Diabetes and Eating Disorders in paediatrics and adults

Transcription

1 Diabetes and Eating Disorders in paediatrics and adults (December 2013 review date 2016) Authors Candice Ward - Principal Diabetes Dietitian / Lead DAFNE & Pump Educator, Cambridge University Hospitals NHS Foundation Trust Elaine Jennings Clinical Lead Dietitian Specialist diabetes services/mental Health Specialist dietitian, Betsi Cadwaladr University Health Board Mary McDermott Advanced Eating Disorder Dietitian, Suffolk Mental Health Trust Type 1 Diabetes As early as 1980, the first papers, specifically describing cases of eating disorders (ED) amongst young women with type 1 diabetes, were being published in medical journals ( Fairburn et al, Gomez et al, Garner et al). DSM V was published in 2013, but the intentional misuse of insulin to prevent weight gain/promote weight loss was not added as a specific diagnosis. "Laxatives, diuretics, enemas, and other medications" remained as the compensatory behaviours to prevent weight gain in diagnosis of bulimia nervosa (BN), and also Other Specified Feeding or Eating Disorders (OSFED), when not accompanied by binge eating. The intent behind misusing insulin will be mentioned throughout this chapter as the authors believe that it is essential to understand how it may change the diagnosis. Insulin misuse is considered to be restricting or avoiding insulin for the sole purpose of weight loss or, use of an unnecessarily large amount of insulin in order to avoid high blood sugars following an episode of bingeing. Of significant interest, Fairburn, 1991 and Peveler, 2005 concluded that insulin misuse for the purpose of weight control is not confined to subjects who fulfil the diagnostic criteria for a clinical eating disorder. This information will prove essential when considering the design of future services, how treatment is offered and by whom. The popular media and web terminology of diabulimia has not been included in DSM V, although the term does appear in some textbooks on Diabetes, Shaw, An individual case of what is now commonly referred to as Diabulimia was discussed by Hudson et al 1983, (ref 54) 1. Prevalence The prevalence of the co-morbidity of diabetes and an eating disorder is very difficult to define. Davison, 2003, summarises limitations across many studies examining prevalence of eating disorders in diabetes, including sample bias from specialist diabetes centres, heterogeneous data collection (self-reported to diagnostic interviews), modification of validated scales, to account for diabetes related behaviour (e.g. attending to their diets and bodies), produced reduced sensitivity, but overall subclinical and BN occur more freq in T1. Also, over the past 30 years the DSM criteria have been revised, leading to inconsistencies in data. 1

2 The compounding factor that exists when trying to assess the prevalence is that over the last thirty years, diagnostic criteria for Anorexia Nervosa (AN)and BN have been revised (DSM III and DSM IV) and even within the revision of the criteria, no specific guidance has been given as to where insulin misuse fits as a diagnosis. In the studies that have been reviewed, insulin misuse has been considered as BN, EDNOS (DSM III and IV) and BED. Therefore separating out absolute data is unreliable but there is a good indication of the prevalence. What does appear to be a consistent finding between the studies, is that Anorexia Nervosa is rare in Type1 DM. Some studies having identified no cases (Jones et al 2000; Fairburn, 1991; Smith, 2008, Colton 2004, Brydon 1999) and other studies reporting findings of a significantly low rate of AN (Herpetz study 1999; Mannucci, 2005). A study that has been considered one of the definitive trials (Jones et al 2000) reported that the prevalence of an ED was 2.4 times higher in the diabetes population of adolescent females, than in age matched non-dm controls. EDNOS was reported as the most common diagnosis, but insulin misuse was included in this. This increase in prevalence of ED s in the diabetes population was borne out by other authors, (Herpetz, 1999, Smith, 2008, Steel, 1987, Jones, 2000, Takki, 2008 and Bryden, 1999,) with the predominant diagnosis being BN and EDNOS. Brydon, 1999, found EDNOS the only diagnosable ED in Type 1 adolescent over eight year follows up. Herpetz 2001, found that eating disorders in both T1 and T2 tended to persist over time, with considerable shift between different types, clinical to subclinical and vice versa. Sub-threshold eating difficulties Disturbed eating behaviour (DEB) is relatively easy to identify but more complex to define. It is important in this context to understand what is meant by the phrase, as varying behaviours will be considered disturbed. Disturbed eating behaviour is described by Colton, 2007 as dieting for weight control, binge eating and purging behaviour, but not in a form so severe as to constitute full-syndrome behaviour. Both Bryden,1999 and Hyman Young, 2010 commented that the pathophysiology (hormonal alterations, insulin resistance in adolescence) and/or treatment of diabetes which may affect eating behaviour, needs to be addressed in any study, as these may be clinically relevant and will affect the accuracy of a study. Hyman Young, 2010 also commented that most studies on DEB in the diabetes population did not have weight matched controls, where weight is a strong predictor of ED and DEB. Peveler, 1997 found no difference in behaviours characteristic of an ED compared to controls, although Peveler et al, 2005, suggested that clinically important disturbances of eating habits and attitudes were present at some point in 25% young females with T1. He suggested that the prognosis for these females is poor and noted that the cumulative incidences of eating problems continue to increase after young adulthood and are markedly higher than earlier cross-sectional studies tend to suggest, Colton 2007& Rydell 1997 found DEB highly persistent over time in girls with Type 1. 2

3 Wing, 1986 reported less self-reported eating pathology than in the non-diabetic peer group, but warned of the selective over-reporting of dietary adherence, and under-reporting of eating pathology, in young diabetes population. Significant percentages of DEB in adolescent and young adults were reported in other studies (Colton 2007 and 2004, Jones et al 2000, Peveler et al 2005, Olmstead 2008, and Rydall 1997). Jones 2000 reported 1.9 times higher incidence of sub-clinical eating disorders compared to control. MALES In the diabetes population, as with the non-diabetic population, disordered eating occurs more frequently in females than in males (Neumark-Sztainer, 2002). However, when comparing the diabetes male population with the non-diabetes male population, Neumark-Sztainer (1995) found that males with diabetes were twice as likely to report concerns with body development and are more likely to report vomiting for weight control and dieting than the controls. In Fairburn s study (1991) no males with diabetes were diagnosed with an eating disorder or insulin omission for weight loss. INSULIN OMISSION Insulin omission is a unique method of weight control which is available only to the population who have diabetes. The physical short and long term risks of this method are of exceptional concern and this patient group is generally recognised as the most difficult and risky in their presentation of DM and ED. All of the studies reviewed reported a significantly high incidence of intentional insulin omission or under-dosing, which increased over time (Rydall 1997). The behaviour was reported as a weight control method in 11-37% Type 1 female and is not confined to those with a clinical diagnosis of and eating disorder (Bryden 1999, Jones 2000, Rydall 1997, Fairburn 1991, peveler 2005,). However, intentional insulin omission in 50% of people with Type 1 and Type 2 diabetes was also attributed to interference with daily life, injection pain and embarrassment (Peyrot 2010). Polonsky 1994, found that of the 31% of females across all age ranges, half omitted insulin due to fear of hypoglycaemia, general distress and/or diabetes-specific distress, but omission was more frequent in those concerned with weight control. In clinical practice, the intention of insulin omission is important to elucidate, Khalida, Aetiology The aetiology of DM together with clinical ED may be complex. The development of these two chronic conditions as co-morbid partners, presents a very challenging presentation for any clinician and both illnesses need to be fully understood before a treatment package is designed. 3

4 Powers (2012) found in 93.8% cases, T1 DM preceded the diagnosis of an ED - on average by 10.2 years. In the small number of cases where the ED developed first, it was more likely to be Anorexia Nervosa rather than BN or EDNOS. This backed up the finding of Marcus & Wing (1990) that T1 DM precedes and ED in 90% cases. Takki (2011) found that when T1 DM developed in preadolescence and adolescence, it seemed to increase the subsequent risk of developing an ED compared to either a younger age onset or adult onset. The author suggested the reason for this was a poorer sense of overall personal control while managing T1 at the same time as puberty, as highlighted by Schwartz (2002). Whilst it is generally understood and accepted that an ED develops as a result of a life trigger or trauma, Ward (1995) reported that childhood trauma in T1 and ED was of lower incidence than in ED without DM. This suggests that the diabetes itself triggers the vulnerability and Ward describes interesting cases where ED s in T1 have developed well into adulthood. Steel (1987) found that if a young person with T1 had poor control of diabetes, they were more at risk of developing an ED in time, rather than the popular thinking that the ED is responsible for the poor control. From the psychological aspect, Maharaj (2001) suggests that eating problems in adolescent girls with T1 are associated with an increased risk of emotional difficulties in the mother-daughter relationship, thus interfering with the ability of the teenager to become an individual. Other studies reflect on the physical and emotional difficulties that present with T1 diabetes in young females. Investigations of Body Image have found that diabetes broadens the areas of body dissatisfaction. Needle marks or lumps (lipohypertrophy) on the skin have been reported as increasing body awareness and causing feelings of betrayal and damage to the body. (Davidson, 2003). In the non diabetes young female population, it is well recognised that aetiological factors such as environmental, cultural and genetics can play a part in the onset of an ED. For these same females, once T1 DM has been diagnosed, there are further factors, which are specific to diabetes and will increase the risk of developing an ED. These are summarised by Goebel-Fabbri (2009) as perfectionism and frustration with blood sugar ranges and weight; higher BMI and/or weight gain associated with intensive insulin treatment; Feeling deprived of food choices and attention to food portions and weighing. She suggests that these factors may parallel the rigid thinking about food and body image that is seen non-diabetic females with ED. When considering the aetiology of DEB and T1, it appears to be associated with, and to a lesser degree, predicted by, physical, psychological and family factors - for example, higher BMI, lower self esteem and maternal eating attitudes, (Colton 2007; Olmstead 2008). Although these risk factors are in line with those throughout the general population, adolescents with T1 diabetes have a higher BMI (Peveler 1992 and 2005) and the incidence of those with a BMI > 25 increases between adolescence and young adulthood from 21 to 54% T1 females and 2 to 28% T1 males.(brydon 2001). 3. Screening As far back as 1986, Wing recommended administering questionnaires in clinic to raise aware of ED and encourage more discussion between doctors, nurses, dietitians and their patients, but current 4

5 specific screening tools for ED are designed for research purposes and have not yet been validated for clinical use. (Goebbel-Fabbri, 2009) However, there are well validated self-report screening measures for eating disorders that can be used in a clinical setting, such as Eating Attitude Test (current version EAT26) and the Modified Diagnostic Survey for Eating Disorders, both of which have been used in individuals with diabetes (Creigo, et al 2009). On completion of these self reports, a scoring system indicates the severity of an eating problem and any diagnosis should be confirmed by clinical interview. However, clinicians should always be on alert for any warning signs of an ED (or DEB) and common signs that should be of concern are reduction in psychosocial functioning, neglect of diabetes management (recurrent ketoacidosis, unstable glycaemia) and significant weight loss or gain (Rydall,1997). A brief self-administered screen for DEB, e.g. Diabetes Eating Problem survey Revised, which can be completed in less than ten minutes, could be used routinely in clinical care of young people with diabetes, Markowitz, However, the validity of the survey has not been determined when used in various populations and matched against the EDE - Eating Disorder Examination (Markowitz, 2010). Colton, 2007 recommended screening for disordered eating in pre-teens, with early intervention targeting the known risk factors, for example maternal attitude towards weight and eating, to ameliorate early disturbances. Similarly, Powers, 2012, suggested that early identification of the co-morbidity of ED with DM was an important factor in terms of achieving a more favourable outcome from interventions. She identified that those who had ED and DM had more positive psychological health at diagnosis of the ED, and that there was a shorter period between the onset of the ED and its diagnosis. Powers also concluded that screening for body image and eating disturbances should include adults and overweight/obese patients with DM, as a mean age of 26.2years, and BMI range , was identified in patients with DM and ED in this study. The EAT26 questionnaire is commonly used in Mental Health settings. A score of less than 20 indicates that an eating disorder is unlikely. A score of indicates some aspects of an eating disorder, but in clinical practice it may be appropriate for a non-eating disorders specialist dietitian to manage this level. A score of above 30, indicates significant issues and should trigger a referral to the Eating Disorders Specialist Team. In a very simple suggestion and because of the poorer morbidity and mortality with insulin restriction or avoidance, Goebal-Fabbri, 2008, recommended that the simple screening statement I take less insulin than I should should be asked in clinic. This could potentially identify patients at risk and allow for intervention to take place at an earlier stage. Primary care makes use of the SCOFF questionnaire (Morgan, 1999), which raises suspicion of a possible eating disorder with a score of 2 or more. However, this questionnaire is not validated for use in people with diabetes. 4. Treatment Treatment can only be appropriately designed after a thorough assessment of the presentation. As well as the risk factors for an eating disorder, the assessment should also include the psychological and social impact of living with diabetes, Khalida Ideally an assessment should be undertaken by 2 different members of the multidisciplinary team. The assessment should also be repeated on 2 occasions within a short time period (e.g. 2 weeks) to ensure a complete and valid result is obtained. 5

6 Once the assessment is complete, a package of care should be offered that considers all the physical and mental health risks of the presentation. Treatment packages will vary from service to service, depending on capacity and available resources. Some will be able to offer extensive treatment, whilst other services will be more restricted. In the event of an identified risk for which no treatment is available, it should be flagged up and recorded in the care package as an un-met need. This is a clinically appropriate response and in line with safe practice guidelines, thus passing the responsibility up the line of management away from the clinician. Pre-assessment: Before assessing for an ED in someone who has DM, it is important to be aware of what inappropriate behaviours can be present. From clinical practice, inappropriate behaviours for ED in patient with Diabetes may fall predominantly into 2 categories: 1. living on the edge of hypo s food restriction / anorexia variant Minimal total daily calorie intake (hence minimal use of insulin) CHO avoidance Perfectionist dietary approach Excessive exercise 2. living on the edge of DKA bingeing / bulimic variant Binge on high carbohydrate foods Intentional omission or significant under-use of insulin resulting in persistent hyperglycaemia and/or ketoacidosis (unique and extreme weight control method) Excessive exercise Other compensatory behaviours self induced vomiting, laxative abuse etc (see earlier section However a combination of the above may also be observed. Treatment planning: People with Diabetes presenting with an eating issue will be either an Acute presentation / new diagnosis of an ED Chronic (ongoing) ED / new presentation of mild to moderate ED or disordered eating The treatment plan and ED and DM MDT support required for a patient will depend on this presentation. Acute Presentation / New Diagnosis of an ED 6

7 In the event of an acute presentation and/or new diagnosis of an ED, the ED MDT needs to be involved to undertake a detailed assessment and lead on developing the initial treatment plan. The diabetes MDT including the dietitian must become known to, and involved in, the Multi Disciplinary network of clinicians involved in delivering the initial ED package, and members of both teams should have a good understanding both the ED and DM diagnoses. It is recommended that an ED specialist dietitian is working within the ED team and a good collaborative working relationship is essential. The ED dietitian will lead the dietetic care in this scenario and will be advised by the DM dietitian and DM nurse with regard to insulin management. Important points to consider when delivering an acute ED and DM treatment plan: 1. Eating Disorders Service to lead and be responsible for care, but may not necessarily implement the treatment plan due to the care setting (i.e. acute medical or psychiatric IP) as this setting is determined through initial assessment and local services 2. Low threshold for inpatient treatment especially when patient unable to appropriately administer own insulin and acute presentation may be require medical intervention to stable the patient. 3. Avoid the patient being able to split professionals - especially easy when two disciplines involved (e.g. two dietitians, two nurses). 4. Essential to have comprehensive, collaborative ED- specialist MDT with clinical governance and DM specialist input: a. Consultant Psychiatrist b. Eating Disorders specialist nurse c. Eating Disorders specialist dietitian d. Representation from Diabetes MDT e.g. Diabetes specialist doctor/nurse/dietitian 5. Being vigilant about physical presentation for acute complication prevention a. Ketotic breathe b. Mental concentration c. Dry lips and other markers of hydration (urine colour) d. Poor self care, etc 6. Treat patient per local ED Care Pathways 7. In addition to guidelines on nutritional management of children, adolescents and adults with diabetes ( Smart et a, 2009 & Diabetes UK, 2011 ), refresh / be aware of DM specialist knowledge and approach in line with local DM pathways and specifications Insulin regimens i. types ii. actions iii. timings iv. appropriateness for individual Structured diabetes education packages delivered locally e.g. DAFNE (T1), DESMOND (T2), and Xpert (T2). Self monitoring guidelines Appropriate BG targets for individual. Acute and chronic Complication management i. DKA prevention / Sick day rules ii. Hypo management iii. Retinal issues early worsening syndrome iv. Kidney function v. Gastroparesis, etc Special DM considerations relevant to the treatment of the ED i. Weight gain associated with insulin restart ( ref.) and possible oedema ii. Complications of DM can be hastened by an ED, (Birmingham, 2010) 1. Microvascular retinopathy, nephropathy, etc 2. Macro vascular cardiovascular disease, stroke, etc 3. Hypoglycaemia 7

8 4. DKA 5. Infection 8. DM team to lead on diabetes medication adjustment. Once the patient has been stabilised and the treatment plan implemented, on an in- or outpatient basis depending on presentation, handover of care needs to take place between the Eating disorders service and the Diabetes service, who will resume responsible for chronic management. In clinical practice, this may be done in 3 stages, namely firstly ED staff assume care as an inpatient, and then there is a joint care and finally full return to diabetes self care in an outpatient settings. In another setting, plans for discharge home are made after 1-3 weeks on ED IP unit with twice weekly follow up by diabetologist with pending plans for readmission to day programme. Chronic Ongoing ED or New Presentation of Mild to Moderate ED or Disordered Eating In the event of a chronic presentation and/or new diagnosis of a mild to moderate ED or disordered eating, the DM MDT needs to undertake regular assessments and lead on delivering the treatment plan. The ED MDT should be known to, and involved in, the Multi Disciplinary network of clinicians involved in delivering the DM package, and members of both teams should have a good understanding both the ED and DM diagnoses. It is recommended that a DM specialist dietitian is working within the DM team and a good collaborative working relationship is essential. The DM dietitian will lead the dietetic care in this scenario and will be advised by the ED Dietitian as/when required on appropriate dietetic interventions. Important points to consider when delivering a chronic or mild to moderate ED and DM treatment plan: 1. Diabetes Service to lead care ( Takkii, 1999) and regularly re-assess to ensure appropriate treatment plan implemented 2. Avoid the patient being able to split the team (more likely to be within the diabetes team, or with an external therapist, rather than whole ED team being actively involved) 3. Low threshold for inpatient treatment or referral to ED MDT if acute presentation becomes apparent 4. Essential to have comprehensive, collaborative DM specialist MDT with clinical governance and ED-specialist input: e. Consultant Diabetologist, f. Diabetes Specialist Nurse g. Diabetes Specialist Dietitian h. Mental Health HCP experienced in ED 5. Being vigilant about physical presentation for acute complication prevention a. DKA b. Hypoglycaemia A guide to Medical Risk Assessment for eating Disorders, Treasure 2009 ( and Birmingham & Treasure 2010), and guidance on brief essential medical examination and risk, should be locally utilised by teams. 6. Anticipate common hurdles in ED and DM treatment (see next page) 7. Treat patient per local Diabetes Care Pathways for Type 1 Diabetes 8. ED specialist knowledge and approach in line with local ED pathways and specifications 9. ED team/gp to lead on MH medication adjustment. 8

9 For any patient who is in treatment for an ED, the path of recovery is interrupted regularly by physical and psychological challenges. For someone with T1 DM and an ED, there are additional factors to those commonly experienced and it is important for any clinician working with a co-morbid presentation of DM and ED to be aware of all these barriers to recovery. Anticipate common hurdles in treatment (Goebel-Fabbri, 2009; Bermudez, 2009): 1. Insulin oedema or fluid retention may promote weight and shape concerns as blood glucose improves, triggering an increase in distress around body image and a reduced tolerance of weight restoration or stabilisation 2. Hypoglycaemia may trigger BE episodes or a return to insulin restriction to prevent it Goebbel Fabbri, Perfectionist behaviours regarding nutrition, weight and blood glucose goals may interfere with a gradual approach to progressing through treatment 4. Dietary restraint associated with attempts to lose weight may reinforce cycles of bingeing and purging 5. Depression may increase hopelessness and decrease motivation for self-care, thereby perpetuating hyperglycaemia 6. Substance or medication abuse other than insulin 7. Weight gain with improved control due to renal threshold 8. Appetite stimulation as a result of insulin administration and improved control (hyperglycaemia may reduce appetite) 9. Weight gain due to rehydration 10. Feeling hypo at normal blood glucose levels 9

10 Summary of optimal ED treatment 1. Undertake detailed ED assessment - preferable to have two clinicians from different disciplines to enable thorough detail 2. Expectations of patients and service explored 3. Clear discussion of what is non-negotiable e.g. - Regularity of weight checks as deemed appropriate by clinicians - Keeping safe driving, sport - Accurate and honest sharing of information and data, etc. 4. Collaborative MDT working essential (Neilsen, 2002, Goebel-Fabbri 2009) 5. Inpatient treatment if patient is not medically safe (Davidson, 2003; a 3-step treatment: achieve acceptable glycaemic control to medically stabilise the patient* then focus on resumption of healthy eating behaviours. Finally optimal controlling of DM and ongoing stabilisation of ED) NB initially insulin administered by staff, progressing to patient adopting responsibility for own insulin. 6. At least weekly OP therapy with experienced therapist to identify and work towards managing the emotional distress that triggered the ED 7. Joint consultations with the DM educator (± medical) involved in care (as appropriate) 8. Patient Education in ED and DM is essential to promote self care within patient s ability, especially ensuring their understanding of high risk 9. Individualised, realistic, attainable treatment goals for diabetes are essential: - For re-establishing patient on appropriate insulin dose preferably self-administered - For improving overall blood glucose control - For normalizing eating patterns 10. Family education/support is important: - Patient may need assistance with taking insulin - Patient may need assistance with taking BGs - Motivated patient may benefit from intensive diabetes technologies such as CSII or CGM (Pinhas-Hamiel O et al 2010) - Family therapy may be recommended (Rodin 2002) Peveler, 1992, trialled a modified CBT approach with T1 and BN, with some successful outcomes in eating behaviour and glycaemic control, although interpersonal therapy may have been a more suitable intervention for some patients, to alleviate the demands of monitoring as a source of resistance. The authors describe the conflict for the therapist between the flexible approaches to eating, promoted in the cognitive behavioural approach to BN, by comparison with a more rigid approach to diabetes diets at that time. However, in the past decade increase in insulin dose adjustment education programmes e.g. DAFNE, should complement this approach. Takki (2003), also had promising metabolic and psychological improvements, which were maintained using Integrated Inpatient Therapy for T1 with BN 10

11 4b. Relapse Prevention Relapse prevention should be an integral part of the treatment for any ED and will generally be considered throughout treatment and in particular towards the completion of treatment. It will involve enabling someone to recognise and avoid triggers and high risk situations which would otherwise tempt the individual back into inappropriate coping strategies. Any urge to reduce weight through dietary modification/restriction or any urge to misuse insulin must be discouraged and discussed. It is important that an individual is taught to manage difficult feelings through strategies that do not include food, fluid or insulin (as well as other coping known strategies e.g. vomiting, laxatives, self-harm).type 1 diabetes is a chronic disease and so over time weight fluctuations may occur, with changes to insulin management, lifestyle changes etc for many T1 adults. Fortunately, this group of patients will have periodic contact with their diabetes team. It is therefore important that the diabetes team are aware of past eating disorders and the recovery made and that any future weight changes arising, are dealt with by the health professional and the patient, in a realistic and appropriate manner, and that the specialist diabetes dietitian is involved in this, and indeed there is the advantage of noticing recurrent eating disorder symptomology, sooner (Powers, 2012). Qualitative research of MDT staff within the diabetes team, established that integrating diabetes care with that offered for disturbed eating or weight control, should be part of clinical practice with support from a local psychologist experienced in eating disorders (Tierney, 2008) 5. Prevention Over the past decade there have been a few studies that have looked at service provision for prevention of an ED in young females with a diagnosis of T1DM. Rubin (2001) suggested that the DM team should be familiar with strategies for primary prevention of an ED in this group, but over the following years there has been discussion about what is appropriate to include in a prevention programme. Starkey (2010), following a literature review, concluded that prevention strategies that target ED s in young female T1 DM s have not been investigated. The evidence available suggested that programmes should include interactive and participatory-based interventions, rather than didactic/psycho-educational and furthermore they should be conducted within a framework that could be evaluated. The programmes would include flexible diabetes care regimes, self esteem enhancement groups and the use of a problem-solving approach. However, in 2011, Takki suggested that ED prevention should be a particular focus at onset of T1 in the high risk group of girls aged 7-18yrs, and that in particular psycho-education should start as soon as possible after diagnosis. There is agreement in some studies that clinical practice which supports normalising eating behaviour, enhancing self-esteem (based on personal attributes other than weight/shape) and encouraging structure and routine of family meals, will act as a protective function against ED s in adolescence. In addition to this, there should be early recognition of an ED developing, with a low threshold of referral to an ED service. (Colton 2007; Maffeis 2008) High risk young people are identified as those who are overweight and those who express body dissatisfaction. It is important that these young people are helped to understand healthy ways to manage their weight, Neumark-Sztainer, It is extremely important for the dietitian who is working with these young people to understand and adopt an active listening technique. This approach demonstrates respect and understanding of the difficulties and beliefs that patients describe and helps prevent a clinician becoming dismissive or directive. This was evidenced by Hillege (2008) who recorded the outcome from qualitative interviews with individuals with T1 and ED. It highlighted the importance and value of being understood and listened to. 11

12 6. Diabetes Control and Complications Over the past twenty five years, there have been many studies that have looked at the statistical relationship between various inappropriate compensatory behaviours (ICB) on, glycaemic control, hospital admissions and the onset of the more serious and common complications of diabetes. Risk of accelerating the onset of complications of diabetes may be very high with disturbed behaviours (DEB) and clinically diagnosed eating disorders (ED), particularly when the blood glucose levels are persistently elevated and HbA1c is consistently raised. Behaviours resulting in regularly low blood sugars create significant and often imminent risk with driving, use of machinery, or being in charge of vulnerable adults or children and this is especially important in those presenting with AN and Type1DM. The severe dietary restriction of carbohydrates and fats that often presents along with excessive exercise can create a situation where a patient can live permanently on the edge of a hypo. All patients should be made aware of their responsibilities in regard to driving and hypoglycaemia by their diabetes team, DVLA Control The majority of studies to date have shown that glycaemic control, measured as HbA1C, is significantly worse in T1 with all subtypes of eating disorders (Jones, 2000, Fairburn 1991, Peveler 1992, Bryden 1999) Significantly poorer control was found even in new onset, and relatively mild DEB (Olmstead, 2008, Rydall 1997) as well as in self-reported bulimic behaviour in adolescents although Wing 1987, states that further studies are needed to show cause-and-effect relationship. Herpertz 2001 & Polonsky 1994, demonstrated that intentional insulin omission for weight loss, was associated with poorer control, particularly for intentional weight loss, with the risk of poorer glycaemic control was across all age ranges years ( Polonsky, 1994). Takki, 2002, classified three distinct subgroups of inappropriate compensatory behaviour (ICB) in patients with T1 diabetes and bulimia nervosa: insulin omission plus another ICB; only insulin omission; and no insulin omission but another ICB. Those patients groups omitting insulin had the poorest metabolic control and higher hospital admission with DKA. However, the long term complications were not statistically significant in any group. Interestingly, the lowest level of psychological distress was in the subgroup which only used insulin omission as ICB. Contrary to most studies, Colton 2007, found no worsening of glycaemia control with T1 females with DEB, but this was possibly due to the lower prevalence of binge eating and insulin omission in the younger age group studied. Complications Steel 1987 & Peveler, 2005,Goebbel-Fabbri 2008, Bryden 1999, & Rydell 1997, all found a strong relationship between ED and DEB and development of serious micro vascular complications neuropathy, retinopathy, nephropathy, However duration of diabetes and the eating disorder, and emergence of various complications varied between studies. Takki (1999) found that micro vascular complications were worse in T1 diabetes with BN, compared to those with BED, who in turn had worse micro vascular complications than controls. Further, in 2008, Takki found that severe insulin omission for weight loss (defined as 25% of prescribed dose omitted) was the single behaviour most closely associated with retinopathy and nephropathy, and in 2002 Takki found that hospital admission 12

13 for DKA was higher in this group. Steel, When painful polyneuropathy developed in anorexia nervosa cases, pain remitted with weight regain. Intentional insulin restriction for all reasons (not just weight loss) were particularly higher risk of nephropathy, Goebbel-Fabbri ( 2008), neuropathy, retinopathy, and this was found across all age ranges years, Polonsky Mortality Nielsen, 2002, found that mortality rate was 34.6 (per 1000 person-years) for concurrent cases of Type 1 diabetes and an eating disorder, compared to 2.2 and 7.3 for Type 1 diabetes or anorexia nervosa only cases. Further if, Type 1 diabetes is followed by dual diagnosis of anorexia nervosa; there is significant increase in mortality, compared to the reverse scenario. Goebel Fabbri (2008), notes intentional insulin restriction (for all reasons) predicted a threefold relative risk of death over the 11 year period. Case examples of Dead in Bed are described in Gomez,

14 Type 2 diabetes Although there may not be the acute medical crisis with Type 2 patients with eating disorders or disordered eating which can arise with T1 diabetes and eating disorders, it is still an important clinical and economic consideration. Type 2 diabetes population accounts for approximately 90% of cases of diabetes in UK. Given that the cornerstone of treatment is diet and lifestyle, adjunctive to Oral Hypoglcaemic agents, GLP-1 therapy or insulin as required to achieve optimal glycaemic control, and given the prescribing costs for diabetes management consideration of the prevalence and implications for management is an important issue (Jennings 2010). 1. Prevalence Binge eating disorder (BED) became a distinct diagnosis in DSM-V, Over 50% of the diagnosis of eating disorders found in people living with Type 2 diabetes are BED, although cases of AN, BN and EDNOS are also found, (Papelbaum 2005, Herpetz 1998, Frunza 2011). The prevalence of eating disorders in people with Type 2 diabetes varied in studies between 5.9% to 34.1% (Herpetz, 1998; Papelbaum, 2005, Frunza 2011, Canan, 2001, ; Crow 2001) Studies considering clinical diagnosis BED alone found that between 1.4% % met criteria for BED (Mannucci 2002, Canan 2011, Kennardy 1994, Allison 1997, Webb 2011). Variation may be due to difference in studies in terms of age range of the populations studied, or the self-selection of some patients in some studies. Abnormal eating One study of youths (10-17years) with T2 diabetes, demonstrated 20% of the sample was classified as sub-clinical binge eaters and 6% as clinical binge eaters ( Today 2011), and Meneghini 2006, found 40% of a sample of people with Type 2 diabetes had abnormal eating. A sample of Type 2 patients using a self-questionnaire (QEWP-R), showed that 29% had a presumptive diagnosis of BED (majority female). Night eating syndrome was 3.4% in a self-selected group with older age range (Alison 1997) and 9.7% of a group of diabetes patients self-reported night eating (Morse 2006). Males Less males than females showed binge eating behaviour (Melo 2009). Nine percent males compared to 21% females, met criteria for serious binge eating problem from self-reported binge eating symptoms, Wing Aetiology Prevalence of eating disorder increased as BMI increased (Papelbaum, 2005, Crow 2001). Kenardy, (2001) found that as well as higher BMI, binge eating was associated with poorer wellbeing, earlier age of diagnosis, poorer self-efficacy for diet and exercise self-management. Herpetz (2001), found that both mean body mass, and eating disorder symptoms such as drive for thinness and body dissatisfaction increased in the average obese type 2 diabetic sample, 14

15 illustrating the vicious circle of low self-esteem, enhanced restraint eating and binge eating in weight control measures. Additionally, from The Look Ahead data, (Gorin 2008); patients who reported binge eating behaviour were younger, heavier at baseline, and had more extensive weight loss history both in terms of number of attempts, and total amount lost, Mannucci 2002 concluded that type 2 diabetes was unlikely to induce relevant eating disturbances in Type 2 diabetes patients. 3. Control and Complications In general, studies showed that BED and binge eating were associated with poorer HbA1C (Canan 2011, Meneghini 2006, Mannucci 2001); even when controlling for BMI and exercise levels (Kenardy 2001). As well as poorer HbA1C, Triglycerides were significantly higher and mean HDL lower in the BED group, (Melo, 2009). Morse (2006) also found worsening control and increased likelihood of 2 or more complications, within the group of patients reporting night eating syndrome. However, not all studies demonstrated significantly poorer glycaemic control (Crow 2001, Wing 1989, Gorin 2008). 4, Screening practice The SCOFF tool has already been discussed (see Type 1 diabetes screening section), and Meneghini (2006) suggest using questionnaire of eating and weight patterns (QEWP), as a quick screening questionnaire, to detect abnormal eating patterns in this client group. From the literature available, early assessment for disturbed eating behaviour, weight and shape concerns, particularly in the younger patients is essential (Today 2011), and particularly being alert to patients who are heavier, younger at diagnosis and have been heavier in the past ( Kenardy 1994). The Look Ahead study, which monitoring changes over several years, in a lifestyle programme for Type 2 diabetes (Gorin 2008); suggests that it may be useful to assess binge eating behaviour during the course of intervention, rather than just at the start of interventions. Webb (2011) found that of 34.5% of weight loss surgery patients who had Type 2; almost 25% of these had co-occurrence of BED and T2 diabetes. This indicates implications for pre- and post bariatric screening too. 5. Treatment There has been one RCT (Kenardy 2002), which compared group CBT and Group Non-prescriptive therapy (NPT) for Patients with Type 2 diabetes who were binge eating. No differences between CBT and NPT were found at post treatment, with both treatments being associated with significant changes in binge eating, mood, and BMI. However, there was significant relapse in binge eating at 3 months in the NPT group. Also, reduction in binge eating from pre- to post-treatment was associated with reduction in HbA1C, independently of weight loss. Given that contempary dietetic practice for Type 2 diabetes focuses on weight management, as part 15

16 of the nutritional management (Diabetes UK 2011), it is important to consider how disturbed eating behaviour can be safely managed. Comparative studies show that overweight and obese with diabetes lose less weight than those without diabetes and that obese or overweight persons with diabetes face additional and different issues from non-diabetic trying to lose weight. (Cochrane, 2009). In addition maintenance of weight loss is poorer and Guare (1995) suggests that a continuous care model may be needed for overweight Type 2 patients, to deliver and maintain more effective outcomes. What seems evident is that weight management for patients with Type 2 diabetes should be considered as distinct intervention, which allows for the specific consideration of the psychological as well as the pharmacological factors affecting the patients eating behaviour and weight. Wing 1989, found that BES scores decreased significantly following a weight-control programme. However, although this was not associated with weight loss or improved glycaemic control, it indicates that weight management programmes would not worsen the BES for individuals with T2 DM, as did Gorin Also, as diabetic bingers showed significantly higher disinhibition scores (controlling eating in response to situational and emotional cues, Kenardy 1994), this should be born in mind, when planning programmes tailored to the particular needs of these patients. 16

17 Summary of the Clinical Management of Eating Disorders and Disordered Eating in Patients with Diabetes Patient with Diabetes (DM) Diagnosed Eating Disorder (ED) needing acute management YES NO Prevalence of ED issues in DM Referral to Mental Health Eating Disorders Service for specialist ED support New ED identified Screen for eating issues Maintain high suspicion for ED issues Collaborative working between services to support DM /medical issues while acute ED issues being addressed Anorexic tendencies ED issues identified, but not fulfilling diagnostic criteria Purging tendencies Bingeing tendencies ED not otherwise specified Collaborative working and clinical supervision from ED services to support DM services manage patient holistically Treatment Principles 1. Essential to have comprehensive, collaborative MDT with clinical governance 2. Inpatient treatment if patient not medically safe 3. Intensive outpatient treatment by competent HCP 4. Patient Education in ED and DM to promote self care within patient s ability 5. Individualised, realistic, attainable treatment goals: For re-establishing patient on appropriate diabetes medication regimen For improving overall blood glucose control For normalizing eating and drinking patterns For developing positive coping strategies Outcomes of Treatment and Prognosis 17

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