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HOW TO ASSESS THE PSYCHOLOGICAL NEEDS OF PEOPLE WITH DIABETES – Taking DAWN into action Frank Snoek, PhD Professor of Medical Psychology VU University.

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Presentation on theme: "HOW TO ASSESS THE PSYCHOLOGICAL NEEDS OF PEOPLE WITH DIABETES – Taking DAWN into action Frank Snoek, PhD Professor of Medical Psychology VU University."— Presentation transcript:

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

2 This talk What are the needs of people with diabetes? How can these needs be assessed? Practice implications

3 Human Needs Hierarchy of needs: from Physiological needs to Self-actualisation (Maslow, 1954) Two basic needs: Health and Autonomy (Self-esteem and respect) (Doyal and Gough,1991)

4 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

5 Illness-induced lifestyle disruptions: Illness Intrusiveness Diabetes Psychological Well-being Devins et al., 1994; 2001 Illness Intrusiveness

6 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

7 Living with diabetes is a balancing act Life stresses Uplifts

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

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

10 Psychological/Psychiatric Disorders in Diabetes Depression Anxiety Eating Disorders

11 Depression in Diabetes

12 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.

13 Depression is a common disorder (5-10% point prevalence in general population) Risk factors: Socio-demographic and economic: female, low SES, urban areas Psycho-social: life events, losses, neglect and abuse in youth, lack of social support, personality Associated with: obesity, smoking, alcohol abuse, physical inactivity

14 Prevalence of Depression in Diabetes Meta-analysis of 39 Studies Depression prevalence is Higher in women vs. men Higher in clinic vs. community samples Higher when assessed via self-report vs. diagnostic methods Similar in patients with type 1 vs. type 2 diabetes Depression prevalence is Higher in women vs. men Higher in clinic vs. community samples Higher when assessed via self-report vs. diagnostic methods Similar in patients with type 1 vs. type 2 diabetes 11% Major Depression Nondepressed 69% Significant Symptoms 31.0% Anderson et al., 2001

15 2.0 ( ) OR (95% CI) Depression prevalence (%) Non-diabeticsDiabetics The odds of depression were doubled in diabetics compared to controls. Anderson et al., 2001 Odds and Prevalence of Depression in 18 Controlled Studies

16 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)

17 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)

18 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)

19 Depression is under detected Diagnosis depression missed in % 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 )


21 General and Diabetes Specific Anxiety in Diabetes

22 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

23 Fear of Self-injecting/Self-testing (Diabetes-Fear of Injecting and Self-testing Questionnaire; D- FISQ) Uncommon (< 1% of insulin-treated patients) but severe (burden, glycaemic control) Painfulness mentioned as most important factor FSI and FST coincide in 40% of cases Co-morbid psychological disorders (depression and other phobias) Fear of hypoglycaemia Snoek et al., 1994; Mollema et al., 2000; Mollema et al, 2001

24 Fear of Hypoglycaemia (Hypoglycaemia Survey, HFS) Prevalence ? Increased risk with hypoglycaemia ‘unawareness’ Avoidance behaviours (active and passive) Adverse effects on glycaemic control Gonder-Frederick et al., 1997; Marrero et al., 1997

25 Normal or abnormal fear? ACTUAL RISK FEAR high low ‘denial’ ‘phobia’ normal

26 Fear of Complications Prevalence unknown High trait anxiety and depression risk factors Adverse effects on glycaemic control (overcorrecting, hypo’s) Hendricks & Hendricks, 1988; Karlson,Agardh,1997; Zettler et al., 1995

27 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

28 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)

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

30 Psychological state not always obvious ….

31 or ambiguous….

32 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)

33 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)

34 Table 2— Primary outcome measures for the monitoring and standard care conditions 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. General emotional well-being scores (WPQ-12) for the monitoring and standard care conditions, at baseline and at follow-up Measure Monitoring Standard care Adjusted P ES group group difference Baseline 23.9 (22.8–25.0) 23.8 (22.1–25.6) Visit (23.1–25.4) — Follow-up* 25.1 (24.4–25.8) 22.9 (21.8–23.9) 2.2 (0.9–3.5) 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 HbA 1c possibly due to floor effect (HbA1c 7.7% in both groups)

35 Percentage of patients referred to medical psychologist increased in Monitoring group

36 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 1 Bech P et al., 2003; Shea S et al., 2003; Lowe B et al., Polonsky WH et al., 1995; Welch GW et al.,1997 Snoek FJ et al., 2000

37 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

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

39 Timing of Assessment First consultation Periodic consultation (3-monthly) Annual Review

40 In conlcusion Diabetes adds stress to people’s lives Diabetes can interfere with life-goals and ambitions Diabetes challenges pre-existing psychological vulnerabilities

41 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”…

42 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

43 Thank you

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