Dealing with the Stress of Chronic Disease – with an accent on Diabetes

1. Dealing with the Stress of Chronic Disease – with an accent on Diabetes Frank McDonald Consultation–Liaison Psychologist The Townsville Hospital Queensland, Australia March 2008

2. Overview • The importance of psychological support for people with diabetes and their families • Psychological and social factors to screen for in the management of diabetes • Psychological and Primary Care interventions to improve clinical outcomes • Conclusion/Recommendations

3. Importance of a psychological perspective – across conditions • Everyone with a chronic health condition suffers psychologically • Degree depends on number and intensity of challenges faced, and the quality of internal and external supports • Problem for pts and carers is not just disease management (biomedical aspects) – but pressure to cope

4. Importance of a psychological perspective – in diabetes mx • Psychological issues can exert considerable influence on glycaemic control in diabetic pts, and raise risks of ‘brittle diabetes’ and diabetic ketoacidosis 1, 2 • Diabetes is one of the most psychologically and behaviourally demanding of the chronic medical illnesses 3 • So health practitioners need to be alert to disruptions to psychological wellness. This usually requires regular screening for psychosocial issues. Many of these overlap with those of other long-term illnesses

5. Risks and interventions • Distress/ high levels of stress (feelings of being overwhelmed) increase noradrenaline and cortisol which mobilise glucose and fatty acids. Not quickly used up in diabetes, requiring insulin increase4 • As well, stress impairs insulin release. So postulated as a risk factor in developing Type 1 diabetes 5 • Clinical evidence: cases of late onset diabetes after major stressors like cancer or heart surgery in pts who would probably have otherwise remained genetically dormant

6. Risks and interventions • May explain ‘brittle diabetes’ i.e. problems even when pt does everything right. Though relationship between it and stress not simple. May represent extreme end of adaption spectrum since such pts often present with more psychosocial risks6 • Stress management training (with its focus on frequent ‘hormone holidays’) over 5 weeks improves blood glucose control at 1 year f/u 7 • Onset distress a focus in some studies 8. An anxious, emotionally-demanding time for most sufferers of chronic conditions as wait for test results, get over shock etc

7. Risks and interventions • AnxietyDisorder rates much higher in diabetics than non-diabetics. Up to 20% vs. 10% Worse when two or more chronic complications9 Common fears contribute e.g. of hypo’s or future complications • May affect metabolic control indirectly by interfering with self-care. Direct effect on metabolism un-researched but probably similar to Distress mind-body effects • Psychological anxiety management strategies can help here. These include standard cognitive, behavioural and physical relaxation strategies

8. Risks and interventions • Depression is associated with poor outcomes in many chronic conditions. Higher prevalence (near double) and relapse in those w. diabetes than general population – at least 1 in 5 10 and average 4 episodes over 5 years 11 • Associated with poor rx adherence, hyperglycaemia, cardiovascular disease and retinopathy 12 • Also associated with risky behaviours like food and alcohol binging and less attention to diabetic cues 13

9. Risks and interventions • What’s Depression and what’s Diabetes? Making distinction is important. Easy to mistake similar signs and symptoms as direct effects of diabetes. So, like other psychological conditions discussed, often goes unrecognised, with substantial impact on QoL and self mx. • Depression less inevitable, more easily managed of two conditions • Symptom overlap between them (both have physical symptoms) can be discriminated with screener e.g. Beck’s Depression Inventory (BDI)

10. Risks and interventions • High number of psychological symptoms (e.g. crying, loss of social interest, indecision, senses of punishment or failure, suicidal thoughts, dissatisfaction) vs. Physical (e.g. fatigue, sick & run down, libido loss) suggests Depression • Seven ‘psychological’ items above on BDI discriminate abnormally high levels of depression in groups of chronically ill people • No BDI access? Use checklist (Behaviours, Thoughts, Feelings, Physical) on beyondblue.org.au What is Depression? page to separate psychological influences

11. Risks and interventions • If confirmed, consider range of biopsychosocial options • Pharmacological options. Evidence says they usually work better when combined with • Psychosocial options – e.g. Cognitive therapy, activity scheduling, environmental changes, (outline examples), and Interpersonal Therapy (focus on communication and interpersonal skills, like assertiveness). Because issues can involve conflict e.g. with health professionals that are felt as disempowering. High levels of conflict are associated with recurrent hypoglycaemia and ketoacidosis 14

12. Risks and interventions • When diabetic symptoms increase, always check for Depression • Don’t assume physical and behavioural symptoms directly relate to diabetes. May be the result of undetected Depression

13. Risks and interventions • Social Connectedness (degree of social, family and community support). In chronic illnesses generally, excellent outcome predictor at 12 or 24 months - better than all traditional risk factors (like smoking, drinking, high cholesterol, diet and low exercise levels) combined15 • One way I assess this is to ask “Is there at least one person - professional, family or friend - you can turn to, if you were ever overwhelmed, to help work things out; who’ll stick by you over the long run; who believes in you?”

14. Risks and interventions • If “No” epidemiologists predict poorer outcomes across conditions • Diabetes research generally endorses encouragement of family support and improving family climate in everyday mx of diabetes to aids its control, especially with adults but less so adolescents16 • May be better to pair adolescents with peers than family in group (vs. 1:1) interventions 17

15. Risks and interventions • Need to screen for social support, practical and emotional. Check quality and quantity of ties with family, friends, community, church, professionals • Generally: families that cope better are flexible about roles rather than rigid and traditional. With diabetes: more cohesive, expressive and organised, less conflicted families are associated with less deterioration in glycaemic control and less severe acute complications 18 • Results on effectiveness of family therapy interventions are mixed 19

16. Risks and interventions • Life events and environmental factors (such as poor housing, stressful jobs, unemployment stress, indigenous pts being ‘out of country’) can have practical and emotional impacts on mx. These raise risk of distress, anxiety and depression and their effects • For “Self-destructive behaviours” (periodic or chronic serious mismanagement), common in adolescents, sometimes nothing short of residential treatment with group, individual and family therapy, education and medical supervision reduces diabetes-related hospitalisations 20

17. Risks and interventions • Group therapy for these pts often targets life coping strategies like social problem solving, cognitive behaviour therapy (e.g. for depression and worry and identifying attitudes and beliefs underlying problems with self-care) and conflict resolution skills

18. Risks and interventions • Neuropsychological function in depressed diabetics is usually more impaired than in healthy controls 21 • Milder for non-depressed, a (not statistically significant) trend towards worse functioning than in general population

19. Risks and interventions • Issues: attention, information processing speed (with effects then on memory encoding), and “executive functioning” (Use Luria’s ‘attend - plan - monitor – verify’ sequence to guide compensations) • Compensate with repetition, usual aide-memoires (like diaries, Webster-paks), environmental cues/prompts, more visual/less verbal educational material

20. Risks and interventions • General coping skills may be poor • Better copers • Seek social support (“I can talk to someone to find out more about this disease”.) • Can problem-solve (“I’ll find out how others deal with the effects of the disease.”) Not so much ‘emotional responders’ who advance little beyond worry, anger, denial etc • Use distancing (Try to detach from stressful situations) e.g. “I didn’t let it get to me. I refused to think about it too much.”

21. Risks and interventions • Develop a positive focus (efforts to find meaning in the experience by focussing on personal growth e.g. “I came out of the experience better than when I went in.”) • Don’t rely on mental escape/avoidance. (Associated with: Fatalism, passive acceptance, withdrawal from others, self-blame, efforts to forget disease, lots of 'escape fantasies' or wishful/magical thinking e.g. “I wish that the situation would go away.”) • Don’t rely on behavioural avoidance/escape (Efforts to avoid stress by overeating, over-drinking, excessive smoking, overuse of medication.)

22. Risks and interventions • Have helpful self-management beliefs e.g. “ I control many effects of illness not just doctors and nurses” while open about impact of remediable psychological issues on self-mx • Engage in less self-blame, helplessness or angry expression of emotion (blaming others)

23. Risks and interventions • Have more constructive attitudes, such as found in other chronic illness sufferers: “It's not my fault that this has happened to me. Factors outside my control lead to this illness but I do have a responsibility to help in my rehabilitation and care as challenging as that will be. I can exert some control over the effects of this illness.”

24. Conclusion/Recommendations • Research and clinical experience says no doubt that psychological factors adversely affect glycaemic control • Given evidence for high prevalence of issues, and their impact on outcomes, individuals with diabetes should be regularly screened for distress, depression & anxiety disorders by clinical interviews or questionnaires (e.g. the K10 – available on the Net) • Or screen via open-ended questioning about stress (family stress especially), social support, beliefs about their disease, coping style and behaviours that may impair individual’s glycaemic control

25. Conclusion/Recommendations • Interventions could include ongoing psychosocial support and encouragement and others listed, such as coping skills training, family therapy plus team and community responses to larger environmental issues22

26. Conclusion/Recommendations • Management of diabetes requires teamwork • Guidelines endorsed by International Diabetes Federation and WHO23 state that ideally both healthcare professionals and pts would have access to a Psychologist as an integrated team member or as an accessible team resource e.g. via GP mediated Medicare subsidy

27. Additional • See author’s website www.fmcdonald.com for a copy of this presentation and related paper “Coping with Psychosocial Effects of Chronic Illness on Individuals and Families”