Prevention Research Branch (PRB)

PRB Research - Health Behavior Change in Medical Settings

Family Management of Type 1 Diabetes in Youth

Successful management of 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 to date suggests that adherence, quality of life, and glycemic control could be enhanced if behavioral interventions were routinely implemented as part of standard care. This series of studies examines determinants of health outcomes, and tests the efficacy of a clinic-integrated behavioral intervention for families of youth with type 1 diabetes.

Principal Investigator

Tonja Nansel, Ph.D.

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, six months, 12 months, and 24 months.

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 two 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 two-year follow-up. The intervention effect was observed among adolescents, but not among pre-adolescents.

Transition from Pediatric to Adult Diabetes Care

The purpose of this pilot study was to examine diabetes self-management and psychosocial concomitants before, during, and after the transition from pediatric diabetes clinic to adult diabetes care. It included: a survey of youth who are more than one year from turning 18 to determine their expectations regarding the transition; an assessment of the experiences of youth ages 18 to 22 who provided their retrospective views on the transition period; and a comparison of the experiences of youth in a pediatric clinic that involve an adult care physician in the transition to adult care with the experiences of youth in a matched clinic that provides the standard transition experience. It is expected that parents and children who have not been provided with a coordinated transition will have a poorer psychosocial profile and that there will be a decline in diabetes management and glycemic control relative to those youth who have a coordinated transition.

Family Management of Diabetes Multisite Trial

The 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 both 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 two-year follow-up. This intervention effect was observed specifically among adolescents, but not pre-adolescents.

DESPR Collaborators

• Ronald Iannotti, Ph.D.
• Aiyi Liu, Ph.D.
• Leah Lipsky, Ph.D., M.H.S.
• Denise Haynie, Ph.D., M.P.H.
• Bruce Simons-Morton, Ed.D., M.P.H.

Publications

• Nansel TR, Iannotti RJ, Liu A. Clinic-integrated behavioral intervention for families of youth with type 1 diabetes randomized clinical trial. Pediatrics 2012; 129: e866-e873. PMID: 22392172
• Robinson EM, Iannotti RJ, Schneider S, Nansel TR, Haynie DL, Sobel DO. Parenting goals: predictors of parent involvement in disease management in children with type 1 diabetes. Journal of Child Health Care 2011; 15(3): 199-209. PMID: 21917595
• Allyn CR, Laffel LMB, Volkening LK, Anderson BJ, Nansel TR, Wysocki T, Weissberg-Benchell J. Comparison of longitudinal point-of-care and high-performance liquid chromatography HbA1c measurements in a multi-centre trial. Diabetic Medicine 2011; 28(12), 1525-1529. PMID: 21824185
• Markowitz JT, Laffel LMB, Volkening LK, Anderson BJ, Nansel TR, Weissberg-Benchell J, Wysocki T. Validation of an abbreviated adherence measure for young people with type 1 diabetes. Diabetic Medicine 2011; 28(9): 1113-1117. PMID: 21843307
• Nansel TR, Iannotti RJ, Simons-Morton B, Plotnick LP, Clark LM, Zeitzoff L. Long-term maintenance of treatment outcomes: Diabetes Personal Trainer intervention for youth with type 1 diabetes. Diabetes Care 2009, 32: 807-809. NIHMSID #106768. PMID: 19208916
• Nansel TR, Rovner A, Haynie DL, Iannotti RJ, Simons-Morton B, Wysocki T, Anderson B, Weissberg-Benchell J, Laffel L. Development and validation of the collaborative parent involvement scale for youths with type 1 diabetes. Journal of Pediatric Psychology 2009; 34(1): 30-40. PMCID: PMC2626144 PMID: 18567926
• Schneider S, Iannotti R, Nansel TR, Haynie DL, Sobel DO, Simons-Morton B. Assessment of an illness-specific dimension of self-esteem in youths with type 1 diabetes. Journal of Pediatric Psychology 2009, 34: 30-40. PMID: 18664512
• Weissberg-Benchell J, Nansel TR, Holmbeck G, Chen R, Anderson B, Wysocki T, Laffel L, for the Steering Committee of the Family Management of Diabetes Study. Generic and diabetes-specific parent--child behaviors and quality of life among youth with type 1 diabetes. Journal of Pediatric Psychology 2009, 34(9), 977-988. PMID: 19270028
• Wysocki T, Nansel TR, Holmbeck GN, Chen R, Laffel L, Anderson BJ, Weissberg-Benchell J, for the Steering Committee of the Family Management of Diabetes Study. Collaborative involvement of primary and secondary caregivers: associations with youths' diabetes outcomes. Journal of Pediatric Psychology 2009, 34(8): 869-881. PMID: 19112077
• Anderson BA, Holmbeck G, Iannotti RJ, McKay SV, Lochrie A, Volkening L, Laffel L, Nansel T for the Steering Committee of the Family Management of Diabetes Study. 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 2009; 27(2): 141--152. NIHMSID #106762 PMID: 19630455
• Nansel TR, Anderson BJ, Laffel LMB, Simons-Morton B, Weissberg-Benchell J, Wysocki T, Iannotti RJ, Holmbeck G, Hood KK, Lochrie AS. A multisite trial of a clinic-integrated intervention for promoting family management of pediatric type 1 diabetes: feasibility and design. Pediatric Diabetes 2009; 10(2): 105-115. NIHMSID #60093 PMID: 18721167
• Nansel TR, Weissberg-Benchell J, Wysocki T, Laffel L, Anderson B, for the Steering Committee of the Family Management of Diabetes Study. Quality of life in children with type 1 diabetes: a comparison of general and diabetes-specific measures, and support for a unitary diabetes quality of life construct. Diabetic Medicine 2008; 25: 1316-1323. PMCID: PMC2597420 PMID: 19046222
• Wysocki T, Iannotti R, Weissberg-Benchell J, Laffel L, Hood K, Anderson B, Chen R, Nansel TR for the Family Management of Childhood Diabetes Steering Committee. Diabetes problem solving by youths with type 1 diabetes and their caregivers: measurement, validation, and longitudinal associations with glycemic control. Journal of Pediatric Psychology 2008; 33(8): 875-884. PMCID: PMC2493510 PMID: 18346973
• Mehta S, Volkening L, Laffel L, Nansel T, for the Family Management of Diabetes Steering Committee. Dietary behaviors predict glycemic control in youth with type 1 diabetes. Diabetes Care 2008; 31(7): 1318-1320. PMCID: PMC2453641 PMID: 18390798
• Botello-Harbaum M, Nansel T, Iannotti RJ, Simons-Morton B. Responsive parenting is associated with improved type 1 diabetes-related quality of life. Child: Care, Health and Development 2008; 34(5): 675-681. PMCID: PMC2562340 PMID: 18796059
• Nansel TR, Iannotti RJ, Simons-Morton B, Cox C., Plotnick LP, Clark LM, Zeitzoff L. Diabetes personal trainer outcomes: short-term and one-year outcomes of a diabetes personal trainer intervention among youth with type 1 diabetes. Diabetes Care 2007; 30: 2471-2477. PMCID: PMC2365717 PMID: 17620445
• Schneider S, Iannotti RJ, Nansel TR, Haynie DL, Simons-Morton B. Identification of distinct self-management styles of adolescents with type 1 diabetes. Diabetes Care 2007; 30(5), 1107-1112. PMID: 17322481
• Iannotti RJ, Nansel TR, Schneider S, Haynie DL, Simons-Morton B, Plotnick L, Clark L, Sobel DO. Assessing regimen adherence of adolescents with type 1 diabetes. Diabetes Care 2006; 29(10): 2263-2267. PMID: 17003304
• Iannotti RJ, Schneider S, Nansel TR, Haynie DL, Plotnick LP, Clark LM, Sobel DO, Simons-Morton B. Self-efficacy, outcome expectations, and diabetes self-management in adolescents with type 1 diabetes. Journal of Developmental and Behavioral Pediatrics 2006; 27(2): 98-105. PMID: 16682872