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Editorial| Volume 52, ISSUE 1, P2-3, January 2013

Improving Adherence Among Adolescents With Type 1 Diabetes

      See Related Article p. 28.
      Meeting the many demands of managing type 1 diabetes (T1D) is difficult, even for motivated adults. Numerous glucose checks, consideration of insulin dosing, diet and exercise, managing logistics of care, and problem solving all require some degree of attention and energy around the clock every day of the year. For adolescents, these burdens may be particularly onerous [
      • Borus J.S.
      • Laffel L.
      Adherence challenges in the management of type 1 diabetes in adolescents: Prevention and intervention.
      ], coming at a time in social and cognitive development associated with spontaneity, increasing independence, and still developing executive function. Yet some adolescents succeed in controlling their diabetes. What allows these teens to maintain good control while others struggle, how does the clinician identify these groups, and what can they do to intervene for those who are putting their health at risk? Typically, the answer is found not in lack of knowledge of the illness itself, but lack of support for the adolescent.
      In Hilliard et al's recent work, nearly 40% of adolescents studied met American Diabetes Association goals for glycosylated hemoglobin (HbA1c) and number of daily glucose checks [
      • Hilliard M.E.
      • Wu Y.P.
      • Rausch J.
      • et al.
      Predictors of deteriorations in diabetes management and control in adolescents with type 1 diabetes.
      ]. This adherent group tended to have intact educated families, lower levels of negative affect both in general and specifically related to blood glucose monitoring (BGM), and less conflict within the family about diabetes. They also tended to be nonminority youth and use continuous subcutaneous insulin injection (the pump). This study contributes to the literature by providing an empirical basis for grouping these patients and showing consistency of results over a 2-year span.
      These findings are generally in accord with previous research and highlight the need for investment in helping adolescents with diabetes develop and use support networks, typically their families. Throughout the literature, the best control tends to be found in adolescents who have help managing the omnipresent tasks of diabetes management. There is strong evidence demonstrating a fundamental connection between frequency of BGM, one of the bedrocks of any treatment regimen, and HbA1c [
      • Hood K.K.
      • Peterson C.M.
      • Rohan J.M.
      • Drotar D.
      Association between adherence and glycemic control in pediatric type 1 diabetes: A meta-analysis.
      ]. BGM can be seen as a measure of engagement and improves when families are more involved in a patient's diabetes care [
      • Anderson B.J.
      • Vangsness L.
      • Connell A.
      • et al.
      Family conflict, adherence, and glycaemic control in youth with short duration type 1 diabetes.
      ].
      Devices that made treatment easier (pumps) tend to improve outcomes, but there is often some regression in glycemic control over time and technology should not be seen as a panacea. Devices that give the adolescent more information do not necessarily impact outcomes, and technology that requires too much of the teen's energy leads to fall off in adherence. Perhaps the best example of this is found in data from JDRF's Continuous Glucose Monitoring Study [
      • Tamborlane W.V.
      • Beck R.W.
      • et al.
      Juvenile Diabetes Research Foundation Continuous Glucose Monitoring Study Group
      Continuous glucose monitoring and intensive treatment of type 1 diabetes.
      ], in which participants had a real-time sensor that informed them of their blood glucose. Despite (or perhaps because of) its promise of continuous feedback, adolescent patients had significantly lower rates of 6 days or more a week use than the adult or child groups in the cohort, illustrating that technology without support to help manage the opportunities it provides is not the answer.
      Mental health concerns also impact adherence outcomes. Rates of depression are substantially higher in teens with T1D than the general population; notably, affect and depression have been correlated with decreased BGM and higher HbA1c [
      • Hood K.K.
      • Huestis S.
      • Maher A.
      • et al.
      Depressive symptoms in children and adolescents with type 1 diabetes: Association with diabetes-specific characteristics.
      ,
      • McGrady M.E.
      • Laffel L.
      • Drotar D.
      • Repaske D.
      • Hood K.K.
      Depressive symptoms and glycemic control in adolescents with type 1 diabetes: Mediational role of blood glucose monitoring.
      ]. Furthermore, Hilliard's finding that higher levels of family conflict around diabetes predicted poorer outcomes is consistent with the work of Wysocki and Anderson and Ellis [
      • Wysocki T.
      • Harris M.A.
      • Buckloh L.M.
      • et al.
      Randomized, controlled trial of behavioral family systems therapy for diabetes: Maintenance and generalization of effects on parent-adolescent communication.
      ,
      • Ellis D.
      • Naar-King S.
      • Templin T.
      • et al.
      Multisystemic therapy for adolescents with poorly controlled type 1 diabetes: Reduced diabetic ketoacidosis admissions and related costs over 24 months.
      ]. These researchers have shown the importance of family involvement in T1D management and demonstrated improvements in care treating the family constellation rather than just the patient with diabetes.
      However, engaging patients and families is hard work, often requiring a substantial outlay of time, money, and energy, both by the patient's family and the medical system. The possibility of determining which teen patients are likely to do well and which are likely to struggle going forward allows for the tailoring of proactive interventions and outreach to at-risk groups to strengthen their supports. Modifiable risk factors provide a clear opportunity for intervention, but even nonmodifiable risk factors, which serve as markers for greater risk, have value in helping the clinician stratify need and judiciously appropriate often scant resources in this area.
      The basic understanding of how to treat diabetes with insulin is almost 100 years old, and the efficacy of limiting morbidity through intensive treatment is unquestioned [
      The Diabetes Control Complications Trial Research Group
      The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus.
      ]. It is well-known that the sequelae of T1D are both expensive [
      American Diabetes Association
      Economic costs of diabetes in the U.S. in 2007.
      ] and serious with long-term impacts for both patient and family. Yet, although almost 40% of the cohort in Hilliard's study maintained good glycemic control through excellent adherence behaviors, >60% were unable to do so despite receiving care at a tertiary pediatric medical center. These facts underscore the difficulty of dealing with a chronic disease such as diabetes on a daily basis—often the obstacles are not medical knowledge or technical expertise in treating illness, but building a milieu in which the patient is motivated and supported to perform the tasks needed to treat the condition every day. Data show that adolescents are not alone, as this struggle is found throughout the life course, with a majority of adults not meeting American Diabetes Association targets for HbA1c, blood pressure, or lipid control [
      • Dimeglio L.A.
      • Miller K.M.
      • Beck R.W.
      • et al.
      Most persons with type 1 diabetes do not meet clinical recommendations: An analysis from the T1D Exchange Registry.
      ]. Further study, such as replication of Hilliard's work as part of a multicenter effort, is warranted to learn more about the characteristics that predict patient trajectories and then what interventions, such as promoting improved family involvement, can be undertaken to shape them by improving adherence to treatment. Advocacy for these services is needed, as they are often seen as too expensive despite compelling cost-effectiveness data in a challenging financial environment [
      • Ellis D.
      • Naar-King S.
      • Templin T.
      • et al.
      Multisystemic therapy for adolescents with poorly controlled type 1 diabetes: Reduced diabetic ketoacidosis admissions and related costs over 24 months.
      ]. Effective treatments that can bring about improved adherence have great promise to reduce experienced burden of disease and bend the cost curve of medical care [
      • Wagner E.H.
      • Sandhu N.
      • Newton K.M.
      • et al.
      Effect of improved glycemic control on health care costs and utilization.
      ]. This highlights the need for continued discussion and attention to making it easier for adolescents with diabetes to treat their illness by expanding opportunities to build good family supports.

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