6: Identifying occupational performance enablers and deficits

CHAPTER 6
Identifying occupational performance enablers and deficits

6.1 Introduction

Occupational therapists are increasingly required to demonstrate the effectiveness of their interventions and articulate how their intervention adds value to the client journey and client experience. Despite an increasing selection of robust outcome measures it remains challenging for the occupational therapist, eager to evaluate the impact of their interventions, to know where to begin when considering outcome measurement in neurological rehabilitation. In this chapter we explore the need for measurement, the fundamentals of good measurement practice and review some key measurement tools, which contribute to the identification of occupational performance enablers and deficits for people living with a long-term neurological condition.

6.2 What is measurement?

Measurement is defined by Fawcett (2013) as follows: ‘Measurement is the data obtained by measuring. Measuring is undertaken by therapists to ascertain the dimension (size), quantity (amount) or capacity of a trait, attribute or characteristic of a person that is required by the therapist to develop an accurate picture of the person’s needs and problems to form a baseline for therapeutic intervention and/or to provide a measure of outcome. A measurement is obtained by applying a standard scale to variables, thus translating direct observations or client/priority reports to a numerical scoring system’.

6.3 What are occupational therapy outcomes?

Outcomes are the end result of an intervention or action, or lack of it, on an individual, or on a population group. They are the changes that occur that may be attributed, to some degree, to the intervention (or lack of it).

(College of Occupational Therapists, 2012)

6.3.1 Why measure?

Outcome measurement can demonstrate the effectiveness of occupational therapy intervention for people living with a long-term neurological condition at an individual level or as part of a wider population group guiding further decision-making and/or intervention. The use of outcome measures, especially standardised measures, allows occupational therapists to build up and use a body of evidence for occupational therapy (College of Occupational Therapists, 2012).

An outcome measure is a tool to measure or quantify this change. An initial assessment provides the baseline against which a later measurement can be compared when considering the outcome for the person living with a long-term neurological condition (College of Occupational Therapists, 2012).

Figure 6.1 demonstrates the three factors involved in measuring in clinical practice.

Converging radial diagram demonstrating the three factors involved in measuring in clinical practice: Why measure? How to measure? What to measure? — **Figure 6.1** Understanding the three factors involved in measuring in clinical practice.

6.3.2 How to measure

A ‘standardised’ outcome measure (as for standardised assessment tools) has a set, unchanging procedure that must be used when carried out, as well as a consistent system for scoring. This ensures minimal variation in the way it is carried out at different times and by different testers. The scoring system may also have been normatively standardised, meaning that the test has been used with a very large group of similar people, giving an average score or range of expected scores that the tester and the service user can use to compare with their own results. Standardised tests have known levels of reliability, validity and utility, which ensure that therapists can select and use them appropriately and with confidence in the results.

(College of Occupational Therapists, 2012)

6.3.3 What to measure

Examples of outcomes that can be measured include the following (College of Occupational Therapists, 2012):

Improvements in health or quality of life (QOL)
Improvements in function or level of independence
Attainment of intervention goals
Service user satisfaction
Systems change such as reduced hospital length of stay, waiting lists and readmission rates.

The occupational therapist will also be concerned with measuring outcomes for secondary purposes such as service management, service commissioning, information for central government, clinical audit and other research (College of Occupational Therapists, 2012; Figure 6.2).

Titled matrix for meaningful measurement in occupational therapy practice. — **Figure 6.2** Meaningful measurement in occupational therapy practice.

6.4 Selecting the right measure

The quality of the measure relates to how well it has been constructed. A measure’s construction, or its psychometric integrity, relates to the way in which the measure is designed and performs (British Society of Rehabilitation Medicine [BSRM], 2005; Table 6.1). This includes how the measure is standardised in the way it is used and if it has been validated to show change in a specific clinical population when compared to a normal population. The measure’s reliability over time and between users also needs to have been objectively proven (Figure 6.3).

Table 6.1 How to use measures in a meaningful way? Key questions and red flags.

Source: Based on Turner-Stokes et al. (2012) and BSRM (2005).

	Key questions	Red flags
1. How ‘good’ is the measure?
Is the measure reliable and valid?	Does it give you the same outcome when used by different people (inter-rater reliability)? Does it give you the same outcome when used by the same person at a different time (intra-rater reliability)? Has the measure undergone a series of robust testing to prove it is a useful and valid tool within the clinical area intended? Is it validated for use with your client population? Is it meant to be used in a specific environment, in a particular way?	Read about how the measure has been formally evaluated. This is usually in the box or instruction book.
		If the measure is ‘home grown’ or has been developed within the department, it will usually not have been evaluated or proven to be reliable. This means that any results you get may not be meaningful or reproducible.
		Don’t use the measure:
		In a different way from the way it is designed, for example don’t miss sections out, complete a team score on your own If it is not validated for your client population, including age range and diagnosis If it is intended to be used in a different environment as this will invalidate the results.
Does the measure have face validity?	Does the measure capture what it is designed to measure? Is it easy to understand? Does the scoring method make sense? Can you readily make sense of the results and what they mean?	Make sure you are choosing the right measure for the clinical question you want answering, for example if you want to know specifically about levels of fatigue, use a fatigue measure not a global ADL measure.
		Don’t use the measure:
		If you don’t know how the results help you answer your clinical question If you don’t know how the results can help direct your interventions.
Is the measure sensitive enough?	Is the measure sensitive to change over time? Can it be used repeatedly or is there a test–retest learning effect? Does the measure have a floor or ceiling effect where clients are either too impaired (floor) or perform too well (ceiling) for the measure to capture change? Do changes on the measure indicate a clinically meaningful difference, that is what do the changes mean for the client? For example an increase of 5° range of movement may not make any difference to the person in their day-to-day tasks.	Some measures have more than one test version to avoid an improvement in the client score being a result of them learning the test! Use multiple versions as per the instructions
		As a rule, the more increments or points on a scale the measure has, the more sensitive it is. However, this also makes it more time consuming to score and more likely that you will need specific training to reliably differentiate between the increments on the scale
		When clients have both physical and cognitive impairments, ‘clinically meaningful change’ might prove different per person, for example a score of 20/20 on the Barthel ADL Index (Collin et al., 1988; Mahoney and Barthel, 1965) suggests the client is physically safe but might still require 24-hour care due to cognitive issues. You may wish to change the measurement you choose if the first time you use it the client is already very near the top or near the bottom.
2. Is the measure ‘suitable’ for you to use?
Can the measure be used readily in your work place?	Do you need space and kit to set up? How long does it take to use? Does it need to be scored by a team or one person? Do you need specific training to use it? How much does the measure and measurement kit cost? Do you need to be ‘accredited’ to use the measure?	It is now possible to watch the set-up and use of most measures in practice via media platforms such as YouTube. This is a very useful way to watch peers perform the test with clients, and flags up key aspects of space, kit and standardisation.
		Some measures might be suitable for your client population but may prove prohibitive in relation to pre-use training commitments, for example AMPS (Fisher and Bray Jones, 2010a, 2010b) requires the scorer to undertake a 5-day training course and a period of case practice before the user is ‘accredited’ to use the measure.
		Do not be tempted to use team scored measures as a sole clinician to save time. This will invalidate all results, meaning results can’t be submitted to UK Rehabilitation Outcomes Collaborative (UK ROC, 2015) if required or shared across teams, for example UK FIM + FAM (Turner-Stokes et al., 1999b) must always be scored by the team who support the client over 24 hours.
Can the measure be easily communicated to others?	Are your peers already using this measure? Can the results and outcomes from the measurement be readily conveyed and understood by others? Does the team think the effort of undertaking the measure is worth the added value it affords?	Being able to share measurement outcomes across teams allows changes in the client’s performance to be accurately and readily communicated over time. This is particularly significant when a client’s skills are declining as a sense of speed of deterioration will be objectively captured by a measure.
Can the measure be easily communicated to others?		Remember that your clinical question might change over time, for example if the client’s decline in performance is such that you need to refocus your intervention to support the family, then you need a measure to capture carer strain rather than the client’s performance at that time.

Diagram of client-centered decision-making over time in a hexagon surrounded by six hexagons, each one contains a question. — **Figure 6.3** Client-centred decision-making: selecting the right measure at the right time.

6.5 Commonly used measures in neurological rehabilitation

The following section is intended to provide an overview of outcome measures commonly used by occupational therapists within neurological rehabilitation environments. The tools described are not exhaustive and intend to represent a contemporary range of measures that therapists may use or see in use at the time of publication.

All measures included have been evidenced as being reliable and valid in a neurologically impaired adult population. However, it is suggested that readers make use of all original references and up-to-date published work relating to the measure they wish to use in order that they understand the reach of its use. It is also prudent for therapists to appreciate that the world of measurement is dynamic and measures are continually being developed and evaluated for clinical use (Table 6.2).

Table 6.2 Occupational therapy-specific outcome measures.

Assessment of Motor and Process Skills (AMPS) – activity-level measure
Brief overview Domain measured, intended use, value of end result and suitable audience	AMPS is an observational occupational therapy outcome measure designed to to evaluate an individual client’s skills and deficits at an activity level.
	The client is helped to choose two tasks that are undertaken in a familiar environment. Tasks are set up and carried out in a specified way, with no assistance provided by the observer unless unsafe task breakdown is seen.
	The outcome is a profile of occupational performance skills and deficits across personal and domestic activities of daily living (ADLs).
	AMPs outcomes can be shared with the client and commissioners to show client-level change. Results may also be readily transferred between AMPS raters, providing a reliable means of tracking occupational performance deficits across time and services.
Administration For example, set-up and scoring, training requirements	AMPS can be administered and scored in 1 hour or less and can be used in any relevant and familiar environment (clinical or community-based).
	Quality of performance is recorded on a 4-point scale across 16 motor and 20 process skills, providing a scale of motor and process ability compared to the norm.
	AMPS illustrates issues with performance such as increased physical effort, decreased efficiency, safety and risks taken offering predictive value regarding the need for physical assistance and supervision during ADLs.
	AMPS can only be used by a registered occupational therapist.
	To become a calibrated AMPS assessor, occupational therapists must undertake a 5-day course and complete a period of case examples. This creates a unique calibration profile for each scorer, and all results need to be added into a specific data system for results to be produced.
	AMPS assessors need to stay up to date and refresh if they have not used the measure for a number of years.
Key references	Fisher and Bray Jones (2010a, 2010b) and Fisher (1994, 1997)
Canadian Occupational Performance Measure (COPM) – activity and participation level measure
Brief overview Domain measured, intended use, value of end result and suitable audience	CPOM is a client centred measure which detects change in an individual client’s reported self-perception of task performance and satisfaction with that performance over time. The COPM is administered using a face-to-face semi-structured interview that may include the caregiver if required.
	By validating areas of key concern and actively collaborating on therapy goals, COPM helps clients to remain focused and motivated to engage in therapy over time.
	Rescoring should be undertaken blind to avoid a placebo effect.
	Interview fatigue and misunderstanding of rating scales can influence reliability of numerical scores particularly with clients with some degree of cognitive impairment. Carers can help ‘sense check’ the process with clients with changeable insight or variable levels of performance.
	COPM outcomes can be shared with the client and commissioners to show the client’s perceived change in performance and satisfaction with that performance over time.
Administration For example, set-up and scoring, training requirements	The COPM has a user manual that must be followed for scoring to be undertaken reliably. A COPM interview takes about 45 minutes to undertake and a five-step approach. A training DVD is also available.
	Problem identification
	A list of problems across self-care, productivity and leisure areas is recorded looking at what the client wants to do, needs to do or is expected to do
	Problem weighting
	All problems identified above are then scored on a 10-point visual analogue scale according to importance, with the top five problems identified and prioritised.
	Scoring
	Using a 10-point visual analogue scale the client then scores their perceived quality of performance and satisfaction with performance for the top five important problems. This generates a numerical value that can be used to benchmark the client’s perceived performance over time.
	Re-assessment and follow-up
	Following a period of intervention, the COPM interview can be repeated to enable perceived change to be captured for the top five important problems and other problems to be reprioritised and scored as required. Follow-up includes a refresh of issues initially identified, agreement of self-help strategies and referral onto other team members as required.
Key references	Dedding et al. (2004) and Law et al. (1990, 2005)
Model of Human Occupation Screening Tool (MOHOST) – activity- and participation-level measure
Brief overview Domain measured, intended use, value of end result and suitable audience	MOHOST aims to capture client-centred occupationally focused information, helping to inform an understanding of the client and their unique performance issues. The MOHOST is administered flexibly using a face-to-face semi-structured interview with self-reported performance where possible. This self-report is then reconciled via direct task observation and/or discussion with other caregivers. MOHOST is relevant to use within any speciality and is useful to capture occupational performance issues with clients who have limited ability to participate.
	Key areas that are captured represent the Model of Human Occupation (Kielhofner, 2002) dimensions of Volition, Habituation and Environment.
	MOHOST covers the following six sections: Motivation for occupation Pattern of occupation Communication and interaction skills Process skills Motor skills Environment with performance in each section captured by a further four sub sections that are scored using the FAIR systems. FAIR is a four-point standardised system used to describe circumstances of performance with one letter circled that best represents reported ability: F = Facilitates occupational participation A = Allows I = Inhibits R = Restricts Each subsection also has room for comments.
	Analysis of strengths and limitations are then summarised based on the profile found across all 24 subsections. MOHOST outcomes can be shared with the client and commissioners to show the client’s change in performance over time.
Administration For example, set-up and scoring, training requirements	All MOHOST resources and user manuals are available on-line and must be followed to ensure objectivity of measurement. MOHOST workshops are also available but not a prerequisite to using the tool.
	A MOHOST interview and assessment may be conducted over a number of sessions and may include information from others sources as required.
Key references	Kielhofner (2002) and Parkinson et al. (2006)

6.5.1 Activities of daily living indices

The following three activities of daily living (ADL) indices have been grouped together due to their similarity (Table 6.3). Although not exclusively used by occupational therapists, all three ADL indices provide an easy snap-shop of performance across listed ADLs.

Table 6.3 Commonly used activities of daily living indices.

Activities of Daily Living (ADL) Indices – activity- and participation-level measures including the following Barthel ADL Index Frenchay Activities Index Nottingham Extended ADL (NEADL) Index.
Brief overview Domain measured, intended use, value of end result and suitable audience	These three ADL Indices are client-centred measures that captures a client’s self-reported task performance in a given task list over time.
	Using either a 3- or 4-point scale, the client chooses the number that best represents their participation in the given tasks. For example, NEADL Index: 0 – Not at all 1 – With help 2 – Alone with difficulty 3 – Alone easily
	Scores are then summed to provide a total score, the greater the score indicating a greater level of ability or participation in the ADL list.
	Outcomes are very easy for the client to understand and are popular measuring tools in busy clinical services.
Administration For example, set-up and scoring, training requirements	Most of the aforementioned indices take about 5 minutes to complete and may be administered via a semi-structured interview, via observation or sent through the post and may include the caregiver if required.
	If used over time, rescoring should be undertaken blind to avoid a placebo effect.
Key references	The Barthel ADL Index – Mahoney and Barthel (1965) and Wade and Collin (1988)
	Frenchay Activities Index – Holbrook and Skilbeck (1983)
	NEADL Index – Nouri and Lincoln (1987)

All three ADL indices have ecological validity and transferability and are able to be scored and rescored across services over time. Although there is no need for formal training to use each index, team members need to decide on the version of the index they are using plus understand and follow published guidelines for use. All three ADL indices are limited in relation to their sensitivity and do not take into consideration cognitive issues during physical performance.

The Functional Independence Measure and Functional Assessment Measure

The Functional Independence Measure (FIM) scale was developed to capture a deeper level of ADL performance due to both physical and cognitive disabilities, scoring the level of assistance required for an individual to perform ADL. The Functional Assessment Measure (FAM) was subsequently added to look at additional issues around cognition, communication and participation and both are frequently used by in-patient neuro-rehabilitation teams. The combined UK version of the FIM + FAM is a reportable output for the UKROC database (Table 6.4).

Table 6.4 Functional Independence Measure and Functional Assessment Measure.

UK FIM + FAM – activity- and participation-level measures
Brief overview Domain measured, intended use, value of end result and suitable audience	The FIM is an observer reported ADL scale. It includes 18 items, of which 13 items are physical domains based on the Barthel Index and 5 items are cognition items. Each item is scored from 1 to 7 based on the level of independence.
	7	Complete independence	Fully independent
	6	Modified independence	Requiring the use of a device but no physical help
	5	Supervision	Requiring only standby assistance or verbal prompting or help with set-up
	4	Minimal assistance	Requiring incidental hands-on help only (subject performs >75% of the task)
	3	Moderate assistance	Subject still performs 50–75% of the task
	2	Maximal assistance	Subject provides less than half of the effort (25–49%)
	1	Total assistance	Subject contributes <25% of the effort or is unable to do the task
	The Functional Assessment Measure (FAM) includes FIM items but also adds 12 new items, covering cognition, such as community integration, emotional status, orientation, attention, reading and writing skills, and employability.
	A total score is given and can be used to illustrate added value across a client population. Client-level changes illustrating incremental change per task can be seen by using a ‘FAM splat’ visual diagram (Turner-Stokes et al., 2012).
	The UK FIM + FAM should be scored as a team, and record what the person does and not what they can do, when considering the preceding 24 hours. It can sometimes take about an hour to score; but as the team gains familiarity, scoring will take less time. Scorings can be repeated reliably across services.
Administration For example, set-up and scoring, training requirements	The scale can be administered by a physician, nurse, therapist or layperson as long as they have received training to use the measure correctly. Training involves attending a 1-day training course and subsequent practices.
Key references	Hamilton et al. (1987) and Turner-Stokes et al. (1999b, 2012)

Care needs and dependency level measures

Outcomes on the Barthel Index and the UK FIM + FAM are shown to correlate with care hours (Turner-Stokes et al., 1999b), but do not assess the number of people required to help nor the time taken to complete the task. This led to the development of The Northwick Park Dependency Score (NPDS) (Turner-Stokes et al., 1998) and the Northwick Park Care Needs Assessment (NPCNA) (Nyein and Turner-Stokes, 1999; Turner-Stokes et al., 1999a) both designed to provide an assessment on care hours and costs for clients at the more dependent end of the spectrum.

Both measures are observer-based activity-level measures and provide a numerical score that is then converted into hours of care/no of people required to assist. Both measures take about 10 minutes to complete, no training is required and can be repeated to show added value of therapy intervention at a client level or a client population level.

6.5.2 Commonly used impairment-level measures

The environment in which an occupational therapist works and their role within the team will often dictate the level of intervention that is used on a day-to-day basis. Although all occupational therapists should be familiar with occupational performance and ADL-level measures, knowledge of and confidence in using impairment-level measures is valuable and often required.

The following is a brief overview of impairment-level measures commonly seen in neurological rehabilitation (Tables 6.5 and 6.6).

Table 6.5 Physical impairment measures.

Name of measure	Measures	Brief description	Indicated reading
Motricity Index	Motor skills	A simple short and sensitive measure of motor skills. Validated for use in stroke but can be used for other upper motor neurone weakness.	Collin and Wade (1990) and Demeurisse et al. (1980)
Rivermead Mobility Index	Mobility	Simple to use, clinically relevant and reliable. Performance over 15 physical skills including lying, sitting, transfers, walking, stairs with the client reporting yes – 1, no – 0. The higher the score, the more physically able the client is.	Collen et al. (1990)
Timed ‘up and go’ (TUG) test	Sit to stand	The TUG test is a very easy-to-use test of sitting and standing balance plus mobility. The time it takes the client to rise from a chair, walk 3 m, turn around, walk back to the chair and sit down is timed and compared against norms. Developed for frail elderly, this measure has seen increasing popularity in Parkinson’s rehabilitation research.	Morris et al. (2001) and Podsiadlo and Richardson (1991)
Berg Balance test	Balance	Fourteen-item scale designed to measure balance. Balance tasks get increasingly more difficult from sitting to standing, standing with eyes closed, standing on one foot. A 5-point scale from 0 to 4 gives a possible score out of 56, and a high/medium/low classification to predict the likelihood of falls.	Berg et al. (1989)
Berg Balance test	Balance	A change of 8 points is required to reveal a genuine change in function between two assessments.	Berg et al. (1989)
Ten-meter timed walk test	Cadence	Easy to set up and standardise, clients are asked to walk along a 10-m walkway while the therapist records total time taken and number of steps taken.	Bohannon and Andrews (1990) and Bradstater et al. (1983)
Modified Ashworth Scale (MAS)	Spasticity	Tests resistance to passive movement about a joint with varying degrees of velocity. The original Ashworth scores range from 0 to 4, with five choices. A score of 1 indicates no resistance and 5 indicates rigidity. The MAS adds a 1+ scoring category to indicate resistance through less than half of the movement. Thus the scores range gives six choices from 0, 1, 1+, 2, 3, 4. Once practised, the MAS is quick and reliable to use.	Ansari et al. (2008) and Bohannon and Smith (1987)
Nine-Hole Peg test	Dexterity	NHPT is a simple timed test of dexterity that involves the subjects placing nine dowels in nine holes. Subjects are set up in a standardised way and timed on removing and subsequently replacing nine dowels. Times are presented as standard deviation away from a norm.	Mathiowetz et al. (1985)
Action Research Arm Test (ARAT)	Upper limb	ARAT has four subsections of grasp, grip, pinch and gross movement are scored. Each subsection has incrementally challenging tasks that are passed or failed.	De Weerdt and Harrison (1985)
Visual Analogue Scales	Pain	Visual analogue scales and Numeric Graphic Rating Scales (where numbers are also added) are client-based measuring tools that can be used to answer a variety of questions ranging from level of pain to level of satisfaction with care. Pictorial pain scales have shown to be useful for clients with communication disorders and cognitive impairments.	Jackson et al. (2006)

Table 6.6 Cognitive impairment measures.

Name of measure	Measures	Brief description	Indicated reading
Test of Everyday Attention (TEA)	Attention	TEA uses eight subtests to explore attentional function, largely using everyday materials. Use of real-life scenarios means that clients enjoy the test and find it relevant to the problems faced in life. It is sensitive and clinically useful. The test takes about an hour to perform, and online training is required to learn to use the test.	Evans and Preston (2011)
Behavioural Assessment of Dysexecutive Syndrome (BADS)	Executive functioning	BADS specifically assesses the skills and demands involved in everyday life. It is sensitive to the capacities affected by frontal lobe damage, testing skills exercised in everyday situations.	Wilson et al. (1998)
Behavioural Assessment of Dysexecutive Syndrome (BADS)	Executive functioning	The test takes about an hour to perform, and online training is required to learn to use the test.	Wilson et al. (1998)
Doors and People	Long-term memory	Doors and People is a memory test that consists of four main categories: doors, people, shapes and names testing visual recognition, visual recall, verbal recognition and verbal recall.	Baddeley et al. (1994)
Doors and People	Long-term memory	The test takes about 45 minutes to perform, and online training is required to learn to use the test.	Baddeley et al. (1994)
Hospital Anxiety and Depression Scale (HADS)	Mood	HADS was originally developed to be used by doctors to determine the levels of anxiety and depression that a client was experiencing. The HADS is a 14-item scale that generates ordinal data. Seven of the items relate to anxiety and seven relate to depression. Although superseded by many more specific assessment of mood, HADS is still frequently used in clinical practice.	Zigmond and Snaith (1983)

6.5.3 Perceived health and QOL measure

Over the past 5 years or so, the biggest area of measurement development has been around the production of patient-reported outcome measures (PROMs). This trend has been driven by the need to demonstrate client choice over treatment, and the inclusion of PROMs is now seen as fundamental to inform the commissioning of services for a client population.

This has led to a huge expansion in the development of questionnaires, interview schedules and rating scales that measure states of health and illness from the client’s perspective. PROMs allow clients to give feedback about the way they perceive their health and the impact that treatments or adjustments to lifestyle have on their QOL.

The list given in the text includes some more-established and well-used tools used to report QOL and other generic PROMs that elicit perceived day-to-day issues for clients and their carers (Table 6.7). In subsequent sections, disease-specific PROMs will be introduced to illustrate how PROMs can be used to highlight key issues around health, disease progression and QOL.

Table 6.7 Commonly used quality of life measures.

Name of measure	Measures	Brief description	Indicated reading
12-Item General Health Questionnaire (GHQ12)	Self-reported screen for well-being (general population)	The GHQ-12 is an extensively used instrument used to screen for mental health well-being in a general adult population. It is short (12 questions) and is used often to screen within populations of clients with long-term conditions as a first red flag for anxiety and depression. Self-reported by the client, the GHQ12 can be sent through the post and completed in 10 minutes.	Rickards (2005)
Medical Outcome Study Short Form (SF 36)	Self-reported screen for well-being (general population)	The SF-36 consists of 36 items split into 8-scaled scores that look at various aspects of health and well-being. Each scale is directly transformed into a 0 to 100 scale with a lower score indicating more disability. To calculate the scores, it is necessary to purchase special software. Its abbreviated version SF-6D is often used to evaluate health economics and the cost of disease burden.	Ware and Sherbourne (1992)
EUROQOL (EQ-5D)	Self-reported screen for well-being (general population)	The EQ-5D health questionnaire provides a simple descriptive profile and a single index value for health status. Increasing in international popularity, the EQ-5D is used to commission NHS services as it can be used to estimate quality-adjusted life years (QALYs). To note, there are numerous variations of this measure and specific software is used to provide results.	Dolan (1997)
NeuroQOL	Self-reported screen for well-being in neurologically impaired	NeuroQOL looks at health-related QOL in 17 domains and sub-domains. The measure requires no training to use and can be administered via Computer-Assisted Testing or in short forms. Each sub-domain that can be selected and administered separately depending upon individual client needs. The score generated gives a standard deviation away from the norm.	Cella et al. (2012)
Caregiver Strain Index	Perceived carer burden (general population)	The Caregiver Strain Index was one of the first means of identifying how the carer of the disabled client was coping. Although now superseded by disease specific care giver tools, the Caregiver Strain Index is still used frequently and has face validity and ease of utility.	Adelman et al. (2014) and Robinson (1983)

6.6 Disease-specific measures

Most of the following disease-specific measures were initially developed to help evaluate intervention within a research world. Increasing in popularity, most are now used in day-to-day practice by clinical teams and are often viewed as critical in demonstrating the impact of rehabilitation to support ongoing service funding. The reader should note that the world of outcome measurement is dynamic and more measures are being developed by clinical teams, particularly those related to disease-specific heath and illness.

The following section will introduce key measures used for clients with the four main progressive neurological diseases considered within this book: Huntington’s disease or HD (Table 6.8), Motor neurone disease or MND (Table 6.9), multiple sclerosis or MS (Table 6.10) and Parkinson’s (Table 6.11). The measures included may be used by any member of the team including occupational therapists.

Table 6.8 Key measures for Huntington’s disease.

Name of measure	Measures	Brief description	Indicated reading
Unified Huntington’s Disease Rating Scale (UHDRS)	Impairment and activity level	The UHDRS is a tool developed to provide a uniform assessment of the clinical features and course of HD. Still mostly used in clinical research, the components of the UHDRS are as follows: Motor Assessment Cognitive Assessment Behavioural Assessment Independence Scale Functional Assessment Total Functional Capacity (TFC).	Huntington’s Study Group (1996)
HD Health-Related QOL Questionnaire (HDQOL)	Self-reported QOL	HDQOL is a standardised instrument for measuring health-related QOL and is a validated disease-specific measure designed for HD. A summary score plus scores on several discrete scales indicates health-related QOL.	Hocaoglu et al. (2012)

Table 6.9 Key measures for motor neurone disease.

Name of measure	Measures	Brief description	Indicated reading
Neurological Fatigue Index for MND (NFI-MND)	Fatigue	The NFI-MND is a simple, easy-to-administer 8-item fatigue scale. It includes separate scales for measuring fatigue experienced as reversible muscular weakness and fatigue expressed as feelings of low energy and whole-body tiredness.	Gibbons et al. (2011)
Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40)	Self-reported quality of life (QOL)	The ALSQ-40 is a self-reported 40 point scale looking at the impact on MND on QOL. Compared to other non-MND-focused measures, the ALSAQ-40 covers areas related to psychological and spiritual issues.	Epton et al. (2009)
Herth Hope Index	Self-reported QOL-related to future hope	The Herth Hope Index is a quick and simple tool used to capture self-reported hope for people at the end of their life. Clients are asked to respond to 12 prewritten questions regarding quality of life and hope for the future being experienced now, using a 4-point Likert scale: strongly agree, agree, disagree, strongly disagree.	Herth (1992)
Edinburgh Cognitive and Behavioural ALS Screen (ECAS)	Cognitive impairment	The ECAS is a practical screening tool that incorporates a range of short cognitive tests that have shown to be sensitive to cognitive impairment in ALS.	Abrahams et al. (2014)

Table 6.10 Key measures for multiple sclerosis.

Name of measure	Measures	Brief description	Indicated reading
Expanded Disability Status Scale (EDSS)	Impairment-level measure	The EDSS is a method of quantifying disability in multiple sclerosis and monitoring changes in the level of disability over time. Scales from 0 to 5 or 0 to 6 are used to best describe body-level change in seven categories: Visual function Brainstem function Pyramidal function Cerebellar function Sensory function Bowel and bladder function Cerebral function plus an ambulation score.	Kurtzke (1983)
Expanded Disability Status Scale (EDSS)	Impairment-level measure	The greater the score, the greater the body-level impairment and impact on functional mobility.	Kurtzke (1983)
Modified Fatigue Impact Scale	Self-reported impact of fatigue on activity and participation	The MFIS is a modified form of the FIS based on items derived from interviews with clients with MS concerning how fatigue impacts their lives. The full version consists of 21 items, whilst an abbreviated version with five items can also be used.	Fisk et al. (1994)
Modified Fatigue Impact Scale		This MFIS assesses the effects of fatigue in terms of physical, cognitive, and psychosocial functioning and is also included in the MSQLI.	Fisk et al. (1994)
MS Impact Scale – 29 (MSIS-29)	Self-reported quality of life (QOL)	MSIS-29 measures 20 physical items and 9 psychological impact of multiple sclerosis. Clients are asked to answer 29 questions about the impact of MS on their day-to-day life during the previous 2 weeks. The MSIS-29 has been found to be a clinically useful and scientifically sound client-based outcome measure of the impact of MS.	Hobart et al. (2005) and Riazi et al. (2002)
MS Quality of Life Inventory (MSQLI)	Self-reported QOL	The MSQLI is a battery consisting of 10 individual scales providing a QOL measure that is both generic and MS-specific. If all 10 self-reported questionnaires are competed, it takes about 45 minutes.	Fischer et al. (1999)

Table 6.11 Key measures for Parkinson’s.

Name of measure	Measures	Brief description	Indicated reading
Hoehn and Yahr Staging	Impairment-level description	The Hoehn and Yahr scale was originally published in 1967, although still commonly used. It is a 5-point rating system for describing how the symptoms of Parkinson’s progress.	Hoehn and Yahr (1967)
Unified Parkinson’s disease rating scale (UPDRS)	Disease progression and disability	The UPDRS is a rating tool used to follow the longitudinal course of Parkinson’s. It is made up of four parts:	Fahn et al. (1987) and Goetz et al. (2008)
		1. Non-motor experiences of daily living split into two parts
		1a – behaviours assessed by the investigator with information from the client and caregivers
		1b – for completion by the client with the help of caregivers if desired, but independently of the investigator
		2. Motor experiences of daily living – for completion by the client and/or caregivers as per 1b
		3. Motor examination
		4. Motor complications
Parkinson’s Disease Questionnaire (PDQ 39 or PDQ 8)	Self-reported quality of life (QOL)	The PDQ-39 is a 39-item self-report questionnaire, which assesses Parkinson’s-specific health-related quality over the last month. The PDQ-36 and its shorter version the PDQ-8 assess how often clients experience difficulties across the eight QOL dimensions looking at the impact of PD on specific dimensions of functioning and well-being. Easy to administrate and use.	Peto et al. (1998)

Information about measures and their use can be readily found on associated charities and support group websites. Clients can also be directed to find more information about the use and impact of measures in informing their care.