The groundwork for understanding stages of the disease course in diabetes has been laid by three major longitudinal investigations which 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 diabetes49'58'70 - 73. The third investigation, by Grey and colleagues74 studied a newly diagnosed cohort of children carefully over their first 2 years of living with diabetes.
The longitudinal study by Kovacs et al.71-72 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 resolved75'76. However, results from yearly evaluations indicated that as IDDM duration increased, patients' emotional distress about diabetes management again increased. Children rated the management regimen as more difficult the longer they had diabetes71. This result contrasted with the finding that mothers of these children found it easier to cope with IDDM as duration increased72. 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)71. 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 distress71'72. 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 amily was initially unusually distressed.
Kovacs et al.73 also examined 'non-compliance with medical treatment' and demonstrated that 50% of 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 l5 years, indicating that years 3 and 4 following the diagnosis of IDDM, 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 of IDDM, 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 colleagues49'58'70, in which patients were followed from within the first 9 months of diagnosis. Jacobson et al.58 reported that within this patient cohort of newly-diagnosed children and adolescents, patients who were school-age at diagnosis (<13 years) had better adherence over a 4 year follow-up period than did patients who were older (>12 years) at diagnosis. Similarly, Jacobson et al.70 found that initial child reports of self-esteem and 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)58, although deterioration in adherence occurred as duration increased. In addition, they found that the strongest predictor of treatment adherence 4 years after diagnosis was the child-reported level of family conflict near the time of diagnosis49.
Data from this prospective study also indicate that early in the course of the disease, youths with IDDM establish a pattern of glycaemic level and regularity of medical appointment-keeping77. Youths with the best glycaemic control in the first 4 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 favourable family environment (i.e. more cohesive and less conflicted) was associated with less deterioration in glycaemic control and fewer acute complications of diabetes, such as DKA and severe hypoglycaemia37'52. 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.74 studied a cohort of 8-l4 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 1 year post-diagnosis but reappeared at 2 years post-diagnosis, a pattern similar to that found by Kovacs et al.71'72'75'76. 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 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 deterioration74.
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. Secondly, treatment adherence patterns seem to be established in the early years, 2-4 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 and before poor adherence patterns can be established. The logical point for multidisciplinary family-centred interventions, which will support adherence to the rigorous treatment regimen by children and families, is, therefore, in the early years post-diagnosis.
Several other important risk factors for poor diabetes control have been investigated in cross-sectional studies. Auslander and colleagues78'79 found that African-American youths are in significantly poorer glycaemic 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. Single-parent families have been linked to poorer diabetes outcomes in several studies78 - 80. 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 onset81. In a single-parent household, the entire burden of diabetes management falls on one parent, who may have less time to devote to his/her 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 glycaemic control in several studies48-54. Auslander et al.50 found that levels of family resources were also strongly related to glycaemic control. Furthermore, lower socio-economic levels have been implicated as a risk factor for poor glycaemic control and recurrent hospitalizations78'82. 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.
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