Providing information /psycho-education: What works?

1. Providing information /psycho-education: What works? Eutopa, Amsterdam, September 2008 Professor Graham Turpin Clinical Psychology Unit, University of Sheffield g.turpin@shef.ac.uk

2. Aims of today’s talk: • Why provide information? • Three RCTs assessing the impact of information • Implications for clinical practice and guidelines development?

3. Draft guidelines Recommendations*: 10 A supportive context is offered that consists of: • Offering a listening ear, support and solace and being open to the immediate practical needs of those affected, • Offering factual and up-to-date information about the shocking event, • Mobilising social support from their own social surroundings’ • Facilitating reuniting with people closest to them and keeping families together, • Reassuring those affected who display normal stress reactions. 11 Information is offered to all those effected. Information should consist of: • A reassuring explanation of normal reactions. • Saying when to seek help, • Advising those affected to tackle the daily routine. 12 The study group does not recommend offering preventive psycho- education. * These recommendations strongly endorsed by pre-meeting survey.

4. Introduction • Many people will experience some form of traumatic event within their lives. • Effective psychological interventions have been developed for those suffering from the chronic reactions following exposure to trauma. • However, these are costly and limited by restricted access to psychological therapies • Can providing information/ psycho-education reduce the prevalence of people presenting with chronic reactions following exposure to trauma?

5. Why provide information? • Positive reasons: • Information: some clients will request information about psychological sequelae and best coping? • Prevention: information might promote positive coping and decrease the likelihood of development of chronic PTSD? (NICE, 2005: Implementation guidelines - 150k cases at a cost of £47/ €60 m per annum). • Self-help: more extensive self-help materials could provide the basis of early intervention for people with acute stress disorder etc. Early CBT interventions (e.g. Bisson et al. 2005) might be implemented through self-help delivery? • Promoting appropriate help seeking: “self-monitoring” during watchful waiting?

6. Why provide information? • Negative reasons: • Information: some people may not wish information and the possibility of sensitisation should be considered? • Could be seen as promoting the medicalisation of ordinary distress. • Disruption of natural recovery processes and promoting medical intervention at the expense of social/community support? • Promoting inappropriate help seeking and drain on limited resources.

7. What do we know already? Early interventions? Supported self-help? Self-help and mental health promotion? Information - practical vs therapeutic?

8. Early intervention and PTSD • One off sessions of individual psychological debriefing have not resulted in reductions in PTSD symptoms (Sijbrandij et al., 2006), may even slow recovery. • Early CBT interventions (e.g. Bisson et al. 2005) have shown promising results, especially when targeted at those at high risk of developing PTSD. • Nevertheless, these still require access to scant psychological therapy resources.

9. Self-help and information • NICE guidelines recommend watchful waiting • Monitoring of symptoms is also a component of many stepped care programmes for depression and anxiety • Guided self-help information has been shown to be effective in dealing with mild symptoms of anxiety and depression in primary care. Could it be applied to acute stress reactions and subsequent PTSD? • Moreover, the NHS in the UK generally promotes the provision of information and self-help booklets. • Despite such information being available within Accident & Emergency Departments, no studies have been conducted assessing its efficacy in preventing subsequent chronic PTSD.

10. Self-help and PTSD • The information that does exist is inconclusive: • Ehlers et al (2003) • RCT of Cognitive Therapy (CT), SH and repeated assessments (RA) • SH group showed improvement in symptoms, but not significantly greater than RA group • O’Donnell et al (2003) • SH versus “management as usual” • Trend towards improved quality of life, increased perceived functioning at work and reduced alcohol consumption in SH group • Robertson et al (2002) • Evaluation of patient satisfaction with a SH leaflet for trauma survivors • Patients reported high levels of satisfaction with all aspects of the leaflet

11. Three RCTs on the effectiveness of information provision: Acknowledgements: • Alison Bugg • Maria Downs • Suzanne Mason • Alison Rowlands • Cathy Scholes

12. General aims of the 3 RCTs To explore whether providing self-help help information to patients attending Accident & Emergency would result in reductions in symptoms of: • PTSD • Anxiety & • Depression and improvements in: • Quality of life

13. Specific aims of the 3 RCTs Study 1: Undifferentiated sample - information leaflet Turpin et al. Br J Psychiatry, 2005, 187, 76 - 82 Study 2: Screened for ASD - Self-help orientated information booklet Scholes et al.,BRAT, 2008, 45, 2527 – 2536. Study 3: Screened for ASD - Self-help orientated information booklet, plus writing therapy. Bugg et al., BRAT, under revision.

14. Methods General design principles: • Randomised Control Trials • Studies adopted a between groups, repeated measures design over time - up to 6 months follow up post-injury. Baseline/ 4-6 weeks/6 mo post injury. • Major outcome variable: PTSD symptoms assessed by self-report (PDS). Secondary outcomes: anxiety, depression (HADS) and QoL (WHO). • A small qualitative component was also used to look at what the patients thought about the information/interventions provided.

15. Methods Participants • Recruited from local Accident & Emergency Unit • Inclusion Criteria: RTAs, Assaults & Occupational Injuries, aged 16-65 years, English speaking. • Study 1 • 2,818 patients invited to participate • Total sample = 142 (Intervention = 75, Control = 67) • Study 2 • 1934 patients invited to participate but screened • Total sample = 270 (HI = 89; HC = 93; LC = 88) Study 3 • Study 3 • 1454 patients invited to participate but screened • Total sample = 148 (SH & W = 72; SH = 76) • Note relatively low take up - 20% allowing for screening

16. Methods Procedures • Participants approached 1 week after attendance at A & E to participate. Baseline questionnaires also sent. • Studies 2 & 3 - screening with ASD > 50 • On recruitment, participants randomly assigned to groups. • Self-help interventions 4 - 6 weeks after attendance at A & E. • For writing task, post intervention assessment 3 months post injury. • Assessments also sent to control group (s). • 6 months post-injury follow-ups.

17. Interventions: Information leaflet Study 1 • Based on booklet developed by the Department of Psychology, Harrogate District Hospital. • Consisted of 550 words and 8 pages, and a Flesch-Kincaid reading age of 8 years. • Education/Normalisation regarding: • Common physiological & psychological reactions to traumatic injury. • Behavioural reactions • Advice regarding • Non-avoidance • Utilization of emotional support

18. Interventions: Self-Help Booklet* Study 2 • Information sheet replaced by more intensive self-help booklet (O’Donnell and Creamer, University of Melbourne). • 31 pages long - Flesch Kincaid reading age 9 and reading ease of 56. • Booklet delivered earlier - under 4 vs 6 weeks. • Emphasized the need to expose to trauma reminders -frequently and for long enough periods. *Both leaflet and booklet can be downloaded from: http://www.shef.ac.uk/clinicalpsychology/research

19. Interventions: Writing task Study 3 • Booklet delivered either alone or in conjunction with the “Pennebaker Writing Paradigm” (Pennebaker, 1997; Psychological Science) • Patients in the intervention group received 1 face-to-face session where the “Writing Paradigm” is introduced. • Two follow-up telephone sessions around the “Writing paradigm”

20. Results - samples A synthesis of the three studies: • Low recruitment rates (about 20%) but typical of trauma studies. • Some differences in responders vs non-responders - younger, mail and assaults. • Few baseline differences, although large differences between high and low risk samples in studies 2 and 3 • Sample consisted of road traffic accidents, assaults and industrial accidents.

21. Results - interventions A synthesis of the three studies: • Study 1: • Intervention: post intervention improvement greater for control group but no difference at follow up for PDS. • Intervention group showed greater depression at follow up. • Studies 2 and 3: • Recovery effects in all groups but no differences according to self-help or self-help plus writing intervention when compared to controls

22. Results - acceptability A synthesis of the three studies: • All studies: • Feedback from participants showed high levels of satisfaction with both the information leaflet and the more extensive self-help booklet. • Normalisation and coping strategies valued. • Participants reported reading the information and also trying out advice and suggested activities. • Writing task was acceptable and performed by majority of participants. Rated as helpful.

23. Type of Injury - Study 1 • Responders • Assaults - 67 • Occupational Injuries - 103 • RTAs - 121 • Non-responders • Assaults - 753 • Occupational Injuries - 1074 • RTAs - 700

24. Results :Post interventionPTSD (caseness) - Study 1 Almost significant differences between groups in relation to caseness on PDS (Fishers Exact , p =0.06). • Control group 50% reduction • Intervention group 20% reduction

25. Results: follow-up - Study 1PTSD caseness No significant differences between the groups

26. Results: Post interventionSymptom severity - Study 1 PDS • Significant reductions over time • No significant differences between groups Anxiety • Significant reductions over time • No significant differences between groups Depression • Significant reductions over time Almost significant difference (p=0.054) between groups: intervention group more depressed.

27. Results: Follow-upSymptom severity - Study 1 PDS • Significant reductions over time • No significant differences between groups Anxiety • Significant reductions over time • No significant differences between groups Depression • Significant reductions over time Significantly greater reductions for control group [F (1,98) = 3.14, p <0.05]

28. Results: Effects of the intervention - Study 2 Comparisons of HI vs HC Analyses of completer sample Symptom severity: MANOVA on improvement scores for PDS, HADS-A and HADS-D. No significant group difference found at post-intervention or follow-up (Post-intervention: Wilks’ Lambda=0.98, F(3,110)= 0.99, ns; Follow-up: Wilks’ Lambda=0.96, F(3,85)= 1.17, ns) Repeated Measures ANOVAs: Significant main effect for time in all cases (p<0.001), but nosignificant main effect for group or group x time interactions (all p>0.46) Caseness: No significant differences in PTSD, anxiety or depression at post-intervention or follow-up Quality of life: No significant differences

30. Results: Effects of the intervention - Study 3 Comparisons of WI vs I Analyses of completer sample Symptom severity: MANOVA on improvement scores for PDS, HADS-A and HADS-D. No significant group difference found at post-intervention or follow-up. Repeated Measures ANOVAs: Significant main effect for time in all cases (p<0.001), but nosignificant main effect for group or group x time interactions. Caseness: No significant differences in PTSD, anxiety or depression at post-intervention or follow-up Quality of life: No significant differences

31. Results: Booklet ratings - Study 1 • 8 patients choose not to read the booklet • Out of 75 patients who did, 66% rated it useful. • 38% gave further qualitative feedback: • 47% valued the information and advice • 32% valued the normalisation of responses

32. Results: Patient perception of the self-help booklet - Study 2

33. Results: Booklet and “writing” ratings - Study 3 • High compliance with booklet: WI 90%; I 89% • More in the WI group read it carefully (52% vs 25%) • Info on trauma: 72% (I) & 68% (WI) - moderately/very/extremely useful • Coping strategies: 75% (I) & 68% (WI) - moderately/very/extremely useful • 71% of the Writing Group rated the writing as very/extremely useful. • Only 2 (6.5%) participants found it too distressing/emotional.

34. Discussion - Study 1 • Rates of PTSD for sample (31%) consistent with traumatised groups and other local research. • Results in opposite direction to that hypothesised: trend for caseness for PDS to be lower in control, with lower levels of depression • Although relatively high symptom severity , the majority of patients did not meet criteria for PTSD. This may have reduced statistical power. However, based on small effect size of .27, a total sample of 120 would be sufficient for .80 power at an alpha level of 0.05. • Lack of significant gains for the self-help group consistent with prior research.

35. Discussion - Study 1 Other factors: • Many A&E attenders had minor injuries and not exposed to trauma. • Information sheet may have been ineffective as a tool. • Patients may not have complied with advice given. • Information sheet may have been delivered too late. • Intervention group may have been more likely to report symptoms following psycho-education. • Reliance on self-report assessment

36. Discussion - Study 2 • No evidence obtained to support beneficial effects of providing self-help information as an early intervention for traumatic injury survivors with symptoms of ASD • Participants’ subjective ratings of the usefulness of the booklet were very high • ASDS screening measure may be an effective early discriminator of long-term psychological difficulties in this population

37. Discussion - Study 2 Strengths of the study • Large sample size • Focus on highly symptomatic group • Use of ‘optimal’ self-help booklet Limitations • Reliance on self-report outcome measures • Fairly low initial response rate and relatively high attrition • Lack of a ‘no assessment’ control group

38. Discussion - Study 3 • No evidence obtained to support beneficial effects of providing either self-help information or in combination to “writing therapy” as an early intervention for traumatic injury survivors with symptoms of ASD • Participants’ subjective ratings of the usefulness of the booklet and writing task were very high. • Was the “dose” of “writing” sufficient for PTSD?

39. Discussion Clinical implications • Self-help may not be effective in addition to natural recovery • But self-help information valued by majority but not all attenders. • May have other benefits not captured by outcome measures? • Early self-help interventions may not be directly effective; but possible important role of self-help information in ‘watchful waiting’? NICE estimate of 10 min follow-up appointment: £636k • Potential usefulness of ASDS as screening tool • Need to consider more potent interventions such as brief CBT (Bisson et al, 2005).

40. Discussion Future research • Ways of enhancing effectiveness of self-help approaches - assisted self-help. • Computerised self-help and Internet-therapy? • Understanding the discrepancy between the subjective usefulness of self-help interventions and objective outcome? • Effects of repeated assessments in aiding recovery?

41. Recommendations: 10 A supportive context is offered that consists of: Offering a listening ear, support and solace and being open to the immediate practical needs of those affected, Offering factual and up-to-date information about the shocking event, Mobilising social support from their own social surroundings’ Facilitating reuniting with people closest to them and keeping families together, Reassuring those affected who display normal stress reactions. Relevance of the studies: Studies demonstrate the perceived usefulness of information provision Need to be careful about sensitisation? However, context was individual trauma and not a disaster situation Practical information and social disruption less relevant Implications for guidelines

42. Recommendations: 11 Information is offered to all those effected. Information should consist of: A reassuring explanation of normal reactions. Saying when to seek help, Advising those affected to tackle the daily routine. 12 The study group does not recommend offering preventive psycho- education. Relevance of the studies: How much information should be provided and for what purpose? A booklet maybe sufficient for normalisation and advice on help seeking? Should we be attempting to introduce more effective forms of psycho-education for target groups? Supported self-help and internet access? Implications for guidelines

43. Thank you