1. School of Health Studies, University of Bradford Self help materials for disfigurement: A systematic review Rob Newell Lucy Ziegler

2. School of Health Studies, University of Bradford Introduction Visible difference affects at least 250000 people Visibly different people are offered discrimination by others Social anxiety and avoidance are major sources of handicap Few studies of effects or interventions

3. School of Health Studies, University of Bradford Rationale for review Little psychological intervention Large numbers Self-help is common Self-help offers access to expertise Self-help is relied on by NHS If effective, can reach large numbers

4. School of Health Studies, University of Bradford Definition of self-help Intervention where the sole or major approach is through bibliotherapy or other written, spoken or viewed materials

5. School of Health Studies, University of Bradford Method

6. School of Health Studies, University of Bradford Search question Do self-help materials in current use lead to an improvement in psychological wellbeing for people with disfigurement?

7. School of Health Studies, University of Bradford Search strategy Search terms Disfigurement, altered appearance, self-help, patient empowerment, leaflet, intervention, patient information, adjustment, intervention Databases CDSR;DARE; PsychINFO; Ingenta, Zetoc, LILACS; Medline; ADOLEC; the National Research Register; HMIC; NeLH; CINAHL; Embase

8. School of Health Studies, University of Bradford Inclusion/exclusion criteria Inclusion criteria – Published in English Language – Wholly or principally investigates a self-help intervention – Wholly or principally investigates people with a visible difference – Conforms to level of evidence hierarchy

9. School of Health Studies, University of Bradford Inclusion/exclusion criteria Exclusion criteria – Not published in English language – Does not or only tangentially investigates a self-help intervention – Does not or only tangentially investigates people with a visible difference – Solely investigates change in knowledge – Solely investigates people with an eating disorder – Solely investigates people with body dysmorphic disorder – Consists solely of personal opinion

10. School of Health Studies, University of Bradford Quality ratings 1a Evidence obtained from meta-analysis of randomised controlled trials 1b Evidence obtained from at least one randomised controlled trial 2a Evidence obtained from at least one well designed controlled study 2b Evidence obtained from at least one other type of well designed quasi-experimental study 3 Evidence obtained from well designed non experimental descriptive studies, such as comparative studies, correlation studies and case control studies 4 Evidence obtained from expert committee reports or opinions and / or clinical experiences of respected authorities

11. School of Health Studies, University of Bradford Relevance ratings 1 - unmediated self-help/wholly involving visible difference 2 - unmediated self-help/mainly involving visible difference OR mediated self- help/wholly involving visible difference 3 - mediated self-help/mainly involving visible difference

12. School of Health Studies, University of Bradford Results – papers retrieved 74 papers identified 45 judged irrelevant by review of title 29 abstracts reviewed 13 papers obtained 6 papers included

13. School of Health Studies, University of Bradford Results – papers reviewed Robinson et al (1996) 2b/1 Cash & Lavallee (1997) 2b/2 Clarke (1999) 4/1 Newell & Clarke (2000) 1B/1 Clarke (2001) 3/1 Strachan & Cash (2002) 1b/2

14. School of Health Studies, University of Bradford Results – equivocal papers Feigenbaum (1981) – excluded Cash & Lavallee (1997) - included Strachan & Cash (2002) - included

15. School of Health Studies, University of Bradford Results – papers entirely concerned with visible difference

16. School of Health Studies, University of Bradford Robinson et al (1996) 104 facially disfigured people entered treatment, 23 lost at first follow-up, 19 lost at second follow-up. 64 completed Rx and were analysed. Uncontrolled before/after study Significant decrease in anxiety at both FU points. No decrease in depression. Significant decrease in social avoidance.

17. School of Health Studies, University of Bradford Clarke 1999 Unstructured review paper Notes the inclusion of CBT elements as well as SST in changing faces workshops

18. School of Health Studies, University of Bradford Newell & Clarke (2000) 106 disfigured people. Randomised to booklet or no treatment. Followed up at 3 months. 34 lost at FU. RCT Significant decrease in anxiety, depression & social avoidance.

19. School of Health Studies, University of Bradford Clarke (2001) Descriptive account of changing faces self- help booklet series. No initial n given (% only). n = 70 for respondents. Return rate for FU = 30%. Survey. 87% found booklets easy to understand. 73% helpful, 69% ‘effective’ –stimulated people to try out tactics suggested.

20. School of Health Studies, University of Bradford Results – papers primarily concerned with visible difference

21. School of Health Studies, University of Bradford Cash & Levallee (1997) 23 females - group contact plus self-help book; 13 females and 3 males - minimal contact plus self-help booklet. Before/after group comparative study. Minimal contact highly significant pre-post. No difference between conditions on measures. Greater % (75) in minimal contact group ‘functionally improved’.

22. School of Health Studies, University of Bradford Strachan & Cash (2002) 86 women and 3 men, almost all with eating disorders. Randomised to 2 conditions. 52% dropout at FU. RCT. ‘Component control’. Significant improvement over time in both groups on all but one measure. No difference between groups. After 8 weeks, the group as a whole was rated at up to 43% ‘functionally recovered’

23. School of Health Studies, University of Bradford Discussion Few studies Considerable activity 2 RCTs Modest evidence of efficacy in these or other studies Robinson et al (1996), Cash & Levallee (1997), Newell & Clarke (2000), Strachan & Cash (2002) provide evidence for tentative support for CBT via self help in visible difference.

24. School of Health Studies, University of Bradford Recommendations How may the psychosocial needs of disfigured people best be met? What advice can we offer people with regard to self help? Can the work of patient-led support groups be supported? What is required in the future?

25. School of Health Studies, University of Bradford Next steps Search, retrieval & grading of grey literature – Final agreement of grading structure – Contact with each major self help group – Retrieval of all self help materials relevant to visible difference – Grading of materials

26. School of Health Studies, University of Bradford Next steps – Contact with a representative sample of all head & neck, plastic surgery, dermatology departments – Audit of self help materials used – Grading/Comparison with grading