1. Therapy Outcome Measure
Workshop
Pam Enderby
Alex John

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

3. 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

4. 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:

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

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

7. 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

8. 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.’

9. 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

10. 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

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. will it enable benchmarking with other services?
Commissioning Guidance for Rehabilitation When considering what outcome data to request from providers, the following should be considered:
‘what outcome data is already collected locally (by the team managers and clinicians)?
what outcome measurement tools are appropriate for the client group, health condition and method of service delivery?
will it enable benchmarking with other services?
will it show how existing inequalities have been reduced in terms of access to services, experiences of services and outcomes achieved?’

13. Context
‘ ‘Funding constraints mean that double running costs are no longer viable. The need to close the spending gap in public services means that priority-setting involves difficult decisions and funding choices.’

14. 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

16. Collecting data on patient experience is not enough: they must be used to improve care
Coulter A., Locock L., Ziebland S., Calabrese J. BMJ 2014; 348 :g2225

17. Rehabilitation/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)

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

19. Measures of Performance
Health Gain
Social Gain

20. 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.

21. It’s what it says on the tin!

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

23. 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’!

24. The Therapy Outcome Measure
Note

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

26. “So when do we do it?”

27. Referral /case history/ assessment
Aim/Goal
Intervention
End of episode of care

28. Now for something different!

29. We have added wellbeing as a domain
What is the International Classification of Function, Disability and Health (ICF)?
An international classification 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

30. Therapy Outcome Measures
The Dimensions

31. 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.

32. Impairments are problems of body function or structure as a significant deviation or loss
A deviation from accepted population standards
Can be temporary or permanent
Slight or severe or vary over time
Not dependent upon the presence of disease
Broader than disease or disorder
Impairments may result from other impairment

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

34. Activity is the execution of a task or action by an individual
Occurs at the level of the individual
Is essential
Composite of various functions
Covers full range of life areas
Examples:
Maintaining a body position
Reaching and grasping
Walking
Self care
Communicating

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

36. Participation is involvement in life situations
Occurs at the social level
Covers the full range of life areas
Limitation may not occur as a result of impairment
Is culturally defined
Examples:
Shopping
Voting
Attending school
Working
Being part of a relationship
Being a carer

37. 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

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

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

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

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

42. The Core Scale

43. 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

44. 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

45. 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

46. 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.

47. 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

48. 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

49. 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

50. 0 = severe, 3 = moderate and 5 = normal---+ 1 /2 points
A cross-disciplinary method of gathering information on a broad spectrum of issues associated with therapy/enablement/rehabilitation
It allows description of the abilities of a patient/client in four ways:
Impairment (problems in body structure or function)
Activity (performance of activities)
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.

51. Ten programmes of care Patient/client does not need intervention
Patient needs prevention/maintenance programme
Patient needs convalescence
Patient needs slow-stream rehabilitation
Patient needs regular rehabilitation programme
Patient needs intensive rehabilitation
Patient needs specific treatment for individual acute disabling condition
Patient needs medical care and rehabilitation
Patient needs rehabilitation for complex, profound, disabling condition
Palliative Care

52. Therapy Outcome Measure
Ordinal Rating Scale

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

54. 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)

55. Commissioning Guidance for Rehabilitation 2016
Good rehabilitation focuses on good outcomes that are set by the people we treat and driven by their goals
Centres on people’s needs, not their diagnosis
Aims high and includes vocational outcomes
Is an active and enabling process – not passive care
Relies on interdisciplinary team working
Responds to changes in people’s needs
Integrates specialist and generalist services
Requires leadership for transformational change
Gives hope

56. Impairment
Participation
Wellbeing
Activity

57. Impairment
Participation
Wellbeing
Activity
Stephen Hawking

58. 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.

62. Beware of causality