Edited by Frank J. Snoek and T. Chas Skinner
Diabetes in School-aged Children
1.9 Disease Course and Risk Factors: Implications for Clinical Practice
The groundwork for understanding stages of the disease course in diabetes has been laid by three major longitudinal investigations that have followed school aged children recently diagnosed with IDDM over the early years of their disease.
Two research teams followed recently diagnosed children and families over their first decade of life with diabetes.69,78,97–100 The third investigation, by Grey and colleagues,101 studied a newly diagnosed cohort of children carefully over their first two years of living with diabetes.
The longitudinal study by Kovacs et al.98,99 followed patients from 2-3 weeks after diagnosis for 6 years. At the end of the first year, the initial emotional distress of both parents and children seemed to have resolved.102,103 However, results from yearly evaluations indicated that as the duration of diabetes increased patients’ emotional distress about diabetes management again increased. Children rated the management regimen as more difficult the longer they had diabetes.98 This result contrasted with the finding that mothers of these children found it easier to cope with type 1 diabetes as duration increased.99 The finding that the mothers found it easier to cope with diabetes as duration increased ‘could reflect that the children had to take increasing responsibility for (their own) diabetes care’ (p. 630).98 Despite finding it easier to cope with diabetes, the level of emotional symptomatology in mothers also increased slightly after the first year. In addition, these longitudinal studies provided much evidence that initial emotional distress in both children and parents predicted later levels of such distress.98,99 These studies indicate that clinicians may need to closely monitor children and their parents for signs of emotional distress as disease duration increases in order to intervene early, especially if the family was initially unusually distressed.
Kovacs et al.100 also examined ‘non-compliance with medical treatment’ and demonstrated that one in two patients will become non-compliant to the point of endangering their health. Non-compliance or non-adherence emerged at an average of 3.5 years post-diagnosis and at an average age of 15 years, indicating that years three and four following the diagnosis of type 1 diabetes as well as the adolescent period may be particularly high-risk times for non-compliance. The authors suggest that the period of time between diagnosis and the onset of adherence problems may reflect a critical period of adaptation to diabetes, and that, because a low recovery rate was found with non-compliance, interventions to prevent its development are needed during the early period of adaptation.
Adherence to the treatment regimen was also a focus of the longitudinal studies of Jacobson, Hauser and colleagues 69,78,97 in which patients were followed from within the first 9 months of diagnosis. Jacobson et al.78 reported that, within this patient cohort of newly diagnosed children and adolescents, patients who were school aged at diagnosis (younger than 13 years) had better adherence over a four year follow-up period than did patients who were older (>12 years) at diagnosis. Similarly, Jacobson et al.97 found that initial child reports of self-esteem, social functioning and adjustment predicted subsequent adherence. Data from this longitudinal study revealed that ‘patterns of adherence established early in Year 1 are maintained over time’ (p. 523),78 although deterioration in adherence occurred as duration increased. In addition, they found that the strongest predictor of treatment adherence four years after diagnosis was the child-reported level of family conflict near the time of diagnosis.69
Data from this prospective study also indicate that, early in the course of the disease, youth with type 1 diabetes establish a pattern of glycemic level and regularity of medical appointment-keeping.104 Youth with the best glycemic control in the first four years of IDDM who also maintained regular medical follow-up had the lowest incidence of retinopathy outcomes 10–12 years after diagnosis. Assessments of family psychosocial variables, such as cohesiveness, conflict and expressiveness, taken near diagnosis, indicated that a more favorable family environment (i.e. more cohesive and less conflicted) was associated with less deterioration in glycemic control and fewer acute complications of diabetes, such as DKA and severe hypoglycemia.51–72 Based on such findings, family environment at the time of diagnosis and early clinic attendance and adherence should be considered when assessing a child’s risk for complications and need for services.
Grey et al.101 studied a cohort of 8–14-year-old children newly diagnosed with diabetes and a non-diabetic, peer comparison group. The researchers reported that children’s adjustment problems at diagnosis disappeared at one year post-diagnosis but reappeared at two years post-diagnosis, a pattern similar to that found by Kovacs et al.98,99,102,103 Grey et al. argued that, while previous studies have suggested that the period immediately after diagnosis is the most crucial, their data suggest that a second ‘critical period’ of adjustment occurs in the second year after diagnosis, and that intervention is important during the critical second year of life with diabetes for prevention of psychosocial deterioration.101
These longitudinal studies over the course of diabetes in children have revealed three important points for health care providers. First, a period of difficulty in adjusting to diabetes appears to occur at diagnosis and also during the second year. Second, treatment adherence patterns seem to be established in the early years, two to four years post-diagnosis. Third, family functioning and adjustment assessments may be important predictors of later adherence and diabetes control. The results of these studies indicate that interventions should be carried out after diagnosis before poor adherence patterns can be established. The logical point for multidisciplinary family-centered interventions, which will support adherence to the rigorous treatment regimen by children and families, is therefore in the early years post diagnosis. Similarly, a recent study comparing the adjustment experiences of parents of youngsters with type 1 diabetes with parents of children diagnosed with cancer reported that the timing of interventions is important early in the disease course, as well as later, when the school-aged child confronts new developmental challenges at adolescence.105
Several other important risk factors for poor diabetes control have been investigated in cross-sectional studies. Auslander and colleagues106,107 found that African-American youths are in significantly poorer glycemic control than Caucasian youths. Lower levels of adherence in African-American youths contributed to this difference, as did a higher prevalence of single-parent homes. However, both family structure and racial group were confounded with family socio-economic status. Single-parent families have been linked to poorer diabetes outcomes in several studies.106–108 In a study of correlates of illness severity at diagnosis, children from single-parent homes tended to have more severe symptoms of diabetes, such as DKA, than those living in two-parent families, suggesting that the stress of single parenting and insufficient resources or support may prevent some single parents from seeking medical attention earlier in the disease course.109 In a single-parent household, the entire burden of diabetes management falls on one parent, who may have less time to devote to the family due to the necessity to work. Financial resources are also typically more limited. Therefore, stress levels in such households may be higher than in two-parent homes. As discussed earlier, family stress has been correlated to glycemic control in several studies.68–74 Auslander et al.70 found that levels of family resources were also strongly related to glycemic control. Furthermore, lower socioeconomic levels have been implicated as a risk factor for poor glycemic control and recurrent hospitalizations.106,110 In light of the findings of these studies, it is crucial for health care providers to assess, at diagnosis and on an ongoing basis, the resources (financial, social and emotional) of the family of a child with diabetes. Although other minority groups need to be studied in relation to diabetes control, it seems reasonable to suggest that children from single-parent, low socio-economic status and/or minority homes be closely followed to assure early intervention if diabetes control deteriorates.
In the 21st century, it is possible to have a strong, optimistic viewpoint about the futures of children with type 1 diabetes. In the context of improvements in treatment technologies111 and treatment recommendations,1,2,65 we confront a future in which the acute and the chronic physical complications of type 1 diabetes for children can more readily be prevented. In addition, two decades of behavioral research with children with type 1 diabetes and their families have helped to make it possible to identify some of the ‘predictable crises’112 that occur as the child moves through the stages of normal growth and development and the phases of diabetes, as well as to identify critical family environment variables that support diabetes management and optimal glycemic control. We have been encouraged by these recent treatment and research advances, and therefore, in this chapter, we have attempted to identify the intersection between research focused on behavioral and family issues in children with diabetes and diabetes treatment, with the goal of illustrating the potential for prevention of certain behavioral and family ‘complications’ in childhood diabetes. Armed with a more comprehensive, developmental understanding of the impact of diabetes and its treatment on growing children and their parents, diabetes health care teams can work to prevent problems or to intervene before problems overwhelm families, and thereby improve the quality of life for children and families living with diabetes. Above all, health care providers must strive to provide a family-based model of care, recognizing the impact that diabetes has on all members of the family.
Within the current era of competition for health care resources, it becomes even more critical to ensure that the prevailing philosophy of ‘doing less’ does not move us backwards in the diabetes care of children and adolescents. Now, more than ever before, a multidisciplinary team is critical for the appropriate translation of advances such as the DCCT recommendations and for the prevention of problems — such as severe hypoglycemia in the preschool period or premature responsibility for diabetes management by older children — that have plagued previous cohorts of children and families. Now that we can offer hope for a healthy future to young patients, as health care providers and investigators, we must discover the energy and vision to create feasible health care systems to deliver this improved, more advanced and comprehensive treatment for type 1 diabetes to children and their families.
Next Week: Diabetes in Adolescents
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