Chapter 21 Alan M. Delamater, Ashley N. Marchante, and Amber L. Daigre Regimen adherence is critical to chronic illness management. It has been generally acknowledged for years that nonadherence rates for chronic illness regimens and for lifestyle changes in adults are around 50% (Haynes, Taylor, & Sackett, 1979). Poor regimen adherence is also a major health concern among youth with chronic illnesses, with the same approximate rate of 50% average adherence (Drotar, 2000; La Greca & Mackey, 2009; Rapoff, 2010). For example, in the case of type 1 diabetes, the regimen is complex and consists of multiple components, including blood glucose monitoring, insulin administration, and monitoring and modification of dietary intake and physical activity. The aim of the regimen is to balance all of the components in order to achieve close-to-normal blood glucose levels while at the same time avoiding hypo- and hyperglycemia. Achieving optimal glycemic control requires the integration of considerable amounts of information concerning factors affecting blood glucose levels on an ongoing basis and then applying problem-solving techniques to manage blood glucose. This is particularly challenging for children and adolescents, where parental involvement is one of the key elements to successful diabetes management (Anderson, Ho, Brackett, Finkelstein, & Laffel, 1997). Not surprisingly, research has shown that optimal regimen adherence and glycemic control is difficult to achieve for many youth with diabetes (Delamater, 2012). For example, studies have shown that blood glucose monitoring typically was not performed as often as prescribed, and blood glucose data were not routinely used to make appropriate changes in the regimen (Delamater et al., 1989; Weissberg-Benchell et al., 1995; Wysocki et al., 2008). Insulin often is omitted, particularly for adolescent girls concerned with body weight issues, underdosing is common, and youth frequently do not take insulin boluses when they eat (Bryden et al., 1999; Burdick et al., 2004; Neumark-Sztainer et al., 2002; Weissberg-Benchell et al., 1995). It is important to note that early adolescence represents a high-risk time for diabetes management, with worsening of regimen adherence and glycemic control typically observed over time (Helgeson et al., 2010; Jacobson et al., 1990; Johnson et al., 1992). In understanding regimen adherence in children and adolescents with chronic health conditions, it is helpful to use an ecological model in which the child’s adherence is determined by multiple levels of influence, including child characteristics (e.g., age, temperament, psychological functioning); parent, family, and social factors (e.g., parental psychological functioning, family structure and socioeconomic status, parental monitoring and support of regimen, family conflict, peer relationships); medical system factors (e.g., relationships with doctors, frequency of contact with health care team); as well as cultural factors (e.g., culture-specific health beliefs) (Delamater, 2012). It is also helpful to consider the constructs of regimen compliance and adherence. Most health care providers use the term “compliance” instead of “adherence,” although these concepts are conceptually very different. Compliance has been defined as “the extent to which a person’s behavior coincides with medical advice” (Haynes et al., 1979). With this definition, noncompliance essentially means that patients disobey the advice of their doctors. Patient noncompliance is attributed to personal qualities of patients, such as lack of will power or discipline, forgetfulness, or low level of education. The concept of noncompliance assumes a negative attitude toward patients and also places them in a passive, unequal role in relationship to their health care providers. Adherence has been defined as the “active, voluntary collaborative involvement of the patient in a mutually acceptable course of behavior to produce a therapeutic result” (Meichenbaum & Turk, 1987, p. 20). The concept of adherence implies choice and mutuality in goal setting, treatment planning, and implementation of the regimen. Patients internalize treatment recommendations and then either adhere to these internal guidelines or do not adhere (i.e., volitional nonadherence). However, the concept of adherence itself has been criticized because of its focus on patients and because of the nature of medical regimens, which often are dynamic rather than static (Glasgow & Anderson, 1999). It is useful to think of adherence as a multidimensional rather than unitary construct, because patients may adhere well to one aspect of the regimen but not to others. Another way to conceptualize patient behavior related to disease management is to use terms such as “self-care behaviors” or “self-management,” which simply describe the types of and frequencies of specific behaviors patients engage in to manage their health condition. In this chapter, we review research related to regimen adherence in pediatric patients with chronic health conditions. Because considerable research has been conducted in the areas of pediatric diabetes and asthma, we focus on illustrative research in these areas of chronic illness (with an emphasis on diabetes). We first review research on evidence-based interventions to promote adherence and then consider the issues of parental involvement, adaptations to interventions, and assessment of regimen adherence. After describing an illustrative case example, we conclude the chapter with a summary of the main points. Given that about one half of chronically ill children struggle with nonadherence, researchers have paid significant attention to the development and implementation of evidence-based interventions (Drotar, 2000; Graves, Roberts, Rapoff, & Boyer, 2010; Kahana, Drotar, & Frazier, 2008; La Greca et al., 2009; Lemanek, Kamps, & Chung, 2001; Stark, 2013). Interventions that promote increased adherence among children and adolescents span a wide range of medical illnesses; however, the areas of asthma and diabetes have been especially well studied (Kahana et al., 2008). Interventions to improve regimen adherence include three main approaches: educational, behavioral, and psychologically based interventions. Knowledge- and education-based interventions seek to increase disease education and skills; behavioral interventions seek to alter specific behaviors involved in disease management (e.g., blood glucose monitoring); and psychologically based interventions target the emotional and social effects of the disorder as they may impact on regimen adherence (Hood, Rohan, Peterson, & Drotar, 2010). Our review highlights results from adherence intervention studies for young patients with type 1 diabetes to illustrate the approaches used. In pediatric diabetes, increased adherence has been associated with improved glycemic control (Delamater, 2012; Johnson et al., 1992; Silverstein et al., 2005). A number of controlled studies document the efficacy of various interventions to improve regimen adherence in youth with type 1 diabetes (Delamater, 2009). With regard to asthma, higher levels of regimen adherence have been associated with improved lung functioning as well as decreased school absenteeism and reduction in nights disturbed by asthma attacks (Wolf, Guevara, Grum, Clark, & Cates, 2008). Educational interventions for adherence provide verbal or written information about the nature of childhood illness and the various treatment options and strategies for disease management (Dean, Walters, & Hall, 2010). The assumption of this approach is that patients and their parents lack important disease-specific knowledge and skills, and therefore teaching them about disease management will improve regimen adherence. Didactic educational approaches, however, typically do not include exploration of individual barriers that are specific to each patient; rather, they offer a straightforward instructional format that is applicable across patients with the same diagnosis. Educational interventions may be provided in a single session or across several sessions and may be conducted with individuals or with groups (Farber & Oliveria, 2004; Hughes, McLeod, Garner, & Goldbloom, 1991). Research in adult asthma populations has shown that purely informational education has little impact on health outcomes (Gibson et al., 2002); however, results with pediatric populations are somewhat more promising. In a review of educational interventions for children and adolescents with asthma, Guevara, Wolf, Grum, and Clark (2003) examined 32 studies and found that significant improvements in lung function were associated with self-management education programs. Additionally, for randomized educational intervention studies in which one group received usual care, significant effects were seen between the intervention and control groups. Specifically, children receiving the educational interventions demonstrated reduced days of school absence, reduced restriction of activity, and decreased emergency department utilization (Guevera et al., 2003). Educational interventions to increase disease-related knowledge and skills clearly are necessary and important but may not be sufficient to lead to behavior change. While the evidence from this review suggests the utility of educational interventions within pediatric populations, it is important to note that educational interventions focusing on self-management may include behavioral components, such as goal setting and self-monitoring, which may have stronger effects on regimen adherence. In the pediatric obesity intervention literature, nutrition education (without behavioral components) has been utilized as a control group for family-based intervention studies and has consistently been shown to not be effective at behavior change leading to weight control (Epstein, Valoski, Wing, & McCurly, 1994). Behavioral interventions are problem focused and address specific behaviors and barriers that preclude patients from optimal regimen adherence. Systematic reviews indicate that controlled studies have shown the efficacy of behavioral interventions for children and adolescents with diabetes (Delamater, 2009, 2012; Hood et al., 2010), although this literature does have some methodological limitations (Northam, Todd, & Cameron, 2005). Most of these interventions have included parents as an integral part of treatment. Results indicate that family-based, behavioral strategies, such as self-monitoring of regimen behaviors, goal setting, positive reinforcement, behavioral contracts, supportive parental communications, and appropriately shared responsibility for diabetes management, have improved regimen adherence as well as glycemic control of youth with diabetes (Anderson et al., 1997; Satin, La Greca, Zigo, & Skyler, 1989). Besides improving regimen adherence, family-based behavioral interventions also have improved the parent–adolescent relationship, reduced family conflict, and improved long-term glycemic control (Wysocki et al., 2006, 2007). Given the crisis that diagnosis presents for children and families, the period just after diagnosis presents opportunities for behavioral and psychological interventions. Psychoeducational family-based behavioral interventions with children and their families that promote problem-solving skills and increase parental support through training in positive reinforcement early in the disease course have improved long-term glycemic control of children (Delamater et al., 1990). Research findings indicate that when parents allow older children and adolescents to have self-care autonomy without sufficient cognitive and social maturity, they are more likely to have regimen adherence problems and poor glycemic control (Wysocki et al., 1996). Thus, a critical aspect of behavioral family management of diabetes is finding ways for parents and family members to remain involved and supportive, but not intrusive, in their youngsters’ daily care. An intervention to promote family teamwork increased family involvement without causing family conflict or adversely affecting youth quality of life and also prevented worsening of glycemic control (Laffel et al., 2003). This type of psychoeducational intervention to change family behavior was delivered during regular outpatient visits and shown to improve the frequency of outpatient visits and reduce acute adverse outcomes, such as hypoglycemia and emergency department visits (Svoren, Butler, Levine, Anderson, & Laffel, 2003). A recent multisite controlled trial evaluated the effects of a family teamwork intervention implemented during routine clinic visits over a 2-year period with 9- to 14-year-old children with diabetes (Nansel, Iannotti, & Liu, 2012). Those assigned to the family teamwork group received a behavioral, problem-focused intervention focused on identifying strengths, barriers, and benefits of behavior change. After identifying these components, therapists and families worked together to resolve maladaptive communication patterns, solidify concrete action plans, and define roles and responsibilities. Results revealed a significant improvement in glycemic control from the baseline to 2-year assessment for the older adolescent participants (12–14 years). When compared to the usual-care group, the effect of intervention began after 12 months (approximately three to four sessions) and consistently increased in magnitude until the final 24-month assessment. Interestingly, there were no effects noted on the measure of regimen adherence, and regimen adherence was only weakly associated with the measure of glycemic control (glycosylated hemoglobin A1c). A recent randomized trial of a similar parent–youth teamwork intervention was shown to improve regimen adherence and health outcomes in youth with asthma (Duncan et al., 2012). Another behavioral intervention approach utilized intensive home-based multisystemic therapy with inner-city adolescents in chronically poor metabolic control, a patient population that is at high risk for poor health outcomes and has not received much attention in the intervention literature. The results of a controlled trial indicated this approach improved frequency of blood glucose monitoring and glycemic control and reduced inpatient admissions and medical costs (Ellis, Frey, et al., 2005; Ellis, Naar-King, et al., 2005). Motivational interviewing appears to be a promising intervention approach for adolescents with diabetes. The results of a multicenter randomized trial demonstrated that motivational interviewing with adolescents improved long-term glycemic control and quality of life (Channon et al., 2007). Another study targeting motivation with an individualized personal trainer showed improved glycemic outcomes in older but not younger adolescents (Nansel et al., 2007). A recent uncontrolled pilot study examined the effects of a multicomponent motivational intervention for adolescents with poor glycemic control (Stanger et al., 2013). Included in the intervention approach was family-based contingency management. Results indicated increased blood glucose monitoring and improved glycemic control over time, suggesting that this approach may be clinically effective. Similarly, the use of motivational interviewing has been useful with youth who have asthma. A recent study provides preliminary support for the use of motivation interviewing intervention to increase regimen adherence in inner-city, African American youth with asthma (Riekert, Borrelli, Bilderback, & Rand, 2011). Psychological interventions for disease management provide a comprehensive approach to addressing adherence. These interventions often target self-management skills as well as emotional components, such as patient and family adjustment to the diagnosis. Some studies in the diabetes area target psychological conditions that may influence regimen adherence, but more research is needed addressing psychological functioning. For example, depression in youth has been shown to be associated with decreased regimen adherence over time (McGrady & Hood, 2010), but intervention studies to reduce depression and evaluate the effects on regimen adherence have not been reported yet. Similarly, given the high rate of eating disorders among youth with diabetes and the relationship of eating disorders to poor disease management (Neumark-Sztainer et al., 2002; Rydall, Rodin, Olmsted, Devenyi, & Daneman, 1997), it would be important to examine the effects on regimen adherence of interventions addressing disordered eating in youth. The stress of diagnosis of a disease like diabetes is significant for children and their parents. Trials involving psychosocial intervention for children and parents after the diagnosis of type 1 diabetes showed improved family functioning but no effects on glycemic control (Sullivan-Bolyai, 2004; Sundelin, Forsander, & Matttson, 1996). Several reports of interventions for youth with diabetes target stress management and coping skills; typically the interventions are conducted in small groups of youth rather than with individual patients. This is important because research has shown that anxious youth have lower levels of regimen adherence (Herzer & Hood, 2010), and higher levels of stress and poor coping have been associated with lower regimen adherence and poor glycemic control (Delamater, Patino-Fernandez, Smith, & Bubb, 2013; Graue, Wentzel-Larsen, Bru, Hanestad, & Sovir, 2004; Hanson et al., 1989). Stress management and coping skills training including problem solving has reduced diabetes-related stress (Boardway, Delamater, Tomakowsky, & Gutai, 1993; Hains, Davies, Parton, Totka, & Amoroso-Camarata, 2000), improved social interaction (Mendez & Belendez, 1997), and increased glucose monitoring and improved glycemic control (Cook, Herold, Edidin, & Briars, 2002). Controlled studies of coping skills training have demonstrated improved glycemic control and quality of life for adolescents on intensive insulin regimens (Grey, Boland, Davidson, Li, & Tamborlane, 2000). Brazil, McLean, Abbey, and Musselman (1997) compared inpatient versus outpatient psychosocial interventions for children and families dealing with childhood asthma. The outpatient intervention was a summer day camp that targeted management of physical and emotional components of the disease. Children were taught relaxation techniques, and social workers addressed the social and emotional issues associated with asthma. The inpatient intervention contained similar components but was implemented in a 3-month inpatient asthma rehabilitation program. Findings indicated significant differences between the groups, with the inpatient group demonstrating greater improvements, including fewer asthma attacks and more positive emotions about having asthma. Several meta-analyses have evaluated regimen adherence interventions across all evidence-based treatment approaches, providing the opportunity to examine the relative efficacy of various approaches (Dean et al., 2010; Graves et al., 2010; Kahana et al., 2008). In general, results indicate that improved health outcomes were significantly better for studies using a combination of behavioral and educational interventions (Dean et al., 2010; Graves et al., 2010). Similarly, the analysis by Kahana et al. (2008) revealed that purely educational interventions were related to negligible changes in adherence while psychological and behavioral approaches yielded greater improvements in adherence behaviors with medium effect sizes (mean d = .44 and .54, respectively). The results of controlled intervention research in the area of pediatric diabetes have shown that family-based interventions utilizing positive reinforcement and behavioral contracts, communication skills training, negotiation of diabetes management goals, and collaborative problem-solving skills training have led to improved regimen behaviors, glycemic control, and family relationships. Group interventions for young people with diabetes targeting stress management and coping skills also have shown positive effects on regimen adherence, glycemic control, and quality of life. Individual interventions with adolescents have shown motivational interviewing to improve long-term glycemic control and psychosocial outcomes. More research is needed to address psychological conditions such as depression and eating disorders in youth and to evaluate the effects on regimen adherence and health outcomes. The regimens associated with childhood chronic illness are often rigorous and may contain several components. In the case of childhood diabetes, a single day may include several blood glucose checks (at mealtimes, prior to engaging in physical activity, and before bedtime), close monitoring of carbohydrate intake, correct measurement and administration of insulin, and ensuring easy access to necessary medical supplies (American Diabetes Association, 2011; Hansen, Weissbrod, Schwartz, & Taylor, 2012; Silverstein et al., 2005). Given the numerous responsibilities of managing chronic illness, it is essential that parents play an integral role in the management of their child’s illness (Laffel et al., 2003; Wysocki, Buckloh, & Greco, 2009). Research has documented the significant impact of family functioning on diabetes management, suggesting that parenting behaviors may be important in promoting healthy adaptation to the disease (Grey et al., 2000; Hamilton & Daneman, 2002; Wysocki, 1993). Studies have shown that parental involvement may be essential for successful diabetes management (Ellis et al., 2007; Skinner, Murphy, & Huws-Thomas, 2005). Parents provide an example of goal setting and planning for their chronically ill children, both of which are important components of regimen adherence (Robinson et al., 2011). Parenting style also can influence self-management behaviors, with parental warmth being associated with better regimen adherence and parental restrictiveness associated with poorer glycemic control in young children with type 1 diabetes (Davis et al., 2001; Shorer et al., 2011). Family organization also plays an important role. Children who are a part of families with more organization and routine demonstrate better regimen adherence (Herge et al., 2012). Research with adult chronic illness populations underscores the impact of family function on self-management behaviors (Rosland, Heisler, & Piette, 2012). Across several diagnoses, including diabetes, arthritis, cardiovascular disease, and end-stage renal disease, family behaviors that focus on control, criticism, and overprotection are associated with negative health outcomes. This is certainly a finding that can be applied to parenting of young children with chronic illness. Although a positive influence in many respects, parental involvement in caring for a child with chronic illness may represent a significant stressor for parents. The impact of this stressor has been well documented in pediatric literature, outlining the increased rates of parental stress and risk for parental mental health problems (Jaser, Whittemore, Ambrosino, Lindemann, & Grey, 2008; Quittner, DiGirolamo, Michel, & Eigen, 1992; Streisand, Braniecki, Tercyak, & Kazak, 2001; Thompson et al., 1994). These findings are most applicable to mothers who more frequently take on the caregiving tasks related to disease management. The impact on fathers also has been examined in research where results revealed similar psychological distress in fathers (Hansen et al., 2012). These included clinically significant sleep problems, anxiety, and depressive symptoms. There are several important factors to consider when assessing regimen adherence and intervening to improve it in youth with chronic illnesses. These factors may include developmental effects, demographic variables such as culture and socioeconomic status, illness comorbidity, and health beliefs. It is important to consider each of these variables in the context of regimen adherence to guide adherence-promoting interventions.
Adherence to Medical Regimens
BRIEF OVERVIEW OF PROBLEM
EVIDENCE-BASED APPROACHES TO DEALING WITH NONADHERENCE
Educational Interventions
Behavioral Interventions
Psychological/Psychosocial Interventions
Intervention Meta-Analyses
Summary of Intervention Research
PARENTAL INVOLVEMENT
ADAPTATIONS AND MODIFICATIONS
Developmental Issues
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