David Levy, MD, FRCP
A controversial and fortunately uncommon disorder, described especially in the UK and USA, usually occurring in young women, with onset at puberty, and defined as a patient whose life is ‘constantly disrupted by episodes of hypo- or hyperglycemia, whatever their cause’ . Its characteristics are unstable glycemic control not responding to intensive management, recurrent hospital admissions (predominantly either hypoglycemia or DKA), high insulin requirements, overweight, long-term oligomenorrhoea/amenorrhoea, major psychiatric problems and severe family disruption. Eating disorders and gastroparesis add to the distressing and difficult mix . Variants are described in males, though much less frequently, and also in the elderly, where psychosocial factors are not nearly as conspicuous. Where implantable pumps have been used, insulin requirements appear to be unexceptional, and insulin manipulation is often suspected and documented. Severe microvascular complications, poor pregnancy outcomes and possibly an increased risk of death are associated with this most taxing and stressful clinical situation. Fortunately, the syndrome usually seems to remit by the early thirties. Intensive medical, educational and psychological support is required during the long interim period.
Quality of life in adolescence and young adults
Overall measures of quality of life are reduced in adolescents, though specific domains (e.g. formation of close personal relationships) show great variability. Girls, single-parent families and ethnic minorities have depressed quality-of-life measures (and worse HbA1c), and it has been suggested that targeting these groups with repeated quality-of-life questionnaires and subsequent discussion of the results may be helpful, though no change in HbA1c should be expected .
The intensive commitment required to participate in the DCCT (1993) was associated with lower quality of life, despite improved HbA1c levels, but studies in situations without such intensively enforced adherence have consistently shown an association between higher quality of life and better glycemic control and lower HbA1c, though the causal direction is not clear. In general, as expected, well-functioning family units, with high cohesion, good organization and an affective environment, are beneficial and, conversely, poorer psychosocial environments (e.g. single parenthood, lower income, ethnic minority status, family dysfunction) are associated with poor glycemic control and recurrent DKA (Box 13.2). In the 12 years after the onset of type 1 diabetes, young people (average age 21) were 20% more likely to have needed mental health referrals and not to have completed school than non-diabetic people. Mental health care usage was particularly high in the one-third no longer in specialist diabetes care, and not surprisingly glycemic control was worse. Returning these youngsters to diabetes care services is therefore very important, and primary care teams can play an important part in achieving this .
Within a few years of diagnosis, one in five adolescents is probably not attending a hospital clinic. These young people are often not engaging with their primary care team either; contributory factors include reluctance to discuss medical matters with professionals much older than they are, and organizational disorder associated with disrupted families and high divorce rates. Transition care from pediatric to adult clinics is often weak, and innovative approaches, for example employing a ‘health navigator’ in the team, very likely improve outcomes. However, much more is required, and recognition that the adult clinic is a relatively unfriendly place for a young person compared with the pediatric clinic could be a useful starting point for service redesign . The importance of psychological support during the transition phase is universally recognized, but few centres in the UK provide comprehensive services, despite good evidence that they lead to less stress, fewer symptoms and improved glycemic control.
Cognitive behavior therapy is the most commonly used intervention in young people and their families. Systematic review of this approach showed a modest effect on both glycemia (HbA1c improved by about 0.5%, 5 mmol/mol) and distress levels; nevertheless these are better outcomes than in adults. Motivational interviewing is relatively new, and seems promising; it is based on counseling that emphasizes facilitating behavioral change. Depression in young people is common, much more prevalent in females, and about two to three times more frequent than in the general population. It runs a more prolonged course, and is prone to recur.
Psychological problems in adults with type 1 diabetes
Relatively little has been written on psychological problems in adults with type 1 diabetes. Depression is common, but predates the onset of late complications. It may share some of the somatic features of poorly controlled diabetes (e.g. fatigue, daytime somnolence, weight loss and waking at night), but enquiring about affective symptoms (low mood, anhedonism, anxiety, shame and fear) should help make the distinction – these factors are more likely to be associated with depression. Patients with complications, for example visual failure, erectile dysfunction and cheiroarthropathy, are likely to be in a self-reinforcing cycle of poor self- care, impelled by depression. Relatively simple interventions may be of value, and have been demonstrated for improved blood pressure control in patients with successfully treated erectile dysfunction. Not surprisingly, once microvascular complications are established, the depression rate further increases twofold to threefold. Nearly one-third of a group of type 1 and 2 patients presenting with a first foot ulcer were considered to have major depression. In this same group, depression was associated with a threefold increased mortality over 18 months compared with those who were not depressed . This dramatic finding hints that there are problems beyond those of self-management, poor adherence and even serious events such as amputation, and changes in the hypothalamic– pituitary–adrenal axis, autonomic neuropathy (itself associated with increased mortality) and cytokine responses may be contributory or even causal. Other studies come to the same conclusion, that hyperglycemia and depression are linked in type 1 diabetes, but the mediator(s) of the interaction are factors other than poor diabetes self-care behaviors.
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