1. Eating Disorders in Children and Teens with Type 1 Diabetes 1984-ongoing Denis Daneman University of Toronto And The Hospital for Sick Children

2. ED Classification Clinical/full-blown: DSM-lV: –Anorexia nervosa –Bulimia nervosa –Eating Disorder Not Otherwise Specified (EDNOS) Subthreshold (not subclinical) –Disturbed Eating Behavior that does not meet criteria for full-blown ED, but with clinical consequences (e.g. A1c, complications)

3. Eating Disorders: Core Features : Body dissatisfaction Drive for thinness Dietary restraint Diabetes-specific vulnerabilities: Insulin-related weight gain Nutritional counseling Poor self-esteem Individual, family, and societal factors Disordered eating attitudes and behavior: Insulin omission Binge eating Dieting Diabetes-specific outcomes: Poor metabolic control: high HbA1c Microvascular complications, e.g., retinopathy Working Model : Rodin & Daneman 1992

4. Predictions arising from our model: 1.Prevalence 2.Natural history 3.Associated with poorer control specific behavior, especially insulin omission early complications specific family issues 4.Difficult to treat

5. Jones et al, BMJ 2000: DSM-IV diagnosable ED DM: 356 –DSM-IV: 36 (10%) AN 0 (0) BN 5 (1.4) NOS 31 (8.7) Controls: 1098 (3:1) 49 (4%) <.001 0 (0)NS 5 (0.5)NS 44 (4.0) <.001 OR = 2.4 (1.5-3.7)

6. Jones et al, 2000: Subthreshold Disorders: DM: 356 – 49 (14%) DSM-IV + ST 85 (24%) Controls: 1098 84 (8%) <.001 OR = 1.9 (1.3-2.8) 134 (12%) OR = 2

11. Obstacles identified during initial assessment Intrapersonal Barriers Number (%) Mental health issue in teen (total) Weight and shape concern Low Mood Anxiety Substance abuse Oppositional behavior 25 (81%) 18 (58%) 10 (32%) 6 (19%) 3 (10%) 2 (6%) Fear of Hypoglycemia 6 (19%) Learning and attention problems 4 (13%) Significant knowledge deficit 0 Interpersonal Barriers Single Parent Family 13 (42%) Inadequate or ineffective parental support 29 (94%) Family systems difficulties 26 (84%) Mental health issues in parent(s) 10 (32%) Financial stress 13 (42%) *multiple obstacles were identified in the majority of these subjects

12. HbA1c by Disordered Eating Status at Baseline and Follow-up. HbA1c (% ) *HbA1c for the highly disordered group was significantly higher than the moderately and non-disordered groups at baseline, p<.001; **HbA1c for the highly and moderately disordered groups was significantly higher than the non-disordered group at follow-up, p<.005 (Rydall et al., 1997).

13. Binge eating **Insulin omission ***Self- induced vomiting Laxative use Percentage of Sample *Dieting McNemar’s test for change in prevalence, baseline to follow-up: *p=0.01; **p=0.003; ***p=.06 (Rydall et al., 1997). Common behaviors in girls with type 1 diabetes.

14. Age and Prevalence of Insulin Omission for Weight Control. 1 Colton et al., 2000 (n=90): 1% prevalence of insulin omission in pre-teen girls; 2 Rydall et al., 1997 (n=91): 14% in adolescent girls (baseline assessment); 3 Rydall et al., 1997 (n=91): 34% in young adult women (four-year follow-up of baseline sample). Prevalence of Insulin Omission (%) Insulin Omission 9-13 years 12-18 years16-22 years

16. Evolution of ED in teen girls with T1D In progress, study of natural history of ED in girls with T1D; –Baseline: 101 9-13.9 yo with T1D & 303 controls –Follow-up of DM cohort for 5-8 years Demographics at Baseline: –Mean age 11.8 years –Mean A1c 8.2% –Mean duration of T1D 4.7 years

17. DISTURBED EATING BEHAVIOUR (last month) * *

18. % sample p =.001 EATING DISORDERS: T1D VS. SCHOOL GIRLS No sign differences in: Age A1c Duration of T1D Those with ED BMI > those without

19. FIVE-YEAR FOLLOW-UP 13.3% of participants (13/98) met criteria for an ED 3 girls had bulimia nervosa 3 had ED-NOS 7 had a subthreshold ED 44.9% of participants were classified as overweight or obese

20. FIVE-YEAR FOLLOW-UP A1c not higher in girls with DEB –(8.7% vs. 8.4%; p = 0.11) Trend for higher A1c in those with an ED –(9.1% vs. 8.5%; p = 0.08) BMI higher in those with DEB –(26.1 versus 23.5; p = 0.001)

21. ED POINT PREVALENCE & CUMULATIVE PREVALENCE BY AGE

22. FIVE-YEAR FOLLOW-UP Higher BMI and DEB were strongly associated, which presents a management dilemma Both dietary restraint and higher weight are risk factors for the development of ED and their negative health consequences

23. PREDICTION OF THE ONSET OF DISTURBED EATING BEHAVIOUR IN ADOLESCENT GIRLS WITH TYPE 1 DIABETES

24. LOGISTIC REGRESSION MODEL WITH BACKWARD STEPWISE REGRESSION Dietary Restraint Weight & Shape Concern Physical Appearance Self-Worth Depression X 2 = 43.254, df = 5, p<.0001 McFadden’s R 2 = 0.416

25. If the model is correct, then the prevalence of complications should be more common in ED: Percentage of Sample (Rydall et al., NEJM 1997). MicroAlbuminuria

27. Is family dysfunction more common in ED than nonED DM: To investigate if and how eating disturbances in girls with type 1 DM are associated with: 1.Mother’s weight and shape concerns 2.Mother-daughter relationships 3.Adolescent self-concept

28. Method TEENS (N=88) Age = 14.9 yrs. (+ 2.2) Weight = 58.9 kg (+12.7) BMI = 22.4 kg/m 2 (+3.7) Age of Diabetes Onset = 7.9 yrs (+ 4.0) Illness Duration = 7.1yrs (+3.9) HbA1c = 8.9 % (+ 1.6) MOTHERS (N=88) Age = 43.7 yrs (+ 5.5) Weight = 69.3 (+13.7) BMI = 25.9 (+4.9) Middle Class Completed 1-2 years of college, university, or specialized training

29. Perceived Relationships With Mothers Multivariate Group effect [F(6, 160 ) = 3.97, p =.001] Highly & Mildly Disturbed girls report more impaired relations with mothers on all dimensions compared to Non-Disturbed girls (p =.01) Communic. Trust Alienation

31. Mother’s Eating and Weight Loss Behaviors Multivariate Group effect [F (10, 138) = 2.12, p =.03] Mothers of Highly & Mildly Disturbed girls are more weight dissatisfied (p =.01) and are more likely to exercise for weight control (p =.02), diet (p =.05), and binge eat (p =.02). Satisfaction Diet Exercise Binge

32. Prevention and Treatment in DM and ED: Prevention: not reported Treatment: –CBT - Peveler and Fairburn 1989 –Fluoxetine - case report - 1990 –Psychoeducation - Olmsted 2000

33. Evidence-based conclusions: Model validation Eating disorders are more common in adolescent and young adult females with diabetes (Level 1) When present they are associated with –high frequency of insulin omission (Level 1) –worse metabolic control (Level 2) –earlier onset of complications (Level 1) –family dysfunction (Level 2) They are (more) difficult to treat (Level 4)

34. Approach to ED in DM Awareness of the association Ask the “right” questions If suspect “fullblown” ED - refer If subthreshold - clinic-based intervention Complication surveillance

35. Asking the “right” questions “Red flags” Dealing with reluctance to disclose Their stories… Partnering with patients Regaining control Treatment options

36. Red Flags Persistently high A1c Frequent DKA, illnesses Distress re: weight Widely fluctuating b.g.s Skipping meals “Binging”; feeling hungry all the time Skipping dosing/underdosing

37. Initial response to high A1c: Raise the dose Labeled “insulin resistent” Problem: “insulin avoidant”

38. Disclosure is very difficult Shame Feel like “failures” Failed: Their families Their providers Themselves Important to be nonjudgemental and supportive

39. In their words….

40. A start…. Information can be helpful “Unfortunately something many young people struggle with…” Insulin omission drives hunger Losing control over eating behavior Information for parents Families are angry, blaming They feel like failures too

41. Regaining control A step at a time Steps forward, steps back Treatment options: Partner with existing ED programs Requires collaboration Groups Conventional treatment Medication/Consult