Dr Vicki Dunbar, Clinical Psychologist NHS Tayside Service for Diabetes in the Young NHS Tayside CAMHS North of Scotland Young People’s Inpatient Unit Clinical Psychologist CAMHS ED CAMHS Inpatient YPU Paediatric Diabetes Psychologist Type 1 diabetes Disclaimer: On maternity leave! Introduction Examine some of the complexities of assessing and treating eating disorders in young people with type 1 diabetes Looking at case studies from clinical experience Think about some practical resources and information to take back to clinical practice Questions! Type 1, Type 2 diabetes are just different levels of severity of diabetes (Type 1 is most severe) T1D is caused by eating sugary foods and a unhealthy diet Type 1 diabetes (T1D) is treated using insulin injections and frequent blood testing You can grow out of T1D Having T1D doesn’t stop you from doing anything you want in life If you were diagnosed when you were younger, you’ll be used to it and it wont affect you as much psychologically. T1D is a hidden disability HbA1c is a measure of blood sugar levels in real time. Caused by a number of factors, genetics, viral hypothesis (and a few more theories emerging). Is an autoimmune disease Co-morbidity to coeliac, rheumatoid arthritis, hashimotos thyroiditis (watch for differential diagnosis) Can be diagnosed within 3 peaks (toddler, 9-12, 15-17). Often weight loss is a key component Body needs fuel, insulin acts as a key to let sugar into the cells. Without insulin, body doesn’t get energy and can go into ‘DKA’ which can be fatal. If body cant get store energy, weight loss can occur. Needs daily insulin replacement by injection or pump, matched to energy output (exercise) and energy input (food) as well as hormonal fluctuations, stress, illness etc. Intensive focus on food, eating and exercise as part of treatment. Weight often a focus at clinic appointments. Insulin doesn’t put weight on per se, but more insulin means more food required to balance sugar levels. Often you see weight gain after diagnosis and effective treatment has been established. Hypos must be treated with high sugar foods to raise sugars levels rapidly. Hypos are “scary – why would you want to have one?”. Requires regular physical monitoring from MDT. Young people with T1D are twice as likely to develop an eating disorder than a person without diabetes (Rodin et al., 2002). Sub-threshold eating disorders also twice as likely (Rodin et al., 2002). Focus on weight and food Co-morbid psychological difficulties much more likely, dealing with chronic illness (Depression, anxiety in particular) ‘easy’ way to lose weight – to stop/ reduce insulin.... Presence of INSULIN OMMISSION found to be up to 39% for weight control (Rydall et al., 1997) Usual risk of low weight e.g. osteo/fertility etc. Risk of retinopathy Neuropathy Macropathy Renal failure Death (Diabetic Ketoacidosis; See Rodin et al., 2002 for review) ◦ Higher HbA1c found in those with ED (Rodin et al., 2002) and therefore risks of these complications. T1D is most common chronic condition of childhood and adolescence (0.3-0.6% by the age of 20; Karvonen et al., 2000) Mortality AN 0% – 15% depending on follow up period Crude mortality: 5% AN, 3.9% BN, 5.2% EDNOS (Steinhausen et al., 2002) In type 1 diabetes physical risks are far higher and therefore risk of death is also much higher. Despite this staggering figure research has shown that adequate treatment can prevent severe vision loss in 90% of cases of diabetic retinopathy Diabetic Retinopathy Costs: Mean Average: £381,896.83 (70 PCTs) Median: £96,657 Diabetic Neuropathy Costs: Mean Average: £247,964.67 (60 PCTs) Median: £28,385 Binge / Purge types most prevalent in T1D NICE CG15: 1.4.3.1Diabetes care teams should be aware that children and young people with type 1 diabetes, in particular young women, have an increased risk of eating disorders. 1.4.3.2Diabetes care teams should be aware that children and young people with type 1 diabetes who have eating disorders may have associated problems of persistent hyperglycaemia, recurrent hypoglycaemia and/or symptoms associated with gastric paresis. 1.4.3.3Children and young people with type 1 diabetes in whom eating disorders are identified by their diabetes care team should be offered joint management involving their diabetes care team and child mental health professionals. NICE CG9: 1.1.4.2 Treatment of both subthreshold and clinical cases of an eating disorder in people with diabetes is essential because of the greatly increased physical risk in this group. 1.1.4.3. People with type 1 diabetes and an eating disorder should have intensive regular physical monitoring because they are at high risk of retinopathy and other complications. Very useful to monitor physical health – used routinely at each appointment with addition info such as HbA1c, Ketones, hypos, insulin use. Common language for mental health and paediatrics. Use proforma sheets to fill in each week and see progress/ deterioration. Weight loss Disordered eating weight temp Mental state pulse Activity exercise Risk Purging BP Self harm suicide Squat test Hydration Status Diabetics with Eating Disorders (Janet Treasure) DWED – updates to NICE 2017 http://www.dwed.org.uk/ A person with type 1 diabetes who has an eating disorder, particularly insulin omission, cannot be dealt with in isolation by an eating disorder team. What DWED has observed to be effective is the patients’ DSNs being proactive in collaborating with both the individuals and their eating disorder teams to guide and educate them as to how diabetes can be managed whilst the eating disorder is being treated. A multidisciplinary approach is the only effective way to treat a person with type 1 diabetes and an eating disorder. “It doesn’t matter if a type 1 who omits insulin is 15 stone or 7 stone in DKA the risk is the same and somebody somewhere has to start protecting us regardless of out weight.” Allan & Nash (2015) DSM Insulin omission may be viewed as a form of purging within the bulimia framework. In its most recent incarnation, the DSM V (May 2013) Insulin omission is included as a clinical feature of both Anorexia and Bulimia, in the clinical features of Anorexia the following is written ‘Individuals with anorexia nervosa may misuse medications, such as by manipulating dosage, in order to achieve weight loss or avoid weight gain. Individuals with diabetes mellitus may omit or reduce insulin doses in order to minimize carbohydrate metabolism’ (p376) https://www.diabeteswa.com.au Recurrent episodes of DKA/ Hyperglycaemia Recurrent episodes of Hypoglycaemia High HbA1c Frequent hospitalisations for poor blood sugar control Delay in puberty or sexual maturation or irregular menses / amenorrhea Frequent trips to the Toilet Frequent episodes of thrush/ urine infections Nausea and Stomach Cramps Loss of appetite/ Eating More and Losing Weight Drinking an abnormal amount of fluids Hair loss Delayed Healing from infections/ bruises. Easy Bruising Dehydration – Dry Skin Dental Problems Blurred Vision Severe Fluctuations in weight/ Severe weight loss/Rapid weight Gain/Anorexic BMI Fractures/ Bone Weakness Anaemia and other deficiencies Early onset of Diabetic Complications particularly neuropathy, retinopathy, gastroperisis & nephropathy Co – occurrence of depression, anxiety or other psychological disturbance i.e. Borderline Personality Disorder. Anxiety/ distress over being weighed at appointments Frequent Requests to switch meal plans Fear of hypoglycaemia Fear of injecting/ Extreme distress at injecting Continually requesting new meters (for the b.s. Solution) Injecting in private Insisting on having injected out of view Avoidance of Diabetes Related Health Appointments Lack of BS testing /Reluctance to test Over/ under - treating Hypoglycaemic episodes A fundamental belief that insulin makes you fat Assigning moral qualities to food (i.e. good for sugars/ bad for sugars) An encyclopaedic knowledge of the carbohydrate content of foods Persistent requests for weight loss medications If T1 is concurrent with hypothyroidism – abuse of levothyroxine Goebel-Fabbri et al., 2009. Outpatient management of eating disorders in Type 1 diabetes. Diabetes Spectrum, 22(3). Marathon not a sprint • Diagnosis important for prognosis • Important to “break bad news well” - families need to be aware of the potential struggles ahead and to find their own support. Steinhausen (1995) found that 43% of non diabetic people recover completely, 36% improve, 20% develop a chronic eating disorder and 5% die from anorexia nervosa. Young person Family Peers Diabetes Team / Paediatrics CAMHS Team Possibly Inpatient CAMHS 15 years old Pakistani cultural background High pressure academically Type 1 diabetes since 12 years old Presenting with extremely high HBa1C, diabetes team put immense amount of support with no changes Weight initially 102% WFH DKA admissions Weight rollercoaster Sub-clinical Referral to Diabetes Psychologist/ CAMHS ASSESSMENT: ◦ Clues to distorted body image ◦ Clues to purging behaviours ◦ Motivational stage to changing diabetes related behaviours... Fears ◦ Diabetes behaviours – looked as if doing injection, but actually squirting insulin to the side. TREATMENT ◦ ◦ ◦ ◦ Ideas, what might you think about in terms of treatment? What to consider? How to involve family (especially with insulin) What might implications be to your service for a patient such as Rashida? – Would they be accepted to CAMHS? Would they meet threshold? Who would see them? ◦ How might you overcome or would you change your practice given what you know now? 15 years old Previous contact with Psychologist 2007 with anxiety symptoms (slightly obsessive compulsive in nature). Responded well to CBT approach. Re-referred as urgent due to emergency admission to Paeds ward; dizzy, weak. Rapid deterioration in eating over last 6 months, notable increase in HbA1C >13% (>120 mmol/mol). Restriction in food intake, initially down to 1200 KCals, then rapidly to nothing. Slow eater, separating foods on plate. Drinking diet coke excessively, hiding food in bathroom, hoarding food in room, weighing self in room. Aggressive if challenged to eat. No longer CHO counting. ? Restricting insulin. Refusing to take snack if hypo. 76% WFH HbA1c had risen significantly over last 6 months (>85mmol/l). Rapid loss of weight (also noticeable in lanugo hair, emaciated appearance) Immediate (that day) MDT approach taken – diabetes team, nursing, dietitian and psychology initially and then psychiatry. Investigations and full physical assessment following Junior MARSIPAN guidelines (2012) Low threshold for coeliac screening Reduction of risk of re-feeding syndrome Intensive psychological and physical monitoring Followed family based model (FBT-type) Weekly meetings between paediatric and CAMHS team members. Full MH assessment to examine co-morbidities and subsequent treatment Seen on weekly basis initially. Overall 35 appointments with Psychology (>10 joint with colleagues).1-2 hours each session Co-morbid diagnosis of OCD – well treated with Sertraline 100mgs od Psychological and Family interventions with regular physical monitoring. Re-coaching of CHO counting and insulin reviews. Last weight was 61kg, BMI 19.8, 97% WFH which had remained stable for some months HbA1c 10% (86 mmol/mol) but not due to insulin purposeful omission, rather due to lack of testing He left to go to Oxford University to study Maths recent updates say he is doing very well! I’d like to acknowledge the support of the Tayside Diabetes Service in the Young and NHS Tayside CAMHS Eating Disorders Team. Any questions please email: vicki.dunbar@nhs.net