1. CFS/ME BACME Slides March 2018 DJT
The Therapy Outcome Measure: a new clinician-rating scale for CFS/ME
Deborah Taylor, Louisa Davenport and Edward Nottingham
March BACME Conference
Liverpool

2. CFS/ME BACME Slides March 2018 DJT
Aims of Workshop
To reflect upon outcome collection in changing times- what do we measure?
To introduce and discuss the “Therapy Outcome Measure” for CFS/ME
To consider the effectiveness, training and procedure if services wish to consider adopting the measure for themselves.
Since the end of the NOD, all services are required to decide upon their own outcome collection (usually PROMS), patient satisfaction ratings and clinical impression scales (CROM) Developed from the 1980s as an alternative to standardised assessment to include social and emotional issues and other methods for assessing the outcome of interventions.
We have developed the rating for CFS/ME to cover the broad range of function and because the scales for pain, mulitifactorial conditions or the basic scale did not give sufficient detail to represent the levels we observe clinically
Developed expanded codes for specific disorders and further editions of the book have presented adapted scales and case studies of implementation
Reliability:

3. CFS/ME BACME Slides March 2018 DJT
Workshop Overview.
We will introduce the measure and use case-studies to test out the competence of the descriptors, and ease of scoring
We will report back how its used and the outcome data from a couple of test sites
We will explain the process, if you want to find out more about using this CROM.
This is not training in the “TOM” per se!

4. CFS/ME BACME Slides March 2018 DJT
Why did we chose TOMS?
It can potentially capture the functional changes that patients report.
Clinicians make judgements on clinical improvement! A therapist-rated measure captures changes that patients maybe don’t recognise themselves (pre & post)
Quick, simple, already approved by our Trust and all clinical staff can use it.
IT department can report on it

5. Process and Reliability, validity and Benchmarking
CFS/ME BACME Slides March 2018 DJT
Process and Reliability, validity and Benchmarking
LYPFT Specialist Services teams trained by TOMs author (Prof. Pam Enderby) in July 2012 and NICPM adopt measure of “basic scale”
Introduced in CFS/ME Out Patients 2014 and been developing new dataset to support rating and validity.
Regular rating meetings (6 weekly) to improve inter-rater reliability) or after formulation in MDT.
Data collection
4 scores (plus optional carer wellbeing)
Pre and post intervention Minimum.
(Of course more frequent or interim measure also possible)
Ordinal Scale 1….2….3….4….5 (with 0.5 ) “best fit”

6. CFS/ME BACME Slides March 2018 DJT
Benefits
Measure specifically adapted for use with CFS patients
Particularly beneficial for individuals with multiple co-morbidities - impairment may not always be improved but participation and well-being can be.
Can be used in conjunction with other measures to support commissioning
Collective data could be used for other purposes – e.g. for stratification by severity and to consider if those with more severe impairment have different/similar improvement levels with the same therapy
Easily implemented after initial training and data set can be used to support staff training
Can be used by a multi-professional team
Easy and quick to score which makes it achievable in a team with limited resources. Inter-rater meetings in MDT

7. CFS/ME BACME Slides March 2018 DJT
HMHT outcomes
n=33
IMPROVED
NO CHANGE
REDUCED SCORE
AVERAGE IMPROVEMENT
IMPAIRMENT
64%
33%
3% (n=1)
0.53
ACTIVITY
55%
Rounded up so doesn’t =100%
42%
0.41
PARTICIPAT.
70%
27%
3% (n=1)
0.58
WELLBEING
88%
12%
0% (n=1)
0.86

8. CFS/ME BACME Slides March 2018 DJT
TOM – Impairment

9. What is the Therapy Outcome Measure (TOM) ?
CFS/ME BACME Slides March 2018 DJT
What is the Therapy Outcome Measure (TOM) ?
Based on WHOs (2001) International Classification of Functioning (ICF)
The clinician rates the patient on 4 scales:
Impairment (Dysfunction from pathology/ the severity of the presentation)
Activity (how the client looks after themselves and can do activities; functional performance)
Participation (their involvement in society and with others)
Wellbeing (distress/satisfaction with condition
Optional score for carer’s wellbeing

10. Case Study Example “Mary”
CFS/ME BACME Slides March 2018 DJT
Case Study Example “Mary”
48 year old female
Diagnosis of severe CFS/ME (2000)
Married with 2 children and texts husband several times daily
Previously Senior management role
and Socially active
Regular attendance at gym
Previously of good health and Fit
Severe levels of fatigue
Body pain, constant headaches
Highly sensitive to light, sound, touch
High anxiety levels and avoids conversation
Low mood/depression?
Poor concentration - constant “brain fog” and Poor dietary intake (BMI 16)
Unable to feed herself. Requires staff to support with eating and drinking
Bed bound apart from transfers to commode placed next to bed
Independent with toileting but assistance required with clothing
Limited interaction with staff
Unable to tolerate hands/face washing
TOM Rating at Admission and Discharge
Impairment
Activity
Participation
Wellbeing

11. Electronic record of Pre and Post Scores for “Mary”
CFS/ME BACME Slides March 2018 DJT
Electronic record of Pre and Post Scores for “Mary”

12. TOM Score and qualifiers…
CFS/ME BACME Slides March 2018 DJT
TOM Score and qualifiers…

13. CFS/ME BACME Slides March 2018 DJT
To start Using TOM…. Training and Use of Manual TOMS Basic / Core Scale or specific dataset Inter Rating reliability 10 x Cases min. Means of recording scores and analysing change

14. CFS/ME BACME Slides March 2018 DJT
Considerations
At present we score the TOM as the patient presents at discharge but make a note if external factors may have impacted this score – consider Interim score
Similarly, if a patient fails to attend (DNA) their last appointment, do you score the discharge TOM? – and so score the patient on how they presented when last seen to maintain evidence of the value of input
Resources for recording and analysing scores, but a mid-way score could be a solution for the above issues
Record data on a spreadsheet manually which could be improved by an IT package – though this will depend on Trust resources. Put into SPSS?

15. CFS/ME BACME Slides March 2018 DJT
With thanks to
Ria Lonsdale, Specialist Occupational Therapist South Tees CFS Service
Consultation with Patient Volunteers in Leeds
Dr Hiroko Akagi (Retired)
LYPFT Trust/ AHP Leads

16. Questions and Thank you!
CFS/ME BACME Slides March 2018 DJT
Questions and Thank you!
References
Enderby, P. and John, A. (2015) Therapy Outcome Measures for rehabilitation Professionals. Surrey, J&R Press Ltd.
WHOs International Classification of Functioning (ICF)
accessed 12/03/18