads (10-16 years old; diagnosed with T1D for at least 6 months) participated in this study. Percent responsibility of T1D care attributed to the youth, parent, or shared was measured using the Diabetes Family Responsibility Questionnaire. We collected youth's hemoglobin A1c (HbA1c) and glucometer downloads to examine relationships between responsibility and HbA1c, frequency of blood glucose monitoring (self-monitoring blood glucose, SMBG), risk of glycemic excursions, and actual glycemic variability using bivariate correlations and path analysis. Participants reported shared responsibility for almost half of T1D self-care tasks. Bivariate correlations showed shared responsibility was associated with less variability, whereas parent responsibility was associated with greater glycemic variability and risk for glycemic excursions. Youth responsibility was associated with lower frequency of SMBG. The path analyses confirmed our correlational findings (ps<.05) and better characterized interactions with age for youth-reported responsibility. Our results support the hypothesis that shared T1D responsibility is associated with better diabetes outcomes in youth.

Differences in parental involvement in the care of children and adolescents with type 1 diabetes mellitus on multiple daily insulin injections versus continuous subcutaneous insulin infusion.

Assessing the degree of involvement of caregivers for children with type 1 diabetes mellitus (T1DM) in their diabetes care, differences in the degree of involvement based on the method of insulin administration (multiple daily injections: MDI/continuous subcutaneous insulin infusion: CSII), and its effect on glycemic control. This was a cross-sectional study with T1DM patients, ages 6-13 years using a six question survey derived from the Diabetes Family Responsibility Questionnaire (DFRQ). All caregivers (n=140) and participants between ages 11 and 13 (n=60) completed the survey. Significant differences between MDI and CSII caregiver responses were found for responsibility for giving insulin boluses, as well as for rotation of infusion/injection sites (p<0.001 and p=0.03, respectively). A sub-analysis of caregiver responses for caregiver versus child responsibility for giving infusion boluses (excluding shared responsibility) showed that 36% of children in the CSII group had primary responsibility for giving insulin boluses, compared to 17% in the MDI group (p<0.001). The median agreement for all questions combined between participants and caregivers for ages 11-13 (n=60 pairs) was "poor" (κ=0.18). No significant effect of parental involvement on last 2-year average HbA1C was found for CSII or MDI groups (p>0.20). Caregiver reported diabetes care responsibility (mostly parent, mostly child, shared between parent and child) varies for certain aspects of diabetes related care for children ages 6-13, depending upon the mode of insulin administration. Based on the reported degree of parental collaboration, HbA1C did not differ significantly. However, long-term effects are yet to be determined in longitudinal studies.

Structured, intensive education maximising engagement, motivation and long-term change for children and young people with diabetes: a cluster randomised controlled trial with integral process and economic evaluation – the CASCADE study

Structured, intensive education maximising engagement, motivation and long-term change for children and young people with diabetes: a cluster randomised controlled trial with integral process and economic evaluation – the CASCADE study

The reliability and validity of the Diabetes Family Responsibility Questionnaire, in a sample of Swedish children with Type 1 diabetes and their parents

Study background: The Diabetes Family Responsibility Questionnaire (DFRQ) is a self-report questionnaire developed to measure family sharing of responsibility for diabetes treatment tasks. The Swedish version of the DFRQ is currently being used in an ongoing family intervention study at The Queen Silvia Children´s hospital. Testing the reliability and validity of the instrument in a Swedish population is an important work in raising the quality of its contribution to research. Aim: The overall aim of the study was to assess the psychometric properties of the DFRQ in a Swedish sample of children, mothers and fathers. A second aim was to bring fathers into the sample and to evaluate whether there are any differences in how mothers and fathers perceive family sharing of responsibility for diabetes treatment tasks. Methods: 159 inhouse patients, 8-18 years, from two diabetes centres, and their parents, participated in the study. The DFRQ was administered by postal mail to the families. Internal consistency of the scale was measured with Cronbach’s alpha and its concurrent validity was evaluated using bivariate correlations. Independent t -tests were performed to test for differences between mother- and father reports. The study was reviewed and approved by the Regional Ethical Review Board. Results: The Diabetes Family Responsibility Questionnaire exceeded the criteria for satisfactory internal consistency for the child-, mother- and father reports with a-values ranging from .87 to .90. Furthermore, children and parents reported that the child assumed greater responsibility for diabetes management tasks with increasing age, thus confirming concurrent validity of the instrument. Conclusion: In summary the study concludes that the Swedish version of the DFRQ can be utilized as a valuable tool both in a research setting and in clinical practice.

Family responsibility dynamics for young adults in transition to adult health care

Aim: To explore family responsibility dynamics, metabolic control, clinic attendance, and emergency admissions when young adults (YA) with type 1 diabetes transition to an adult hospital. Method: A longitudinal mixed method design with two study groups (parents, n = 28; YA intervention group, n = 23) and a YA comparison group (n = 20). Sample recruited from an outpatient diabetes centre. Demographic, clinic attendance, emergency admissions, biodata, and the Diabetes Family Responsibility Questionnaire (DFRQ) were completed on entry and sixmonths later as part of an 18-month trial of a diabetes transition coordinator (DTC). The selfreport DFRQ were analyzed using derived parent-child dyadic variables to explore differences at baseline and end of study using Wilcoxon Signed Rank Test. The relationship between metabolic control and the DFRQ patterns was explored using Spearman’s rho. Results: On completion of the study, the change in HBA1Cfor both adolescent groups was not significant but was less than ideal for 25% of adolescents in the study. The YA intervention group had significantly fewer missed appointments between them compared to the comparison group. The DFRQ indicated that the derived parent-child dyadic variable of task-discordance increased during the study. Conclusion: The clinically relevant diabetes-task dissonance between parents and young adults offers a challenge and a diagnostic opportunity for diabetes educators.

Who Forgot? The Challenges of Family Responsibility for Adherence in Vulnerable Pediatric Populations

* Abbreviations: ART — : antiretroviral therapy Buchanan et al1 have provided important data and a thoughtful report on barriers to medication adherence in HIV-infected children and youth. These investigators wisely assessed both child and caregiver perceptions about barriers to adherence with a questionnaire containing 19 different barriers to medication adherence asking each respondent how often each barrier occurred in the last month. They did this to assess the congruence between child and caregiver perception of barriers to adherence to antiretroviral therapy (ART). They also used an adaptation1 of the Diabetes Family Responsibility Questionnaire ,3 a self-report measure I developed with Wendy Auslander at Washington University in 1990. Identical versions of this questionnaire ask the parent and child if the primary responsibility for a series of tasks involved in adhering to the prescribed treatment plan (originally type 1 diabetes) is carried out by the parent or the child, or if the responsibility is shared between the parent and child. We originally developed this questionnaire about family–responsibility-sharing to understand more about how the transition of responsibility for adherence tasks between parents and children relates to health outcomes. … Address correspondence to Barbara J. Anderson, PhD, Department of Pediatrics, Baylor College of Medicine, 1102 Bates St, Suite #730, Houston, TX 77030. E-mail: bja{at}bcm.edu

Responsibility Sharing between Adolescents with Type 1 Diabetes and Their Caregivers: Importance of Adolescent Perceptions on Diabetes Management and Control

To analyze associations between factor scores for caregiver responsibility for direct and indirect diabetes management tasks with glycemic control and blood glucose monitoring (BGM) frequency. Two hundred and sixty one adolescents with type 1 diabetes and their caregivers completed the Diabetes Family Responsibility Questionnaire (DFRQ). Data on diabetes management (e.g., BGM frequency) and glycemic control (e.g., A1c values) were obtained. Confirmatory factor analysis of the DFRQ revealed two factors-direct and indirect management tasks. Multivariate analyses demonstrated that adolescent perception of greater responsibility sharing with caregivers on direct management tasks was significantly associated with higher BGM frequency. Adolescents who perceive greater caregiver responsibility, particularly around direct management tasks, engage in better diabetes management. Implications of these findings include designing interventions that encourage and sustain caregiver responsibility through adolescence and make explicit the contribution of caregivers.

Dyadic measures of the parent–child relationship during the transition to adolescence and glycemic control in children with type 1 diabetes.

To identify aspects of family behavior associated with glycemic control in youth with type 1 diabetes mellitus during the transition to adolescence, the authors studied 121 9- to 14-year-olds (M = 12.1 yrs) and their parents, who completed the Diabetes Family Conflict Scale (DFCS) and the Diabetes Family Responsibility Questionnaire (DFRQ). From the DFRQ, the authors derived 2 dyadic variables, frequency of agreement (exact parent and child concurrence about who was responsible for a task) and frequency of discordance (opposite parent and child reports about responsibility). The authors divided the cohort into Younger (n = 57, M = 10.6 yrs) and Older (n = 64, M = 13.5 yrs) groups. Family conflict was significantly related to glycemic control in the entire cohort and in both the Younger and Older groups. However, only in the Younger group was Agreement related to glycemic control, with higher Agreement associated with better glycemic control. Findings suggest that Agreement about sharing of diabetes responsibilities may be an important target for family-based interventions aiming to optimize glycemic control in preteen youth.

Are family factors universally related to metabolic outcomes in adolescents with Type 1 diabetes?

To assess the importance of family factors in determining metabolic outcomes in adolescents with Type 1 diabetes in 19 countries. Adolescents with Type 1 diabetes aged 11-18 years, from 21 paediatric diabetes care centres, in 19 countries, and their parents were invited to participate. Questionnaires were administered recording demographic data, details of insulin regimens, severe hypoglycaemic events and number of episodes of diabetic ketoacidosis. Adolescents completed the parental involvement scale from the Diabetes Quality of Life for Youth--Short Form (DQOLY-SF) and the Diabetes Family Responsibility Questionnaire (DFRQ). Parents completed the DFRQ and a Parental Burden of Diabetes score. Glycated haemoglobin (HbA(1c)) was analysed centrally on capillary blood. A total of 2062 adolescents completed a questionnaire, with 2036 providing a blood sample; 1994 parents also completed a questionnaire. Family demographic factors that were associated with metabolic outcomes included: parents living together (t = 4.1; P < 0.001), paternal employment status (F = 7.2; d.f. = 3; P < 0.001), parents perceived to be over-involved in diabetes care (r = 0.11; P < 0.001) and adolescent-parent disagreement on responsibility for diabetes care practices (F = 8.46; d.f. = 2; P < 0.001). Although these factors differed between centres, they did not account for centre differences in metabolic outcomes, but were stronger predictors of metabolic control than age, gender or insulin treatment regimen. Family factors, particularly dynamic and communication factors such as parental over-involvement and adolescent-parent concordance on responsibility for diabetes care appear be important determinants of metabolic outcomes in adolescents with diabetes. However, family dynamic factors do not account for the substantial differences in metabolic outcomes between centres.

Approaches to integrating paediatric diabetes care and structured education: experiences from the Families, Adolescents, and Children's Teamwork Study (FACTS)

The Families, Adolescents and Children's Teamwork Study (FACTS) is a family-centred structured education programme for children and adolescents with Type 1 diabetes. It aims to integrate group-based diabetes education into routine care, enhance parental responsibility for self management and improve glycaemic control. A randomized wait-list control group study allocated participants to either the immediate (four educational sessions during year 1) or delayed intervention (four educational sessions during year 2). In both groups, glycated haemoglobin (HbA1c) was measured 3-monthly and participants completed the Paediatric Quality of Life Inventory (PedsQL), Problem Areas in Diabetes Scale (PAID) and Diabetes Family Responsibility Questionnaire (DFRQ) before and after the intervention. Intention-to-treat analysis showed no significant difference in HbA1c or parental responsibility between participants randomized to the immediate or delayed programme. However, during 12 months' follow-up, families who attended > or = 2 sessions reported increased parental involvement (P = 0.01), and in children/adolescents who attended > or = 2 sessions HbA1c fell by 0.29% compared with an increase of 0.11% in non-attenders (P = 0.04). This family-centred education programme has been integrated into paediatric diabetes care with potential benefits on parental involvement and glycaemic control, but further study is warranted before routine application into clinical care.

Self- and Dependent-Care Responsibility of Adolescents with IDDM and their Parents

The purposes of this study were to describe perceptions of the division of diabetes self- and dependent-care responsibility among young adolescents and their parents in two-parent families and to examine the relationship of these perceptions to metabolic control of diabetes. Respondents were 31 adolescents, aged 12 to 15 years and their parents from two-parent families. Illness-related self-care responsibility of adolescents (adolescent self-care) and parent dependent care were assessed with a modification of the Diabetes Family Responsibility Questionnaire. Metabolic control was assessed by glycosylated hemoglobin (HbA1c) at two intervals 2 months apart. There was significant difference between pairs of respondents on perceptions of diabetes responsibility. Individual perspectives were unique enough to retain individual scores rather than combining scores. Adolescents' perceptions that they had less responsibility (r = −43, p = .02) and that their mothers had more responsibility (r = .41, p = .03) were associated with prior poorer metabolic control but not current metabolic control.