Self help materials for disfigurement: A systematic review

1
Self help materials for disfigurement A
systematic review

• Rob Newell
• Lucy Ziegler

2
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
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
Definition of self-help

• Intervention where the sole or major approach is
  through bibliotherapy or other written, spoken or
  viewed materials

5
Method
6
Search question

• Do self-help materials in current use lead to an
  improvement in psychological wellbeing for people
  with disfigurement?

7
Search strategy

• Search terms
• Disfigurement, altered appearance, self-help,
  patient empowerment, leaflet, intervention,
  patient information, adjustment, intervention
• Databases
• CDSRDARE PsychINFO Ingenta, Zetoc, LILACS
  Medline ADOLEC the National Research Register
  HMIC NeLH CINAHL Embase

8
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
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
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
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
Results papers retrieved

• 74 papers identified
• 45 judged irrelevant by review of title
• 29 abstracts reviewed
• 13 papers obtained
• 6 papers included

13
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
Results equivocal papers

• Feigenbaum (1981) excluded
• Cash Lavallee (1997) - included
• Strachan Cash (2002) - included

15
Results papers entirely concerned with visible
difference
16
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
Clarke 1999

• Unstructured review paper
• Notes the inclusion of CBT elements as well as
  SST in changing faces workshops

18
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
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
Results papers primarily concerned with visible
difference
21
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
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
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
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
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
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