Type 1 diabetes and eating disorders (T1DE) – learning to ride the waves.
The daily demands of people living with type 1 diabetes to achieve good glycaemic targets are time consuming and require a great deal of effort. They are constantly asked to check glucose levels, carbohydrate (carb.) count every meal and snack, calculate the insulin dose and be mindful of what they eat and how much they exercise to keep their weight in check. This happens every single day soon after diagnosis. Unfortunately, no rest days can be permitted, or days which one is less mindful of all these factors and still be in safe glycaemic control. In a way, having type 1 diabetes can be considered disordered eating as it’s certainly not the norm to carb. count each meal. It doesn’t come as a surprise that having type 1 diabetes predisposes the person to an eating disorder. In fact, eating disorders are twice as common in people with type 1 diabetes than without.1
Who should be screened?
Type 1 diabetes and eating disorders (T1DE) – formerly known as ‘diabulimia’, refers to a behavioural change in a person living with type 1 diabetes to control their weight. These behaviours range from self-induced vomiting, use of laxatives, food restrictions and over-exercising. Despite no formal definition of T1DE, the proposed diagnostic criteria published by the royal college of psychiatrists includes presence of all three criteria:
1. Intense fear of weight gain, body image concern or fear of insulin-associated weight gain
2. Recurrent reduction or omission of insulin doses, or restriction of carbohydrate to prevent weight gain
3. Presenting with a degree of insulin restriction, eating or compensatory behaviours that cause at least one of the following:
• harm to health
• clinically significant diabetic distress
• impairment on daily functioning
It is important to think about the possibility of T1DE in any one of the following:
· Erratic glucose patterns, especially hyperglycaemia following a meal which may indicate insulin omission or dose reduction
· Witnessed purging or extreme dietary restrictions
· Multiple hospital admissions with DKA
· Recurrent evidence of ketonaemia
· Over-exercise
· Evidence of diabetes distress
· Presence of other mental health disorders
· Hypoglycaemia unawareness
· Disengagement from diabetes services
· Failure to request insulin prescriptions/infrequent insulin collection from local pharmacy
A useful and validated screening tool is the Diabetes Eating Problem Survey – Revised (DEPS-R). This screening tool that has been designed to screen adolescents and adults with type 1 diabetes who may have an eating disorder. It asks questions about eating habits, diabetes control, insulin misuse, and other compensatory behaviours, with a score ranging from 0 to 80. This is a screening tool, not a diagnostic tool, and a score of more than 20 can help facilitate further evaluation or referral to specialists.
Multidisciplinary team
Whilst living with type 1 diabetes can contribute to a number of mental health issues, there are few circumstances which combine both medical and psychiatric teams in a cohesive multidisciplinary team. There is a clear benefit and good evidence for a multidisciplinary team approach rather than an individualistic approach as it is unlikely to meet both eating disorder and diabetes demands. A few years back NHS England funded a 1-year pilot project integrating both diabetes and eating disorders teams as a multidisciplinary team which set up the ComPASSION project.2
ComPassion project: what have we learned?
In ComPASSION, the Care Programme Approach (CPA) was used to manage both physical and mental health needs, with a nominated Care Coordinator. The psychological interventions were draw upon evidence-based approaches for eating disorders and psychological difficulties associated with living with diabetes. Key components of psychological interventions include understanding the interplay between the eating disorder and diabetes, psychoeducation, enhancing self-efficacy, cognitive restructuring, mood regulation, and developing compassion and acceptance. Family involvement and peer support are recognized as important in supporting recovery. Insulin management and nutrition strategies are personalized and gradually implemented, taking into account the risks associated with refeeding and the person's pace of change.
Key Learnings from ComPASSION project:
HbA1c and BMI alone are not consistently useful for diagnosing T1DE. HbA1c levels were preserved in patients showing restrictive diets but appropriate insulin administration whilst an elevated HbA1c was present if insulin dosing was restricted or omitted.
Building a trusting and respectful therapeutic relationship is crucial for engagement of individuals to the programme.
Psychological treatments for diabetes and eating disorders should not be separated; a joint formulation capturing the interplay between the two conditions is important.
Starvation and high blood glucose levels can impact cognitive functioning including concentration during sessions and overall engagement in the programme, and this required adaptations in treatment approaches such as the use of repetition, summarising and written plans.
Healthcare teams need to have a firm knowledge of both diabetes and eating disorders to provide effective care, especially since people living with type 1 diabetes become highly proficient in self-management. A lack of knowledge of both fields may cause the patient to be less engaged in the sessions. Specialist educational opportunities are therefore needed for healthcare professionals across various settings to help support people with T1DE.
People living with T1DE require a multidisciplinary approach, personalized care, and continuous support to overcome the complex relationship between diabetes and eating disorder. The most difficult part is identifying people with T1DE and screening should be sought at all possible opportunity, including outpatient and acute inpatient setting.
Written by Dr Alison Galea
