Type 1 diabetes mellitus (T1DM) is one of the most common chronic, unremitting medical conditions that develops in childhood or adolescence.1 There is a bimodal age of onset, with the first peak at 4 to 6 years and the second peak in early adolescence.2
Children with T1DM are at increased risk for other autoimmune diseases, such as celiac disease, autoimmune thyroid disease, and adrenal insufficiency. First-degree relatives of those with TIDM are at increased risk for this disease. For those afflicted with celiac disease, dietary modifications necessitate a gluten-free diet in addition to the recommended restrictions for simple sugars and the need to avoid grazing. Needless to say, for the child or teen with both T1DM and celiac disease, the dietary modifications can significantly affect the quality of their lives (eg, no pizza with friends, no cake and ice cream at birthday parties, and no on-the-go diet favored by teens).
Poorly controlled T1DM can lead to potentially life-threatening short- and long-term conditions that range from subtle neurocognitive changes to organ-destroying macrovascular and microvascular damage (Table 1).3 The age at onset of the illness has implications for complications that can arise from hypoglycemia (tremor, confusion, seizures) and hyperglycemia (nocturia, ketoacidosis, coma, microvascular changes). Neurocognitive changes from hypoglycemic or hyperglycemic episodes can be both acute and chronic (Table 2).4-6
The preschool-age child is more prone to hypoglycemic episodes that may lead to problems with spatial memory deficits, compromised cognitive function, and lower gray matter volume in the left superior temporal region. Fortunately, treatment for T1DM has advanced greatly over the past 10 years, and medications such as insulin detemir have greatly reduced the risk of severe nocturnal hypoglycemia.7 With the increased risk of hypoglycemic episodes for the preschool-age child with T1DM, the struggle with care and dietary control as the child transitions into school may occur. Determining what is behavioral and what is a short-term complication can be a challenge.
T1DM was diagnosed when Timmy was 3½ years old. He had a severe episode of hypoglycemia when he was 4, and his parents were instructed to “let his sugars run a little high.” As he was getting older, he was able to clearly tell his parents when his sugar was low, and more strict control was instituted. In first grade, with less supervision in the cafeteria, Timmy learned to sneak favorite higher-sugar foods, which resulted in more aggressive behavior, difficulty in sitting still, and acting more “wild.” His parents reported difficulties with adhering to dietary recommendations and with his tendency to “get wild” when he couldn’t get away with unapproved foods or behaviors. Despite this, his glucose monitoring results were in accordance with treatment guidelines. His parents and school worked with a pediatric psychologist to establish a positive behavioral system that resolved Timmy’s behavior problems.
Older children and adolescents are less vulnerable to nocturnal hypoglycemia and to neurocognitive changes. The consequences of longer-term poorly controlled diabetes, as evidenced by elevated hemoglobin A1c levels associated with microvascular changes, such as renal failure, retinopathy, and neuropathies, usually do not present until early adulthood.
What is already known about psychiatric issues in children and adolescents with diabetes?
■ The impact of chronic illnesses for children and adolescents and their family functioning has been well described since the 1970s, and studies of psychiatric comorbidity have been reported since the 1980s.
What new information does this article provide?
■ Treatment for type 1 diabetes mellitus (T1DM) has progressed remarkably over the past 10 years with insulin pumps and continuous glucose monitoring, yet challenges remain for affected youths and their families. This article summarizes recent findings on neuropsychological effects of short- and long-term consequences of hypoglycemia and hyperglycemia, use of evidence-based family treatments for families struggling with T1DM, and the impact of psychiatric comorbidity on outcomes for the patient with T1DM and family members.
What are the implications for psychiatric practice?
■ For the psychiatrist treating a child or family member with T1DM, assessing the functioning of the family and the patient for psychiatric comorbidity is vital. Teasing out behavioral challenges from the disease necessitates close contact with the medical care providers. Evidence-based treatments, such as multisystemic treatment, cognitive-behavioral therapy, psychoeducation, and prudent psychopharmacology, are tools for the psychiatric provider.
Family and developmental issues
The diagnosis of T1DM can be devastating to both the child and family. Family functioning is stressed by the treatment regimen that may be uncomfortable and painful and out of alliance with the normal tasks of development. Because of the potential for immediate life-threatening complications of poorly controlled diabetes, family members must readjust their approach to daily living.
At the time of diagnosis, parents and older children are faced with the daunting task of learning a great deal of information rapidly and the need to shift priorities to include glucose monitoring and insulin administration. Because of dietary restrictions, meal structure and appropriate food choices also become more difficult. Children with T1DM are expected to follow up with the diabetes care team at least every 3 months and sometimes more often if they or family members cannot maintain tight glycemic control.
The impact at the time of diagnosis on the family is often one of shock followed by acceptance. Some parents may experience varying levels of anxiety and depression weeks to months after the diagnosis.8
The impact of family functioning on childhood T1DM was described by Minuchin and colleagues9,10 in the 1970s. They described families with a diabetic child as vulnerable to 4 maladaptive transactional patterns: enmeshment, overprotectiveness, rigidity, and lack of conflict resolution. In addition, Minuchin’s group reported that stressful family interactions could lead to immediate elevations in the patient’s blood glucose levels.
Since the 1970s, research on T1DM has focused on factors related to treatment adherence, family cohesion, marital issues, parental psychopathology, and family treatment approaches to enhance wellness. In 2007, Lewandowski and Drotar11 observed that 22% of mothers of adolescents with T1DM suffered from clinical levels of depression. Their findings showed that there was less maternal depression, less conflict with the adolescent, and better degrees of adherence to treatment in families with greater levels of spousal support.
Family factors that are associated with poorer treatment adherence, poorer metabolic control, and worse health outcomes include high levels of conflict and low cohesion.12,13 Interventions have focused on family communication and cohesiveness and include multisystemic treatment and educational approaches (parent-adolescent teamwork).14-16 Positive benefits were seen in the reduction of family conflict, and there was some improvement in glycemic control in patients who had these interventions.
The treatment plan for the adolescent must include continuous education. Responsibility for self-care increases with age as the child’s cognitive capacity increases and he or she can follow dietary guidelines, monitor blood glucose levels, and make insulin adjustments. What may appear to be acting out and poor glycemic control may actually reflect inadequate education and preparation for the adolescent to assume control of the treatment parameters of the illness. The hormonal shifts that come with puberty can cause out-of-control blood glucose levels that require closer monitoring, more frequent insulin injections, and more frequent contact with treatment providers—all of this at a time when the adolescent seeks more autonomy and dislikes scrutiny.
A further challenge is understanding the importance of glycemic control on long-term outcomes. Health care providers and parents know that tighter controls will lead to long-term health benefits, while the adolescent often feels invulnerable. Recognizing that adolescence can be a developmentally challenging period, in 2008 the International Society for Pediatric and Adolescent Diabetes published the clinical practice consensus guidelines.17
The prevalence of psychiatric disorders—both internalizing and externalizing—in adolescents and young adults with T1DM may be 2 to 3 times higher than that found in the general population.18,19 Given this increased risk of psychiatric disorders and the negative impact of psychiatric disorders on treatment adherence, screening for mentzal health conditions is the standard in many diabetes clinics throughout the country.
Common reactions at the time of diagnosis include anxiety, sadness, withdrawal, and increased dependency. Approximately 30% of children with new-onset T1DM have a clinically significant adjustment disorder.20 The diagnosis of an adjustment disorder may preclude a later diagnosis of an anxiety disorder or depression. The diagnosis of depression may be difficult to make because there may be an overlap between depression and diabetes symptoms, such as fatigue, weight loss, concentration issues, and memory challenges.
In conjunction with the increase in depression, there is a 10-fold increase in the incidence of suicide and suicidal ideation for adolescents with T1DM.21 Suicidal ideation in an adolescent with T1DM is coupled with his or her ready access to lethal means through insulin overdose; thus, close monitoring and readily available mental health support are mandatory.
Anxiety disorders also may be more common in children and adolescents with T1DM than in the general population. Anxiety symptoms may be similar to those of hypoglycemia (eg, tremulousness, palpitations, fearfulness). Some programs stimulate a monitored hypoglycemic episode to ensure that the patient with newly diagnosed T1MD and his family can recognize the symptoms of a hypoglycemic episode. Anxiety disorders such as needle phobias can make necessary treatment difficult and may require desensitization programs.
In addition, eating disorders have been found to be more common in patients with diabetes mellitus than in healthy controls.3 Disordered eating and misuse of insulin are, unfortunately, relatively common—adolescent girls and young women may intentionally discontinue insulin or reduce the dosage to lose weight. In addition, reducing the insulin dosage has been used as a strategy to counterbalance the effects of binge eating. This “purging” leads to chronically elevated hemoglobin A1c levels with a 3-fold increased risk of diabetic retinopathy.22
Tammy was 8 years old when T1DM was diagnosed. She was always an honors student, and her mother (a single, working parent) relied on Tammy to take responsibility for her diabetes self-care from age 10. The greatest loss to Tammy after diagnosis was ready access to candy. After her diagnosis, nocturnal enuresis developed; she did not want to attend sleepovers because she was fearful of peer ridicule. As she entered puberty, she noted her sugar levels began running higher and that she was gaining weight. She discovered that by lowering her insulin dose she could rapidly lose weight. Coinciding with her misuse of insulin, her grades went down and she risked failing the eighth grade. Tammy had 2 hospitalizations for diabetic ketoacidosis at age 13, and subsequent referral to a child psychiatrist revealed the presence of a binge-purge eating disorder, depression, and suicidality.
Treatment of mental health conditions may lead to improved dietary and exercise habits and subsequent changes in insulin requirements. Needle-related fears have been successfully treated with distraction, cognitive-behavioral techniques, and hypnosis.23 Dialectical behavioral therapy may play a role in the treatment of the adolescent with difficulties in self-management, distress tolerance, and suicidality.
The medical impact of diabetes needs to be considered when addressing the symptoms specific to the psychiatric illness.24 The judicious use of psychopharmacological agents (after consultation with the diabetologist) includes consideration of the effects of the drug on glucose metabolism. The effects of medications can include appetite suppression and potentially enhanced insulin effects (some SSRIs), appetite enhancement (tricyclic antidepressants, atypical antipsychotics), and glucagon stimulation (lithium carbonate).25
Dilemmas and pitfalls
T1DM is a chronic, life-long illness with immediate consequences for hypoglycemia and hyperglycemia and with the potential of end-organ failure in adulthood. Often the adults in the lives of children with T1DM feel the sense of urgency for diabetic control, while the child or teen has a sense of immortality and a lack of foresight. Health care providers, teachers, school nurses, school cafeteria workers, school bus drivers, parents, friends, and friends’ parents may all be in the position of monitoring the welfare of the child with diabetes at times when separation and individuation are key developmental tasks.
Even the patient and family who are highly motivated to adhere to treatment struggle with never being able to take a day off from the illness and require external supports. Although treatment modalities have changed over the past 10 years with insulin pumps, easier injections, and basal boluses that increase flexibility, the young patient still has significant distress and turmoil that affect functioning in all domains. As health care evolves to accountable care organizations and patient-centered medical home models, the mental health provider will likely have a greater role in treating children and families with chronic health conditions such as T1DM.