HOW TO ASSESS THE PSYCHOLOGICAL NEEDS OF PEOPLE WITH DIABETES – Taking DAWN into action

1. HOW TO ASSESS THE PSYCHOLOGICAL NEEDS OF PEOPLE WITH DIABETES –Taking DAWN into action Frank Snoek, PhD Professor of Medical Psychology VU University Medical Centre Amsterdam fj.snoek@vumc.nl

2. Chronic Illness and medical treatment are a threat to: • …one’s body integrity and comfort • …one’s self-concept and future plans • …one’s emotional equilibrium • …fulfillment of customary social roles and activities Cohen & Lazarus,1979

3. Coping with Diabetes • Demands of daily diabetes self-care (continuous, pro-active coping) • Acute dysregulation (hypo’s/hypers – disruptive effects of stress) • Long-term goals – immediate frustration • Good behaviour does not always ‘pay-off’ • Complications – threat to autonomy

4. Living with diabetes is a balancing act Life stresses Uplifts

5. Two levels of psychological problems • ‘Psychosocial’ problems (coping) • Psychological/psychiatric disorders (Axis-1 DSM-IV)

6. Adaptational Breakdown: ‘Diabetes Burn-out’ Acumulating Negative experiences (“failure”) Negative attitudes Poor Self- care Poor Glycemic Control Hoover JW, 1988; Polonsky WH, 1999; Seligman, 1997; Snoek, 2000. Hoover JW, 1988;

7. Psychological/Psychiatric Disorders in Diabetes • Depression • Anxiety • Eating Disorders

8. Depression in Diabetes

9. Symptoms of Major Depressive Disorder Common to Adults, Children, and Adolescents (DSM-IV) • Persistent sad or irritable mood • Loss of interest in activities once enjoyed • Significant change in appetite or body weight • Difficulty sleeping or oversleeping • Psychomotor agitation or retardation • Loss of energy • Feelings of worthlessness or inappropriate guilt • Difficulty concentrating • Recurrent thoughts of death or suicide • Five or more of these symptoms must persist for 2 or more weeks before a diagnosis of Major Depression is indicated.

10. Odds and Prevalence of Depression in 18 Controlled Studies 2.0 (1.8-2.2) The odds of depression were doubled in diabetics compared to controls. OR (95% CI) Depression prevalence (%) Non-diabetics Diabetics Anderson et al., 2001

11. Aetiology Depression in Diabetes? • Diabetes risk factor on top of known risk factors (e.g. gender, age, SES) • Combination of Psychosocial (‘hardship’) and Biological factors (e.g. HPA-axis, serotonine, cytokines)

12. Adverse effects of Depression • Suffering, reduced QoL • Associated with increased symptom reporting, poor self-care (Ciechanowski et al, 2003) • Associated with hyperglycemia (Lustman et al., 2000) and increased risk of micro and macrovascular complications (De Groot et., 2001; Abramson et al., 2001) • Increased health care use and costs (Black, 1999; Ciechanowski et al., 2000) and increased mortality in older type 2 patients (Rosenthal et al., 1998)

13. Depression Treatment in Diabetes • In principal the same as for non-diabetics • To date, only 2 RCT’s published • Anti-depressive medication (SSRI) in Type 1 diabetes more effective than placebo and trend towards improved glycaemic control (Lustman et al., 2000) • Psychotherapy (CBT) in type 2 diabetes patients more effective than control (education) with delayed glycaemic improvements (Lustman et al., 1998)

14. Depression is under detected • Diagnosis depression missed in 30 - 70% of the cases in primary and secondary care (Higgins, 1994; Penn et al., 1997) • Missed in ~ 50% of the cases in diabetes (Lustman, Harper, 1987) • Screening increases % detected en treated (Wells et al., 2000); first-time screening cost effective (Valenstein et al., 2001 )

15. General and Diabetes Specific Anxiety in Diabetes

16. General and Specific Anxiety • Prevalence General Anxiety Disorder (GAD) not elevated compared to general population (Popkin et al., 1988; Petrak et al., 2003) • Fear of complications • Fear of hypoglycamia • Fear of self-injecting – self-testing

17. Top 2 items diabetes-specific emotional distress in diabetes patients • Worries about the future and complications • Feeling worried or guilty when ‘off track’ with the diabetes regimen PAID-data: Polonsky et al., 1995; Welch et al, 1997; Snoek et al, 2000

18. Eating Disorders • Common among young diabetic girls (10-30%) (Jones et al., 2000) • Associated with poor metabolic control • (insulin omission) and • Ealier onset of complications (Rydall et al., 1997) • Increased mortality (Nielsen et al., 2002) • Eating disorders (Binge Eating) in type 2 ? (Kenardy et al., 2000)

19. Needs Assessment ? • Observations and Clinical Outcomes • Information from Significant Others • Questionnaires, screeners • Diagnostic questions/clinical interview

20. Psychological state not always obvious….

21. or ambiguous….

22. The case for monitoring emotional well-being using valid questionnaires • The sooner, the better (prognosis) • Detection rates are relatively low (Lustman et al, 1987; Mulrow et al., 1995; Katon et al., 2003) • Training HCP’s alone little effect (Thomson et al., 2000) • Monitoring has shown to be beneficial in diabetes (Pouwer et al., 2001)

23. Randomised Controlled Trial CONTROLGROUP: Standard diabetes care • Regular appointments with internist (3-4 per year) • At least two consultations with the Diabetes Nurse to discuss diabetes-related problems (interval: 6 months) INTERVENTION GROUP: • Standard diabetes care + Monitoring of emotional well-being (computerised assessment of W-BQ12 and discussion of scores with Diabetes Nurse (interval: 6 maanden)

24. Table 2— Primary outcome measures for the monitoring and standard care conditions General emotional well-beingscores (WPQ-12) for the monitoring and standard care conditions, at baseline and at follow-up Measure MonitoringStandard care Adjusted PES groupgroup difference Baseline 23.9 (22.8–25.0) 23.8 (22.1–25.6) Visit 2 24.2 (23.1–25.4) — Follow-up* 25.1 (24.4–25.8) 22.9 (21.8–23.9) 2.2 (0.9–3.5) 0.001 0.29 Patients in the monitoring group also had more favourable evaluation of the quality of diabetes care, in particular regarding the emotional support by the DNS (No effect on HbA1c possibly due to floor effect (HbA1c 7.7% in both groups) Data are means (95% CI). Means at follow-up and mean differences at follow-up were adjusted for * corresponding baseline scores or GWB at baseline using ANCOVA. Calculation of GWB: 12 - NWB + ENE + PWB.

25. Percentage of patients referred to medical psychologist increased in Monitoring group

26. Monitoring Instruments ? • ‘Screeners’ (generic) WHO-5 (well-being)1 WBQ-12, HADS, PHQ-9, CES-D (Depression) • Diabetes-specific tool Problem Areas In Diabetes (PAID: emotional distress, 20 items)2 1Bech P et al., 2003; Shea S et al., 2003; Lowe B et al., 2004 2Polonsky WH et al., 1995; Welch GW et al.,1997 Snoek FJ et al., 2000

27. WHO-5 Positive Well-being Index • On a scale of 0 (at no time) to 5 (all of the time) • Over the past 2 weeks: • I have felt cheerful and in good spirit • I have felt calm and relaxed • I have felt active and vigorous • I woke up feeling fresh and rested • My daily life has been filled with things that interest me http://www.who-5.org

28. Algorithm WHO-5 screening(0-100) WHO-5 score < 50  50 Not OK ‘OK’ Action Needs Assessment Routine Care advice Counseling advice

29. Timing of Assessment • First consultation • Periodic consultation (3-monthly) • Annual Review

30. St Vincent Declaration Action programme – Guidelines for Encouraging Psychological Well-being (1995) “Well-being can be improved by improving communication, protecting patients’ self-esteem and responding to and acknowledging the different needs of the individual”…

31. Implications • Further validation of short screening/monitoring instruments (cross-cultural) • Effectiveness (implementation) studies • Training diabetes health care teams how to assess and address psychological needs • International standard for psychosocial care in diabetes to guide practice

32. Thank you