Susan Munroe, CEO, FfT Nicola Witcombe, IRCT (Torture Journal) Freedom from Torture Susan Munroe, CEO, FfT Nicola Witcombe, IRCT (Torture Journal)

Torture Journal Vol.26(2) Measuring change and changing measures: The development of a torture survivor specific measure of change by Rebecca Horn and Andy Keefe

The Freedom from Torture (FfT) Measure of Clinical Change and Outcome (MOCCO): Development and Usage About FfT Why did FfT need to measure outcomes and develop their own tool? What is MOCCO? 20 questions, scores Key features of development Challenges What does MOCCO tell us? What next for MOCCO?

About Freedom from Torture UK-wide 5 centres Largest torture rehabilitation centre in UK £8M turnover £20M by 2025 150 staff plus + 200 volunteers 1300 survivors of torture / year

Why do FfT need to measure outcomes? Funding Quality Assurance Governance Regulation

Why did FfT need to develop our own tool? Buy-in from staff Nothing torture-specific ’off the shelf’

What is MOCCO? Measurement of Clinical Change & Outcome (MOCCO) Client-rated outcome tool Signs of distress and wellbeing - 20 questions Positive & Negative impact of external factors Quality of life in general

20 questions (1) 1. Forgetting to do things 2. Feeling very sad How much have the following things affected you over the last ONE WEEK? 1. Forgetting to do things 2. Feeling very sad 3. Unwanted memories 4. Feeling tense, anxious or nervous 5. Difficulty with sleeping 6. Nightmares

20 Questions (2) 7. Realising or being told by other people that you have done something you cannot remember. 8. Feeling as if you were actually back in the distressing situation 9. Do distressing memories stop you from doing ordinary things? 10. Do you feel hopeless?

20 Questions (3) 11. Do you feel that your soul is damaged? 12. Do you lose your temper over small things? 13. Do you feel ashamed? 14. Has talking with people felt like too much for you? 15. Have you been able to carry on with ordinary things when problems occur?

20 questions (4) 16. Have you felt lonely? 17. Have you lost interest in things? 18. Have you made plans to end your life? 19. Have your feelings gone dead? 20. How much do you trust other people?

MOCCO scores Questions scored 0-3 Highest (worst) score 60 Lowest (best) score 0 minus (-) or plus (+) change in score represents improvement or deterioration Applied on admission, 3 months, 6 months 12 months, then annually

Developing an outcome tool Jaranson JM, Quiroga J. Evaluating the services of torture rehabilitation programmes: History and recommendations. Torture. 2011;21(2):98-140. Mc Farlane CS, Kaplan I. Evidence-based psychological interventions for adults of torture and trauma: A 30-year review. Transcult Psychiatry. 2012 Jul;49(3-4):539-67. Patel N, Kellezi B, Williams C de C A. Psychological, social and welfare interventions for psychological health and well-being of torture survivors. Cochrane Database of Systematic Reviews 2014

What features are likely to help understand effectiveness? How achieved Consider context within which survivors live Includes a section on clients’ wellbeing. Can record in brief what has the greatest impact (positive/negative) Broad range of outcomes/those which have the greatest meaning for survivor Outcomes included identified through ongoing discussion with clinicians and clients/what had greatest relevance for clients Clinicians and other practitioners should be involved Yes – concerning tool as well as how it was to be used

What features are likely to help understand effectiveness? How achieved Translators should be involved in the development of questions Process of translation and back-translation Sample size should be large enough to make comparisons where population heterogenous Entire population at FfT’s 5 centres of adults engaged in individual therapy. Outcomes should be studied over a sufficiently long period MOCO used throughout contact with FfT

Challenges of developing our own tool Expensive Time-consuming Translation Testing - pilot

Challenges in using MOCCO Client Database Staff resistance Staff training

What does MOCCO tell us?

% Modality Sessions N=57284 sessions with recorded modality

Mean Centre Effect

OT Difference, by Torture Forms

What next for MOCCO? Change frequency of assessment Improve clinician compliance (too many empty data fields and infrequent assessment) External validation Begin to use data as a performance measure for service development decision making