1. Therapy Outcome Measure
Workshop.
Pam Enderby
Alex John

2. Therapy Outcome Measures
Background
Context
Purpose
Use of the tool

3. Data, Information, Learning, =Improvement

4. Data to support quality assurance3
Donabedian (1980)
Process
Structure
Outcome
Staff grades, costs of assessment tools,
quality of accommodation
No. of interventions provided; no of patients seen
Changes in patients communication, wellbeing
Clearly when we are trying to assess the value of a service and quality assure, we need to use all kinds of information to analyse and understand services.
Donabedian (1980) was one of the first – he talked about structure process and outcome

5. Outcomes
‘address the effects, not the process, of particular interventions’ (Hesketh & Sage, 1999)
“ results or visible effects of interventions…. forms part of the quality cycle….. provides information on the impact of interventions….
identifies the effectiveness of practices….” (Enderby, John & Petheram, 2006)
What all these have in common, is the understanding of what we mean by outcomes:

6. How can we improve our therapy?
Reflection
Learning from research
Learning from others
Learning from experience
Data collection

7. Why has outcome measurement got to the top of the agenda?
Increasing demands on the health service
Knowledge of variation in provision
Financial constraints

8. NHS Atlas of variation February 2016
NHS patients are suffering from "unwarranted variation" in their care, which cannot be linked to levels of illness or patient-preference, a joint report from leading health bodies shows.
“Our challenge now is to consider how we can better understand and tackle the underlying causes. This is not a straightforward task, but exploring the data that lies behind these variations will be an important starting point,”
Chief Medical Officer

9. National Director for Commissioning Development emphasises the importance of good governance for CCGs.
' Where CCGs wish to make changes to their commissioning support arrangements, it is critical that the rationale behind these decisions is transparent and properly documented.’

10. Commissioning Guidance for Rehabilitation 2016 Good rehabilitation services will:
1.Optimise physical, mental and social wellbeing and have a close working partnership with people to support their needs
2.Recognise people and those who are important to them, including carers, as a critical part of the interdisciplinary team
3. Instil hope, support ambition and balance risk to maximise outcome and independence
4.Use an individualised, goal-based approach, informed by evidence and best practice which focuses on people’s role in society
5. Require early and ongoing assessment and identification of rehabilitation needs to support timely planning and interventions to improve outcomes and ensure seamless transition

11. Commissioning Guidance for Rehabilitation 2016 Good rehabilitation services will:
6.Support self-management through education and information to maintain health and wellbeing to achieve maximum potential 7.Make use of a wide variety of new and established interventions to improve outcomes e.g. exercise, technology, Cognitive Behavioural Therapy 8. Deliver efficient and effective rehabilitation using integrated multi-agency pathways including, where appropriate, seven days a week 9.Have strong leadership and accountability at all levels – with effective communication 10.Share good practice, collect data and contribute to the evidence base by undertaking evaluation/audit/research

12. Commissioning Guidance for Rehabilitation 2016 Good rehabilitation services will:
6.Support self-management through education and information to maintain health and wellbeing to achieve maximum potential 7.Make use of a wide variety of new and established interventions to improve outcomes e.g. exercise, technology, Cognitive Behavioural Therapy 8. Deliver efficient and effective rehabilitation using integrated multi-agency pathways including, where appropriate, seven days a week 9.Have strong leadership and accountability at all levels – with effective communication 10.Share good practice, collect data and contribute to the evidence base by undertaking evaluation/audit/research

13. How can outcome measurement help you with your service?
Examine changes over time
Investigate particular issues e.g. intensity of therapy
Identifying areas of strength
Identifying areas of weakness
Communicate with the client, other professionals and commissioners

15. Rehabilitation/Habilitation/ Enablement
The process of trying to help people who have suffered some injury/disease or developmental delay to maximise psychological well being, functional ability and social integration (Wade, 1992)
An often complex process which enables individuals after impairment by illness, developmental delay or injury to regain as far as possible control over their own lives (King’s Fund, 1999)

16. Measures of Performance
PROMs PREMs
TOMs

17. What For? Impairment/disorder reduction Improved Function
Psycho social gain
Wellbeing
Disorders have become more complex

18. Therapy treatment goals
to identify and reduce the disorder/ dysfunction
to improve or maintain the function and ability
to assist to achieve potential or integration
and to alleviate anxiety or frustration.

19. Choosing an Outcome Measure
Relevance
Validity
Reliability
Other considerations
Ease of use
Communication

20. Different outcome measures
Patient Reported Outcome Measures
Goal Attainment Scales
Clinical Assessments
Generic measures e.g. SF36, Teller, COPM etc
Therapy Outcome Measure
Patient Experience Measures---- not an ‘outcome measure’!

21. The Therapy Outcome Measure
Note

22. Therapy Outcome Measures for Rehabilitation Professionals
Pamela Enderby and Alexandra John (2015) ISBN PUBLISHED BY J&R

23. Referral /case history/ assessment
“So when do we do it?”
Referral /case history/ assessment
Aim/Goal
Intervention
End of episode of care

24. Now for something different!

25. We have added wellbeing as a domain
What is the International Classification of Function, Disability and Health (ICF)?
An international classification developed by the WHO of function and disability and its effects on the individual:
Classifies body structure and function
Classifies activity/independence
Classifies social participation
Classifies how the environment impacts upon the disabled individual
We have added wellbeing as a domain

26. Therapy Outcome Measures
The Dimensions

27. Disease/Disorder/Developmental Delay
Impairment
Disease/Disorder/Developmental Delay
Physical
Mental/ cognitive
An injury, illness, or congenital condition that causes or is likely to cause a loss or difference of physiological or psychological function as compared to those without such.

28. Activity Limitation Abilities Person
Difficulties an individual may have in the performance of activities/level of independence.

29. Participation Disadvantages Circumstances Society
Disadvantages an individual may have in the manner or extent of involvement in life situations.

30. Achieving potential in social situations Confidence in social settings
Autonomy
Integration
Controlling life
Social activity
Participation
Life role
Achieving potential in social situations
Confidence in social settings
Involvement in life situations
Sustaining work role
Interpersonal interactions
Community life
Tasks and Actions for living life
Restrictions on everyday life
Self-esteem
Life situations

31. Well-being Upset Feelings Satisfaction
Degree of upset, distress, or satisfaction with status
Incorporates frequency and severity

32. Concern
Frustration
Anger
Embarrassment
Withdrawal
Apathy
Emotional control
Emotional expression
Distress
Well-being
Satisfaction
Mood
Depression
Emotional detachment
Happiness
Sadness

33. Carer Well-being Upset Feelings Satisfaction
Emotional effect resulting in an upset, distress, or satisfaction with status

34. THERAPY OUTCOME MEASURE (TOM)
Based on:
World Health Organisation Classification - ICF
11 point ordinal scale with 6 defined points

35. The Core Scale

36. Impairment ----TOM
0 The most severe presentation of this impairment .5 1 Severe presentation of this impairment 2 Severe/moderate presentation 3 Moderate presentation 4 Just below normal/mild presentation 5 No impairment

37. Activity--- TOM
0 Totally dependant/unable to function .5 1 Assists/co-operates but burden of task/achievement falls on professional carer 2 Can undertake some part of task /needs a high level of support to complete 3 Can undertake task/function in familiar situation but required some verbal/physical assistance 4 Requires some minor assistance occasionally/or extra time to complete task 5 Independent/able to function

38. Participation TOM 0 No autonomy, isolated, no social/family role .5
1 Very limited choices, contact mainly with professionals, no social / family role, little control over life
2 Some integration, value and autonomy in one setting
3 Integrated, valued and autonomous in limited number of settings
4 Occasionally some restriction in autonomy, integration, or role
Integrated, valued, occupies appropriate role

39. Well-being TOM
0 Severe constant: High and constant levels of distress/ upset/ concern/ frustration/ anger/ distress/ embarrassment/ withdrawal/ severe depression/ or apathy, unable to express or control emotions appropriately.
1 Frequently severe: Moderate distress/ upset/ concern/ frustration/ anger/ distress/ embarrassment/ withdrawal/ severe depression/ or apathy. Becomes concerned easily, requires constant reassurance/support, needs clear/ tight limits and structure, loses emotional control easily.
2 Moderate consistent: Distress/ upset/ concern/ frustration/ anger/ distress/ embarrassment/ withdrawal/ severe depression/ or apathy in unfamiliar situations, frequent emotional encouragement and support required.
3 Moderate frequent: Distress/ upset/ concern/ frustration/ anger/ distress/ embarrassment/ withdrawal/ severe depression/ or apathy. Controls emotions with assistance, emotionally dependant on some occasions, vulnerable to change in routine, etc., spontaneously uses methods to assist emotional control.
4 Mild occasional: Distress/ upset/ concern/ frustration/ anger/ distress/ embarrassment/ withdrawal/ severe depression/ or apathy. Able to control feelings in most situations, generally well adjusted/stable (most of the time/most situations), occasional emotional support/encouragement needed.
5 No inappropriate: Distress/ upset/ concern/ frustration/ anger/ distress/ embarrassment/ withdrawal/ severe depression/ or apathy. Well adjusted, stable and able to cope emotionally with most situations, good insight, accepts and understands own limitations.

40. Adapted scales
1. Anorexia Nervosa and Bulimia Nervosa-scale under development 2. Augmentative and Alternative Communication (AAC) 3. Autistic Spectrum Disorder 4. Cardiac Rehabilitation 5. Cerebral Palsy 6. Child Language Impairment 7. Challenging Behaviour and Forensic Mental Health 8. Chronic Pain 9. Cleft Lip and Palate 10. Cognition 11. Complex and Multiple Difficulty 12. Dementia 13. Diabetes 14. Dietetic Intervention for the Prevention of Cardiovascular Disease 15. Dietetic intervention for Enteral Feeding – Paediatrics

41. Adapted scales 2
16. Dietetic intervention for Home Enteral Feeding – Adult
17. Dietetic intervention for Irritable Bowel Syndrome
18. Dietetic intervention for Obesity – Paediatric
19. Dietetic intervention for Obesity – Adult
20. Dietetic intervention for Undernutrition – Paediatrics
21. Dietetic intervention for Undernutrition – Adults
22. Dysarthria
23. Dysfluency
24. Dysphagia
25. Dysphasia
26. Dysphonia
27. Dyspraxia –Developmental Co-Ordination Difficulties
28. Equipment Services
29. Head Injury
30. Hearing Therapy/ Aural Rehabilitation

42. Adapted scales 3 32. Laryngectomy
33. Learning Disability – Communication
34. Mental Health
35. Mental Health – Anxiety
36. Multi-Factorial Conditions
37. Musculo-Skeletal
38. Neurological Disorders (Including Progressive Neurological Disorders)
39. Palliative Care
40. Phonological Disorder
41. Podiatric Conditions - scale under development
42. Post Natal Depression
43. Respiratory Care- Chronic Obstructive Pulmonary Disease (COPD)
44. Schizophrenia
45. Stroke
46. Tracheostomy
47. Wound Care

43. Describes the patient/client in four ways:
SUMMARY
A cross-disciplinary method of gathering information on a broad spectrum of issues requiring therapy/enablement/rehabilitation
Describes the patient/client in four ways:
Impairment (problems in body structure or function
Activity (performance of activities/independence)
Participation (disadvantages experienced in living)
Wellbeing (emotional level of upset or distress)
11 point ordinal scale:
0 = severe, 3 = moderate and 5 = normal /2 points
Administered at the beginning and again at the end of episode of care.

44. Impairment Mrs PR has had multiple sclerosis for 15 years
Impairment Mrs PR has had multiple sclerosis for 15 years. She is severely ataxic and has increased tone in all limbs. Her sitting balance is poor.
Activity Mrs PR uses an adapted wheelchair and all aids and appliances in the home eff ectively. She is in an adapted accommodation and can get to the local shops. She is able to care for the house, provide meals for the family and communicate effectively.
Participation Mrs PR plays an active social role: she is a school governor as well as a volunteer for a local charity. She enjoys her garden and wheelchair dancing.
Wellbeing/distress Mrs PR is a determined, resourceful lady who, not surprisingly, becomes concerned and frustrated on occasion, but is generally positive and uses good emotional support strategies.

45. Mrs PR
Summary Mrs PR has a severe level of impairment but overcomes most functional restrictions by being resourceful and using appropriate aids. Thus, she is only partially limited in activity and is not socially disadvantaged in any specific way.

46. How many scores? Impairment Impairment 1 Impairment 2
Not impairment 3 (use multifactorial or multiple difficulties)

47. How many scores? Disability/Activity Activity 1--- is the most usual
Participation
Participation 1
Well-being
Well-Being- patient /client
Well-Being—carer (only if involved)

48. AAC -Impairments Physical Cognitive Sensory Speech and language
Comprehension

49. Palliative care

50. Percentage of patients showing change (in amount) impairment

51. Different Reporting Structure

52. Therapy Outcome Measure
Ordinal Rating Scale

53. Conducting a Benchmarking Study
Internal Benchmarking:
Assess own performance
External Benchmarking:
Assess performance against benchmarking partners
First benchmark own service and make changes you want to make.
Find benchmarking partners - as close to own service as possible.

54. Results data on 8070 patient admissions to intermediate care.
from 32 IC teams across England
provided details of the service context, costs, staffing / skill mix (800 staff), patient health status and outcomes.

55. There was a 2.9% improvement in Therapy Outcome Measure score impairment scores for each additional discipline in the team.

56. There was a 1% improvement in TOMS impairment scores for each additional clinical support staff member in the team .

57. Royal College of Speech and Language Therapists Outcomes Project
Selecting an overall outcome measure which was:
psychometrically robust,
easy-to-use,
covers all the domains associated with the aims of therapy
easy to communicate

58. Charts showing the service user’s TOMs scores across an episode of care

59. Time series graph showing the service user’s TOMs scores across an episode of care

60. Sample data report R01: Change in TOMs scores between initial and final ratings across each domain
Data from your team/service
Comparison data from other teams/services involved in the pilot (matched for parameters applied)

61. Sample data report R03: Change in TOMs scores between initial and final ratings across each domain

62. Sample data report R05: Average change in TOMs scores between initial and final rating across each domain

65. TOMs Carer Confidence Scale
Bev Curtis, Pam Enderby, Alex John April 2017
TOMs Carer Confidence Scale
Confident
I am confident that I understand and I know how to help in all situations 5
I am mostly confident that I understand but have occasional difficulties in some settings. I mostly know how to help.
4.5 4
I am fairly confident that I understand what is helpful and know how to try different things but have frequent doubts. I usually know how to help.
3.5 3
I have some confidence in one setting (e.g. home) that I understand what to do but do not know what to do if that doesn’t work. I know a little about how to help.
2.5 2
I have a little confidence but I am often worried that I am not doing things right. I sometimes know how to help.
1.5 1
I am not confident that I understand what to do. I don’t know how to help.
0.5
No Confidence

66. Beware of causality