How can Psychology improve the quality of life for non-compliant diabetic patients ?

1. How can Psychology improve the quality of life for non-compliant diabetic patients ? The case for integrated care DISN UK Group meeting London, 15th November 2017 Dr. Nikki Scheiner Consultant Psychologist Hertfordshire Partnership University NHS Foundation Trust

2. Aim of Presentation To highlight the importance of an integrated pathway for patients who are non-compliant with their diabetic treatment

3. Learning outcomes To improve understanding of the role of poor mental health in patient compliance with diabetic treatment; To promote the importance of joint working between Diabetic and Psychological/ Psychiatric services

4. Content overview • Setting the context • Vulnerabilities & Risks • Adding psychosocial to biomedical: • a) assessment; b) treatment • Barriers to care • The challenges to Healthcare Delivery: from collaboration to integration

5. ADJUSTING TO THE DIAGNOSIS

8. Type 1 diabetes in adults: diagnosis and management NICE guidelines [NG17]Published: August 2015; Last updated : July 2016 Diabetic early care plan includes environmental assessment to understand: “the social, home, work and recreational circumstances of the person and carers”

9. The tasks of becoming an adult • Identity formation • Creating relationships outside the family • Career • Identifying values • Experimentation: alcohol / drugs / late nights

11. Setting the context

12. In general, non-adherence to treatment indicates some level of emotional dysregulation and/or impaired health literacy. This may reflect learning difficulties, personality traits, mood disorder and/or serious mental illness. This applies irrespective of whether the patient’s treatment adherence is unconsciously or intentionally driven.

13. Bi-directional risks

14. Impact of physical health condition on mental health 25% of individuals diagnosed with physical health condition develop mental health problem as consequence of stress; Laboratory-based studies report particular sensitivity to stress in poorly controlled patients with Diabetes

15. Impact of mental health problem on management of Diabetes Management is increasingly disrupted Recovery is impeded Confidence in health professionals to help is reduced – high rate of DNA Mental health conditions increase -> additional co-morbidities Escalating diabetic complications (neuropathy, retinopathy, nephropathy, death)

16. Vulnerabilities & Risks: mood disorders, personality difficulties, and learning disabilities

17. Anxiety in Diabetes • Phobic symptoms related to self-injection of insulin and self-monitoring of blood glucose associated with difficulties in adhering to self care • Results in further distress • Results in increased glycaemic levels

18. Depression in Diabetes Partly explained by the burden of living with a chronic disease that demands daily self-management in order to maintain homeostasis []

19. Factors contributing to Depression in Diabetes

20. Depression and Diabetes Major depression - esp persistent untreated - doubles life-time risk of developing T2 diabetes; Epidemiological studies show two-fold increased prevalence of depression and anxiety in patients with type 1 and type 2 diabetes compared with the general population worldwide Depression in Diabetes is associated with poor microvasular and macrovascular outcomes; also with increased risk of dementia

21. Depression in Diabetes Comorbid state of depression with diabetes has greater impact than adding the two conditions separately [WHO World Mental Health Survey]

22. Incidence of Depression in Patients with Diabetes 20%

23. Impact of Depression in Diabetes

24. Health care expenditure in diabetic patients 4.5 times higher for individuals with depression than for those without depression

25. Diabetes-distress • Reflects emotional response of patient to living with a largely self-managed chronic disease and its debilitating complications (e.g. disease progression); • Defined as patient concerns about disease management, support, emotional burden and access to care; • Associated with low physical activity, poor diet and medication adherence, poor metabolic control, obesity, depression & impaired quality of life.

26. Diabetes-Distress • Overlaps with depression, but is not interchangeable with it; • Diabetic-distress mediates association between depression and glycaemic control; • Depression amplifies diabetes- distress; [Snoek, 2015] • Measured by the Diabetes Distress Scale[Fisher et al, 2008]; • Problems Areas in Diabetes (PAID) [Polonsky et al, 1995]

27. Complexity requires tailored psychological interventions

28. Vignette : Social & emotional deprivation 23 year old woman; Both parents were alcoholic; high+++ levels of physical aggression in childhood home; divorced when patient was 6; Younger sibling died in infancy; Youngest brother set fire to mother’s home at 12; Autism and ADHD; Grandmother died 3 years before pt entered mh services Self-harm since 6 (ongoing) ; Pt attempted suicide at 7; Left school without qualifications; Left home at 16 because pregnant; child taken into care; Had another child: autistic; Self-esteem: ‘I’ve got none’; Relationships history: ‘They don’t last’. Hip injury left her with impaired mobility and pain: walks with crutch Used to be a Skunk smoker; now smokes 60 cigarettes a day

29. Vignette : Social & emotional deprivation Diabetes Hx: Diagnosed at 21; Reaction: ‘I’ve been cursed: I’ve never fitted in’. Frequent vomiting; constant hospital admissions with DKA; Neuropathy in calves and feet; Did not attend appointments with Diabetologist; Denied non-compliance with treatment; Well supported by DISN. Therapy: Attended Transition group; Then requested individual therapy; Worked on understanding emotions; Kept diary of Self-harm, Mood, & Insulin. OUTCOME: MADE A DECISION TO TURN HER LIFE AROUND – maintained at 1 year

30. BRITTLE DIABETES: BARRIERS TO CARE

31. Brittle Diabetes ‘ a small but conspicuous, exasperating, and expensive minority of patients whose lives are constantly disrupted by either recurrent hypoglycemia or recurrent ketoacidosis’ [Tattersall, 1985]

32. Contributory factors Aversive childhood – parental psychopathology; Parental conflict; Financial deprivation; Hx of dysfunctional relationships/ inability to maintain relationships; Adjustment problems to illness

33. Psychosocial factors Psychosocial factors significantly implicated in aetiology and maintenance of the condition

34. Emotional factors Emotional problems exceed expected level for patients with chronic health conditions; Brittle diabetes has been described as primarily a psychophysiological disorder, underpinned by untreated distress

35. The toll of dysregulated emotions Persistent high levels of anxiety, anger and arousal lead to stress. Stress counteracts the metabolic action of Insulin

36. Bio-medical-psycho-social in context of family WORRY SHOCK ADJUSTMENT WAYS OF COPING

37. Becoming an adult with Diabetes • Identity formation: ‘I am sick’ • Creating relationships outside the family : Have to disclose illness; intimacy • Career: may be impacted by symptoms • Identifying values : may be limited by disease • Experimentation: alcohol / drugs / late nights : interfere with adherence to treatment

38. Eating Disorders Even a mild eating disorder in an individual with Diabetes has potentially more serious consequences than in a person without Diabetes; High prevalence of young girls not taking prescribed dose of Insulin in order to manage their weight, leading to hospital admissions with severe DKA

39. Health professionals Depression is frequently overlooked in individuals with Diabetes; If detected, may be seen as ‘normal’ reactions to the condition

40. Health Literacy Assumption by health professionals that patients understand; Naïve beliefs; Illness perceptions If detected, may be seen as ‘normal’ reactions to the condition

41. How do you view your patients with Brittle Diabetes? Dr Nikki Scheiner nikki.scheiner@nhs.net nikki@nikkischeiner.com

42. Patients May feel guilty that they may have triggered Diabetes through dysfunctional life style impeding engagement Stigma of mental illness dissuades them from seeking care

43. Vignette 2 40 year old woman; Violent father; left when she was 6; Raped and sexually abused by step-father: 9-15; slept with knife under pillow; 15-18: lived with biological father 15-18: functioning alcoholic, heroin user; schizophrenia; Started taking overdoses at 15; Constant ritualistic self-harm; Binge drinking; cocaine; Walked out of first marriage

44. Vignette 2 Diabetic hx: Diagnosed at 27; Rarely took medication; Shocked to develop severe neuropathy in a short period of time: wheelchair bound, impaired use of hands

45. AN INTEGRATED SERVICE: HPFT

46. Impact of psychological interventions Slight improvement in glycaemic control in children and adolescents T2 DM No effect in adults (Winkley et al, BMJ, 2006); Most adults regain metabolic homeostasis in hospital, but quickly relapse on discharge; Children: intensive therapy (3-4 times a week) over 15 weeks on hospital wards produced significant improvement in glycaemic control. Maintained at 1 year follow-up (Moran et al, 1991) ; CBT associated with small improvements, particularly in managing depression in Patients with Diabetes, but not improving metabolic control

47. Low physical health needs Low psychosocial needs Primary Care Wellbeing Team Diabetes Service High physical heath needs Low psychosocial needs Low physical health needs High psychosocial needs Secondary Care RAID+ Team High physical health needs High psychosocial needs

48. RAID + assessment Biopsychosocial; Is the mood disorder treatable? Bespoke – not protocolized; Collaborative treatment plan drawn up over time

49. A model of Brittle Diabetes Adapted Model THE FEELING/TALKING BODY Symptoms are the idiom of distress: Pain, Hypos, DKA, Neuropathy, Retinopathy etc Reversible & Irreversible IMPAIRED MENTALIZATION & ALEXITHYMIA COGNITION Self: Loss; view of self as sick; Others: uncaring & unfair; ‘People don’t understand’ Future: hopeless: ‘I’ll never get better’ THE FEELING BODY BEHAVIOURS BEHAVIOURS Eat badly; Over-dose/ Under-dose on Insulin COGNITION

50. An integrated service King’s Program: 3DfD: focuses on physical, psychological and social aspects of illness Strong evidence that a holistic approach is the most effective RAID + Team: groups offering behavioural, cognitive, emotion, and value based techniques. Main outcome measure is HbA1c Preliminary data from patients and clinicians is positive; 120K for mental health