SBSB Research: Family Management of Type 1 Diabetes in Youth

Successful management of type 1 diabetes in youth is heavily dependent upon family adaptation to the affective, behavioral, and cognitive demands imposed by the disease. Poor adaptation to diabetes during adolescence is likely to persist into early adulthood, accelerating the risks of both long-term medical complications and psychiatric sequelae. Research suggests that routine implementation of behavioral interventions into standard care may enhance adherence, quality of life, and glycemic control. This program of research examines determinants of health outcomes and tests the efficacy of clinic-integrated behavioral intervention for families of youth with type 1 diabetes.

Family Management of Diabetes Multisite Trial

This study employed a randomized experimental design in which youth-parent dyads attending one of four clinical sites were stratified by degree of glycemic control and randomized to receive either standard care or a clinic-integrated behavioral intervention. The intervention was based on individual and family-system theoretical perspectives, including social cognitive theory, self-regulation, and authoritative parenting. It was designed to provide experiential training for families in the use of a problem-solving approach to promote improved parent-child teamwork and more effective problem-solving skills for diabetes management. The intervention was designed to be applicable to the broad population of youth with diabetes and their families, flexibly implemented and tailored to the varying needs of families, and delivered at a low intensity over time to meet the changing needs and roles of families during the period in which responsibility for diabetes management typically undergoes transition. A combination of in-person assessments, telephone assessments, and in-clinic data collection were utilized to assess glycemic control, adherence, quality of life, psychological status, and hypothesized mediators of these outcomes.

A pilot study indicated high perceived relevance of the intervention approach by families across the age range, and strong feasibility of integrating the approach into the clinical setting. Findings from the main trial demonstrated a positive intervention effect on glycemic control at 2-year follow-up. This intervention effect was stronger among adolescents than pre-adolescents. The improvement in glycemic control attributable to the intervention was accompanied by a decrease in the occurrence of moderate hypoglycemia. Further, the intervention was similarly effective across income levels.

To request a copy of the intervention materials, email tonja.nansel@nih.gov.

Diabetes Personal Trainer Study

Participants in this study were recruited from two pediatric clinical sites: a university-affiliated clinic and a clinic housed in a pediatric hospital. A total of 81 youth (ages 11 to 16) with type 1 diabetes, along with a parent or guardian, were recruited and randomized to receive either educational materials or a "personal trainer" intervention. Based on principles of motivational interviewing and applied behavior analysis, the intervention included six in-person contacts over approximately 2 months supplemented with telephone contacts. The intervention protocol was administered by specially trained undergraduate and graduate students, who served as "diabetes personal trainers." They assisted youth to assess diabetes management practice difficulties and barriers, set goals for improving diabetes management practices, and engaged in problem-solving to meet these goals. An intervention effect on glycemic control was observed post-intervention and was maintained, virtually unchanged in magnitude, through 2-year follow-up. The intervention effect was observed among adolescents, but not among pre-adolescents.

Developmental Influences on Management of Type 1 Diabetes

This longitudinal study examined the influence of family, social, and behavioral variables on diabetes self-management behaviors with a particular focus on adolescent developmental transitions. One goal of this study was to identify factors that predict adherence and glycemic control of youth during this transition period. Self-efficacy, maturity, family and social support, and attitudes toward diabetes management were assessed in a sample of 87 adolescents with type 1 diabetes (ages 10 to 16) and their parents. Assessments were obtained at baseline, 6 months, 12 months, and 24 months.

Principal Investigator

Tonja Nansel, Ph.D.

Division Collaborators

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Publications

  • Dempster, K. W., Liu, A., & Nansel, T. R. (2019). Depression and parenting in youth with type 1 diabetes: Are general and diabetes-specific parenting behaviors associated with depressive symptoms over a 2-year period?. Journal of Behavioral Medicine, 42(5), 842–850. PMID: 30694403
  • Nansel T. R. (2018). The search for effective behavioural approaches for adolescent type 1 diabetes management. The Lancet. Child & Adolescent Health, 2(9), 622–623. PMID: 30119751
  • Thomas, D. M., Lipsky, L. M., Liu, A., & Nansel, T. R. (2018). Income relates to adherence in youth with type 1 diabetes through parenting constructs. Journal of Developmental and Behavioral Pediatrics. PMID: 29782387
  • Gee, B. T., Nansel, T. R., & Liu, A. (2017). Reduction of hypoglycemic events with a behavioral intervention: a randomized clinical trial for pediatric patients with type 1 diabetes mellitus. Diabetic Medicine, 34(3): 340-347. PMID: 25763988
  • Nansel, T. R., Thomas, D. M., & Liu, A. (2015). Efficacy of a behavioral intervention for pediatric type 1 diabetes across income. American Journal of Preventive Medicine, 49(6): 930-934. PMID: 26231856
  • Nansel, T. R., Lipsky, L. M., & Iannotti, R. J. (2013). Cross-sectional and longitudinal relationships of body mass index with glycemic control in children and adolescents with type 1 diabetes mellitus. Diabetes Research and Clinical Practice, 100(1): 126-132. PMID: 23339757
  • Nansel, T. R., Iannotti, R. J., & Liu, A. (2012). Clinic-integrated behavioral intervention for families of youth with type 1 diabetes: Randomized clinical trial. Pediatrics, 129(4): e866-e873. PMID: 22392172
  • Alleyn, C. R., Laffel, L. M., Volkening, L. K., Anderson, B. J., Nansel, T. R., Wysocki, T., & Weissberg-Benchell, J. (2011). Comparison of longitudinal point-of-care and high-performance liquid chromatography HbA1c measurements in a multi-centre trial. Diabetic Medicine, 28(12), 1525-1529. PMID: 21824185
  • Markowitz, J. T., Laffel, L. M., Volkening, L. K., Anderson, B. J., Nansel, T. R., Weissberg-Benchell, J., & Wysocki, T. (2011). Validation of an abbreviated adherence measure for youth with type 1 diabetes. Diabetic Medicine, 28(9): 1113-1117. PMID: 21843307
  • Robinson, E. M., Iannotti, R. J., Schneider, S., Nansel, T. R., Haynie, D. L., & Sobel, D. O. (2011). Parenting goals: Predictors of parent involvement in disease management of children with type 1 diabetes. Journal of Child Health Care, 15(3): 199-209. PMID: 21917595
  • Nansel, T. R., Iannotti, R. J., Simons-Morton, B. G., Plotnick, L. P., Clark, L. M., & Zeitzoff, L. (2009). Long-term maintenance of treatment outcomes: Diabetes personal trainer intervention for youth with type 1 diabetes. Diabetes Care, 32(5): 807-809. PMID: 19208916
  • Nansel, T. R., Anderson, B. J., Laffel, L. M., Simons-Morton, B. G., Weissberg-Benchell, J., Wysocki, T., Iannotti, R. J., Holmbeck, G. N., Hood, K. K., & Lochrie, A. S. (2009). A multi-site trial of a clinic-integrated intervention for promoting family management of pediatric type 1 diabetes: Feasibility and design. Pediatric Diabetes, 10(2): 105-115. PMID: 18721167
  • Nansel, T. R., Rovner, A. J., Haynie, D., Iannotti, R. J., Simons-Morton, B., Wysocki, T., Anderson, B., Weissberg-Benchell, J., & Laffel, L. (2009). Development and validation of the Collaborative Parent Involvement Scale for youths with type 1 diabetes. Journal of Pediatric Psychology, 34(1): 30-40. PMID: 18567926
  • Weissberg-Benchell, J., Nansel, T., Holmbeck, G., Chen, R., Anderson, B., Wysocki, T., Laffel, L., & Steering Committee of the Family Management of Diabetes Study. (2009). Generic and diabetes-specific parent-child behaviors and quality of life among youth with type 1 diabetes. Journal of Pediatric Psychology, 34(9), 977-988. PMID: 19270028
  • Wysocki, T., Nansel, T. R., Holmbeck, G. N., Chen, R., Laffel, L., Anderson, B. J., Weissberg-Benchell, J., & Steering Committee of the Family Management of Childhood Diabetes Study. (2009). Collaborative involvement of primary and secondary caregivers: Associations with youths' diabetes outcomes. Journal of Pediatric Psychology, 34(8): 869-881. PMID: 19112077
  • Anderson, B. J., Holmbeck, G., Iannotti, R. J., McKay, S. V., Lochrie, A., Volkening, L. K., & Laffel, L. (2009). Dyadic measures of the parent-child relationship during the transition to adolescence and glycemic control in children with type 1 diabetes. Families, Systems, and Health, 27(2): 141-152. PMID: 19630455
  • Schneider, S., Iannotti, R. J., Nansel, T. R., Haynie, D. L., Sobel, D. O., & Simons-Morton, B. (2009). Assessment of an illness-specific dimension of self-esteem in youths with type 1 diabetes. Journal of Pediatric Psychology, 34(3): 283-293. PMID: 18664512
  • Nansel, T. R., Weissberg-Benchell, J., Wysocki, T., Laffel, L., Anderson, B., & Steering Committee of the Family Management of Diabetes Study. (2008). Quality of life in youth with type 1 diabetes: A comparison of general and diabetes-specific measures and support for a unitary diabetes quality-of-life construct. Diabetic Medicine, 25(11): 1316-1323. PMID: 19046222
  • Botello-Harbaum, M., Nansel, T., Haynie, D. L., Iannotti, R. J., & Simons-Morton B. (2008). Responsive parenting is associated with improved type 1 diabetes-related quality of life. Child: Care, Health, and Development, 34(5): 675-681. PMID: 18796059
  • Wysocki, T., Iannotti, R., Weissberg-Benchell, J., Laffel, L., Hood, K., Anderson, B., Chen, R., & Family Management of Childhood Diabetes Steering Committee. (2008). Diabetes problem solving by youths with type 1 diabetes and their caregivers: Measurement, validation, and longitudinal associations with glycemic control. Journal of Pediatric Psychology, 33(8): 875-884. PMID: 18346973
  • Mehta, S. N., Volkening, L. K., Anderson, B. J., Nansel, T., Weissberg-Benchell, J., Wysocki, T., Laffel, L. M., & Family Management of Childhood Diabetes Steering Committee. (2008). Dietary behaviors predict glycemic control in youth with type 1 diabetes. Diabetes Care, 31(7): 1318-1320. PMID: 18390798
  • Nansel, T. R., Iannotti, R. J., Simons-Morton, B. G., Cox, C., Plotnick, L. P., Clark, L. M., & Zeitzoff, L. (2007). Short-term and 1-year outcomes of a diabetes personal trainer intervention among youth with type 1 diabetes. Diabetes Care, 30(10): 2471-2477. PMID: 17620445
  • Iannotti, R. J., Schneider S, Nansel, T. R., Haynie, D. L., Plotnick, L. P., Clark, L. M., Sobel, D. O., & Simons-Morton, B. (2006). Self-efficacy, outcome expectations, and diabetes self-management in adolescents with type 1 diabetes. Journal of Developmental and Behavioral Pediatrics, 27(2): 98-105. PMID: 16682872
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