Validation of a self-report version of the diabetes self-management profile.

Inadequate treatment adherence impedes achievement of glycemic control targets in type 1 diabetes (T1D). Valid and reliable measurement of treatment adherence is a prerequisite to rigorous evaluation of pertinent interventions. The diabetes self-management profile (DSMP), a structured interview measure of T1D adherence, is valid and reliable but it requires trained interviewers, it is labor intensive to administer and it is burdensome for research participants. We adapted the DSMP interview to create the DSMP-self-report questionnaire (DSMP-SR) for completion by parents and youth ≥11 yr old. The DSMP-SR was obtained during a cross-sectional study of 151 youth within the age range of 8 to <18 yr with T1D [male, 50.7%; racial minorities, 23%; mean age, 13.9 yr; T1D duration, 5.5 yr; hemoglobin A1c (HbA1c), 8.7%] and a parent of each. Parents and youth ≥11 yr old completed the DSMP-SR independently. The DSMP-SR had sound internal consistency (Cronbach's α: youth, 0.82; parent, 0.80), and parent-youth agreement, (r = 0.60, p < 0.001) and significant associations with HbA1c (r = -0.35 for youth and -0.46 for parents, p < 0.001), PedsQL quality of life scale (youth: r = -0.41, p < 0.001; parent: r = -0.40, p < 0.001) and, for parents but not youth, the Revised Diabetes Family Conflict Scale (r = -0.47, p < 0.001). Higher DSMP-SR scores were associated with lower HbA1c, better quality of life, and less family conflict. The DSMP-SR has similar psychometric properties to those reported elsewhere for the DSMP, yielding a convenient measure of T1D adherence.

Youth and parent knowledge and communication about major complications of type 1 diabetes: associations with diabetes outcomes.

OBJECTIVE: Previously, we studied clinicians' and parents' perspectives about what, when, and how youth with type 1 diabetes (T1D) and parents should be taught about major complications (MC) of T1D. Results showed that this topic creates considerable anxiety among youth and parents, that there is a perceived need to tailor these experiences to each patient's circumstances, and that there is considerable variability in opinions about appropriate MC education. Prior studies did not measure youths' or parents' actual knowledge of complications, how they cope with that knowledge, or how these variables relate to T1D outcomes. The current study addresses these gaps. RESEARCH DESIGN AND METHODS: This article reports a cross-sectional study of 151 8- to 18-year-old youths with T1D and their parents in which their knowledge of MC (nephropathy, retinopathy, neuropathy, and cardiovascular disease) was ascertained by structured interview. Family communication about MC was assessed using a questionnaire validated in this study. Regression analyses explored youth age, parent and youth MC knowledge, and positive family communication about MC as predictors of T1D outcomes (hemoglobin A(1c), treatment adherence, quality of life, and family conflict about T1D). RESULTS: Parental MC knowledge was not associated with any T1D outcome; greater youth MC knowledge predicted better treatment adherence. More frequent optimistic family communication about MC was associated with more favorable status on all outcomes. CONCLUSIONS: Optimistic family communication about MC, more so than MC knowledge, predicted favorable T1D outcomes. Longitudinal studies are needed to confirm these associations and to evaluate pertinent psychoeducational interventions.

Changes in circulating satiety hormones in obese children: a randomized controlled physical activity-based intervention study.

The aims of this study are to examine in children: (i) obesity-related alterations in satiety factors such as leptin, ghrelin, and obestatin; (ii) the link between satiety factors and cardiometabolic risk factors; and (iii) the impact of a physical activity-based lifestyle intervention on the levels of these satiety factors in the obese. We studied a total of 21 adolescents (BMI percentile, 99.0 +/- 0.6 for 15 obese and 56.2 +/- 1.1 for 6 lean). The obese subjects underwent a 3-month randomized controlled physical activity-based lifestyle intervention. Leptin, soluble leptin receptor (sOB-R), ghrelin, and obestatin levels were determined as the primary outcome measures. Other markers of cardiometabolic disease such as inflammation and insulin resistance were also determined. Body composition was measured by dual-energy X-ray absorptiometry. The concentrations of ghrelin, obestatin, and sOB-R were significantly lower in the obese children compared to the lean controls, whereas that of leptin was higher (all P < 0.05). Although intervention led to a net increase in obestatin (P < 0.01) and no change in ghrelin levels, the balance between ghrelin and obestatin (ratio of ghrelin to obestatin, G/O) decreased (P < 0.02). Intervention reduced leptin and increased sOB-R (P < 0.01 for both). Significant associations between satiety factors and other cardiometabolic risk factors were also observed. Taken together, alterations in the levels of satiety factors are evident early in the clinical course of obesity, but physical activity-based lifestyle intervention either prevented their continued increase or normalized their levels. These beneficial effects appear to aid in the maintenance of body weight and reduction in cardiovascular risk.

Youth and parent education about diabetes complications: health professional survey.

OBJECTIVE: Avoiding complications is paramount in diabetes management, but little is known about how, when, and what diabetes professionals disclose to parents and youths about this topic. RESEARCH DESIGN AND METHOD: Pediatric diabetes experts (n = 534) were surveyed about their practices and attitudes regarding informing parents and youth about long-term diabetic complications. RESULTS: Professionals reported giving more information to parents, older children, and children with longer diabetes duration than younger or newly diagnosed children. Principal components analysis was completed to identify measurement factors of the attitudes about information sharing and variables affecting decision-making sections of the survey. These factor scores served as predictor variables in hierarchical multiple regression analyses. More information sharing was associated with more diabetes clinical activity, stronger sense of professional responsibility to disclose this information, less sensitivity about the emotional impact of this teaching, greater concern about exposure to inaccurate information, and less consideration of the family context (R(2) = 0.282, p < or = 0.0001). Greater propensity to share information about complications was found among health care providers who reported that they gave less consideration to such variables as the family's prior experience with diabetes in other family members or the child's duration of diabetes or the presence of psychiatric disorders in the child or family members. CONCLUSIONS: Patient characteristics and professionals' attitudes were associated with experts' willingness to inform families about long-term diabetic complications. Further research should explore how these practice variations affect coping with diabetes.

Diabetes complications in youth: qualitative analysis of parents' perspectives of family learning and knowledge.

OBJECTIVE: Youth with type 1 diabetes face long-term risks of health complications of the disease. Little is known about patients' and parents' knowledge, acquisition of information, and family communication regarding these complications. This paper reports qualitative analyses of parental focus-group discussions of this topic. RESEARCH DESIGN AND METHODS: A total of 47 participants (30 mothers, 14 fathers, and 3 others) representing 33 children between the ages of 8 and 18 years with type 1 diabetes participated in 1 of 13 focus groups. Open-ended questions focused on the type and amount of information about long-term complications presented to parents by health care professionals at different time points, as well as the way that information was presented. Questions also elicited details about parent-child communication and exposure to misconceptions about diabetes complications. RESULTS: Qualitative analysis of the transcribed focus groups revealed that participants experienced significant anxiety about diabetes complications, with a shift from concern about daily management tasks to concern about long-term complications over time. Participants desired a flexible, collaborative educational approach, especially regarding the timing and type of information, relative to the child's age and duration of diabetes. Many parents wanted more sensitive communication and emotional support from health care providers. Motivating children appeared to be a particular challenge; family burnout with regard to diabetes care over time was reported. Knowledge was gained in many ways, yet misinformation was uncommon. CONCLUSIONS: Obtaining information about long-term complications is an important process that changes over the course of the disease and with the child's developmental level. More research is needed, especially regarding youth knowledge, learning, and beliefs about diabetes complications.

Randomized, controlled trial of Behavioral Family Systems Therapy for Diabetes: maintenance and generalization of effects on parent-adolescent communication.

We report a randomized trial of a revised Behavioral Family Systems Therapy for Diabetes (BFST-D) intervention. Families of 104 adolescents with diabetes were randomized to standard care (SC) or to 6 months of an educational support group (ES) or BFST-D. Family communication and problem-solving skills were assessed at 0, 6, 12, and 18 months by independent rating of videotaped family problem-solving discussions. BFST-D improved individual communication of adolescents and mothers, but not fathers. BFST-D significantly improved quality of family interaction compared to SC (10 of 12 comparisons) and ES (6 of 12 comparisons). Changes in family communication were differentially associated with changes in glycemic control, adherence, and family conflict. BFST-D improved family communication and problem solving relative to SC and modestly relative to ES.

Randomized trial of behavioral family systems therapy for diabetes: maintenance of effects on diabetes outcomes in adolescents.

OBJECTIVE: Studies showing that family communication and conflict resolution are critical to effective management of type 1 diabetes in adolescents have stimulated interest in evaluating psychological treatments targeting these processes. Previous trials have shown that Behavioral Family Systems Therapy (BFST) improved parent-adolescent relationships but not treatment adherence or glycemic control. This study evaluates a revised intervention, BFST for Diabetes (BFST-D), modified to achieve greater impact on diabetes-related family conflict, treatment adherence, and metabolic control. RESEARCH DESIGN AND METHODS: A sample of 104 families of adolescents with inadequate control of type 1 diabetes was randomized to either remain in standard care (SC) or to augmentation of that regimen by 12 sessions of either a multifamily educational support (ES) group or 12 sessions of BFST-D over 6 months. Pertinent measures were collected at baseline and at follow-up evaluations at 6, 12, and 18 months. RESULTS: BFST-D was significantly superior to both SC and ES in effects on A1C, while effects on treatment adherence and family conflict were equivocal. Improvement in A1C appeared to be mediated by improvement in treatment adherence. A significantly higher percentage of BFST-D youth achieved moderate or greater improvement (>0.5 SD) in treatment adherence compared with the SC group at each follow-up and the ES group at 6 and 18 months. Change in treatment adherence correlated significantly with change in A1C at each follow-up. CONCLUSIONS: These results support the efficacy of BFST-D in improving A1C, but further research is needed to identify the mechanisms of this effect and to achieve cost-effective dissemination of the intervention.

Effects of behavioral family systems therapy for diabetes on adolescents' family relationships, treatment adherence, and metabolic control.

BACKGROUND: Behavioral family systems therapy (BFST) for adolescents with diabetes has improved family relationships and communication, but effects on adherence and metabolic control were weak. We evaluated a revised intervention, BFST for diabetes (BFST-D). METHODS: One hundred and four families were randomized to standard care (SC) or to 12 sessions of either an educational support group (ES) or a BFST-D over 6 months. Family relationships, adherence, glycosylated hemoglobin (HbA1c), and health care utilization were measured at baseline and after treatment. RESULTS: BFST-D significantly improved family conflict and adherence compared to SC and ES, especially among those with baseline HbA1c > or = 9.0%. BFST-D and ES significantly improved HbA1c compared to SC among those with baseline HbA1c > or = 9.0%. CONCLUSIONS: The revised intervention (BFST-D) improved family conflict and treatment adherence significantly, while both ES and BFST-D reduced HbA1c significantly, particularly among adolescents with poor metabolic control. Clinical translation of BFST-D requires further study.

Self-care autonomy and outcomes of intensive therapy or usual care in youth with type 1 diabetes.

OBJECTIVE: This article evaluated whether deviation from developmentally appropriate self-care autonomy moderated the effects of intensive therapy (IT) or usual care (UC) on glycosylated hemoglobin (HbA(1C)) in 142 youths with diabetes. METHODS: Youths received an autonomy/maturity ratio (AMR) score at baseline that was a ratio of standardized scores on measures of self-care autonomy to standardized scores on measures of psychological maturity and were categorized by tertile split into low, moderate, and high AMR. RESULTS: Higher baseline AMR was associated with higher baseline HbA(1C) for IT and UC. Baseline AMR scores predicted glycemic outcomes from UC; the high AMR tertile showed deteriorating glycemic control over time, whereas the low AMR tertile maintained better glycemic control. All three AMR groups derived equal glycemic benefit from IT. CONCLUSION: Children with inordinate diabetes self-care autonomy may fare poorly in UC but these same children may realize less glycemic deterioration during IT.

The psychologic context of pediatric diabetes.

During the past few decades, there has been an explosion of behavioral science research on family management of pediatric diabetes. This article distills the major conclusions from that literature, emphasizing how primary care providers can apply these findings in clinical practice.

A randomized controlled trial of insulin pump therapy in young children with type 1 diabetes.

OBJECTIVE: This study assesses the effects of insulin pump therapy on diabetes control and family life in children 1-6 years old with type 1 diabetes. RESEARCH DESIGN AND METHODS: Twenty-six children with type 1 diabetes for >/=6 months were randomly assigned to current therapy (two or three shots per day using NPH insulin and rapid-acting analog) or continuous subcutaneous insulin infusion (CSII) for 6 months. After 6 months, current therapy subjects were offered CSII. Changes in HbA(1c), mean blood glucose (MBG), hypoglycemia frequency, diabetes-related quality of life (QOL), and parental adjustment were recorded. RESULTS: Eleven subjects from each group completed the trial (age 46.3 +/- 3.2 months [means +/- SE]). At baseline, there were no differences between groups in HbA(1c), MBG, age, sex, diabetes duration, or parental QOL. Mean HbA(1c), MBG, and parental QOL were similar between groups at 6 months. Mean HbA(1c) and MBG did not change from baseline to 6 months in either group. The frequency of severe hypoglycemia, ketoacidosis, or hospitalization was similar between groups at any time period. Subjects on CSII had more fasting and predinner mild/moderate hypoglycemia at 1 and 6 months. Diabetes-related QOL improved in CSII fathers from baseline to 6 months. Psychological distress increased in current therapy mothers from baseline to 6 months. All subjects continued CSII after study completion. CONCLUSIONS: CSII is safe and well tolerated in young children with diabetes and may have positive effects on QOL. CSII did not improve diabetes control when compared with injections, despite more mild/moderate hypoglycemia. The benefits and realistic expectations of CSII should be thoroughly examined before starting this therapy in very young children.

Five points and a lament about Range and Cotton's "Reports of assent and permission in research with children: illustrations and suggestions.

This comment responds to an article by Range and Cotton (1995) on reporting of parental permission and child assent procedures in published articles for 4 psychology journals. Issue is taken with the assumptions, methodology, interpretations, and implications of listing researchers in the Range and Cotton article. There is no evidence researchers failed in their ethical obligations or that children were put at risk. Reporting permission/assent in publications is not an ethical requirement. Listing researchers as "failing" to do something not part of an ethical code is lamentable. Too many unfortunate implications and problems can be derived from Range and Cotton's analysis and conclusions.