Professional guidelines
Practical guidelines for heath and social care professionals
Patient guidance
Outcome and assessment tools
We have been developing outcome and assessment tools for research, clinical care and audit for over two decades. These tools are free to use and some require you to register with us.
The Arm Activity Measure (ArmA) is a measure of difficulty in passive and active function for application following focal therapy intervention and in particular for spasticity interventions, both physical and with botulinum toxin injection. The active and passive sub-scales of the tool are treated as separate constructs, but nevertheless have a relationship and are both important in the achievement of clinically relevant goals. The ArmA is likely to have utility in practice for evaluation of spasticity intervention and possibly other focal interventions such as task practice training for active function improvement.
The Depression Intensity Scale Circles (DISCs) have been developed and adapted for use in the assessment of people with brain injuries and symptoms of depression. Generally, people who can understand instructions and can identify correctly the highest, lowest and mid-point on the Numbered Graphic Rating Scale (NGRS) prefer to use this scale. The DISCs is designed to be intuitive for people with more profound cognitive and language problems. DISCs are displayed on a laminated card. Each circle is 2 cm diameter. The scale measures 15 cm from the centre of the bottom circle to the centre of the top circle.
If using this tool, please cite the source reference (PDF), which gives details of evaluation of validity and repeatability.
This structured framework has been developed for use in spasticity management. Goal analysis from four large international studies has identified six common categories for treatment goals. It includes both patient-reported and clinician-rated elements. Developed originally in the context of upper limb intervention, the approach as now been adapted to encompass outcome evaluation in both upper and lower limb spasticity. The Index comprises a structured approach to Goal Attainment Scaling together with severity indicators and confounders to recovery, and a limited set of standardised measures determined by the selected goal areas of treatment for any given patient.
The Functional Independence Measure (FIM) is a global measure of disability and can be scored alone or with additional items that formulate the Functional Assessment Measure (FAM). The UK FIM+FAM was designed for measuring disability due to brain-injury. FIM+FAM is the mandatory outcome measure within UK ROC. It has an ordinal scoring system (1-7) for all thirty items (1=complete dependence and 7=fully independent). The Barthel Index can be derived from the FIM+FAM.
Goal Attainment Scaling (GAS) is an individualised method of scoring the extent to which patient’s individual goals are achieved in the course of intervention. In effect, each patient has their own outcome measure but this is scored in a standardised way as to allow statistical analysis. Traditional standardised measures include a standard set of tasks (items) each rated on a standard level. Tasks are individually identified to suit the patient, and the levels are individually set around their current and expected levels of performance.
GAS was first introduced by Kirusek and Sherman (1968) for assessing mental health outcomes. This technique has been found to be suitable for health problems which warrant a multidimensional and individualised approach to treatment planning and outcome measurement and has been used to demonstrate clinically important change in a variety of settings including elderly care, chronic pain and cognitive rehabilitation. We have led an international programme of work to encourage the consistent use of GAS in routine clinical practice. This has led to the development of the following resources.
The Leg Activity Measure (LegA) is a measure of difficulty in passive and active function for application following focal therapy intervention and in particular for spasticity (botulinum toxin and physical) interventions. The active and passive sub-scales of the tool are treated as separate constructs, which nevertheless are related and are both important to the achievement of clinically relevant goals. The LegA is therefore likely to have utility in practice for evaluation of spasticity intervention (often for passive function) and possibly other focal interventions such as task practice training for active function improvement. The LegA is unique in addressing these constructs and being patient reported to evaluation function in the ‘real life’ context.
The Lower Extremity Therapy Recording Schedule (LEG TS) questionnaire is designed to record therapy time and intervention, either done by a therapist or by the patient themselves, with or without the help of a carer.
The Needs Provision & Complexity Scale (NPCS) was designed for long term neurological conditions. It measures community care and rehabilitation needs and assesses provision for these needs. It also includes a costing algorithm to estimate the cost of meeting unmet needs. It may be used at individual level during integrated care planning to monitor the changing needs of a given patient over time and the services that are provided to support them at different stages along the care pathway. It may also have application at population level to identify gaps in service provision and to estimate the likely costs of addressing those gaps.
NPCS development was initiated by the LTnC Dataset Development Group. The group consisted of service users and carers, as well as commissioners and healthcare professionals from a range of disciplines, all of whom were experienced in care and planning of services of people with LTnC. The instrument progressed through an iterative process of testing and refinement before publication by the NHS Information Centre in 2010. Versions of the NPCS were subsequently developed for completion by patients and/or their carers.
In neurological rehabilitation, patients can present with diverse combinations of physical, cognitive and behavioural impairments, which may impact on rehabilitation potential. A standardised assessment of neurological impairment may provide an opportunity to control differences in case-mix and so assist interpretation of functional gains in different populations.
The Neurological Impairment Scale (NIS) forms part of the standard minimum dataset for the UK FIM+FAM. It records severity of functional impairment (rated 0-3) across thirteen domains mapped onto the International Classification of Functioning (ICF). The score range is 0-50.
Our Neurosplinting Tool supports the prevention and correction of contractures in adults with neurological dysfunction.
The Northwick Park Nursing Dependency Scale (NPDS) is an ordinal scale designed to measure daily living activities and patient care needs for highly dependent patients. The Scale was originally designed to be completed by a nurse or other member of the care team who regularly provides care for the patient, usually in a hospital or nursing home setting. For use in the community, a self-complete version of the NPDS has been developed and validated in comparison with the original version. It has been used to demonstrate the cost-efficiency of rehabilitation but can also be translated to a Barthel Index.
The Northwick Park Care Needs Assessment (NPCNA) is derived from the Dependency Scale using a computerised algorithm based on a set of validated 'rules' or assumptions, together with a small additional set of five questions about the community setting. The computer outputs include an overall nursing dependency score, an estimation of care hours for each carer and a suggested care package required to meet the care needs. Graphs provide a visual representation of change in care needs, hours and cost. The NPCNA is freely available for use without restriction. In its original form it is completed by a nurse or carer who knows the patient well, although a self-report version is available for use in postal questionnaires. No specific training is required.
Whilst these tools have been developed for use in a UK rehabilitation setting, they can also be used in other nursing settings in the UK and abroad.
The Northwick Park Therapy Dependency Assessment Tool (NPTDA) provides a measure of therapy intervention designed for use in specialist neuro-rehabilitation settings, where high intensity rehabilitation is provided by a multi-disciplinary team. The tool includes 30 items of therapy dependency in 7 domains; Physical handling programme, basic functions, activities of daily living, cognitive/psychosocial/family support, discharge planning, indirect interventions and additional activities, special facilities, investigations and procedures.
The NPTDA is recommended as part of the NIHR dataset for Level 1 and Level 2 services. Completion of the tool is more time consuming than the RCS or Barthel Index and is suggested that it be completed fortnightly in a MDT meeting but maybe pre-prepared by the lead discipline for each item to speed up the process. The therapy dependency assessment tool is part of the parallel tranche data and should be collected at the same time as the nursing dependency score.
The score given for each therapeutic intervention reflects both direct patient contact time in relation to the task and time spend away from the patient. The computer outputs include an overall dependency score, calculation of total therapy time per patient.
The Palliative Care Outcome Scale (POS) was developed for use with patients with advanced disease, and to improve outcome measurement by evaluating many essential and important outcomes in palliative care. Since it launched, POS has been tested and improved by researchers around the world. POS consists of ten items that assess physical symptoms, emotional, psychological, and spiritual needs, a provision of information and support resulting in individual item scores and overall profile scores. An additional question provides patients with the opportunity to list their main problem/s.
The Patient Categorisation Tool (PCAT) aims to ensure that patients receive the level of care required in the right setting an assessment of need is required. Patient information is captured within the UK ROC database.
The NHSE service specification identifies 4 categories of need (A, B, C & D) based on selected criteria. The description for each category listed in the NHSE service specification has been included in the tool. This tool was initially developed as a checklist to assist in identifying patients with complex needs requiring treatment in Level 1 (tertiary) inpatient rehabilitation services and then was further developed as an ordinal scale to identify category A, B or C/D needs. The tool comprises of 18 domains each with 3 columns containing level of need categories. In addition to the domains, there are supplementary questions based on clinical impression on the service level required, potential category of need and estimated duration of in-patient rehabilitation stay.
Each domain is rated on a score of 1-3 (highest score applied once to each domain). Only the highest of either the medical/neuropsychiatric scores is included (not both scores) and the “duration of stay” is allocated a score of 0-2. So the final tool is a 17 item scale with a total score range of 16-50. The category of need currently remains a clinical decision; however, there is reasonable indication that a total PCAT score of 19-24 indicates Category C needs, 25-29 category B needs and a total PCAT score of more than 30 category A needs.
The Post ICU Presentation Screen (PICUPS) is a simple 14-item tool developed to support triage and handover of patients stepping down from ITU into the acute wards, and onwards into rehabilitation. We have developed the UK ROC software to assist with data collection and collation.
The PICUPS Plus represents 10 additional items to identify potential higher-level items that may need to be addressed as the patient progresses during acute care. Their purpose is to inform the immediate plan for care on the acute ward and to identify problems likely to require furthermore detailed evaluation by members of the multi-disciplinary team and so trigger appropriate referrals. Together, these tools inform the development of a personalised Rehabilitation Prescription (RP) as the patient leaves the acute care setting. The RP sets out their needs for rehabilitation and helps to direct their on-going care after discharge from the acute ward. For most patients, this will be to home and community based services, but a small proportion may require a further period of inpatient rehabilitation before they are ready to leave hospital.
As well as guiding decision-making for patients, this information will help to identify where their needs are and are not being met. Used at population level, the information will quantify shortfalls in current service provision and estimate the gap between capacity and demand for future planning. Following developed during the COVID-19 pandemic, these tools are also expected to be useful in future for any patient following prolonged treatment in intensive care.
A disorder of consciousness or impaired consciousness could be as a result of a traumatic brain injury, stroke or other cause of damage to the brain. These standardised objectives are a baseline that aim to support teams when discussing the needs of individual patients with prolonged disorders of consciousness (PDOC), and are primarily process focussed to ensure clinical issues are considered and addressed. The wordings of the objectives are broad to facilitate interpretation as appropriate to individual patient needs. The objectives are used in conjunction with family selected goals (GAS SMART goals) and reviewed alongside them.
The Rehabilitation Complexity Scale - Extended (RCS-E) provides a simple overall measure of care, nursing, therapy, medical and equipment needs, and is designed to offer crude banding of complexity. The RCS-E is quick to complete. It provides a good indication of caseload and is part of the minimum dataset for neurological units.
The purpose of the Scale of Pain Intensity (SPIN) is to screen for and document any pain symptoms in admitted patients, use it to describe their general level of pain and identify the appropriate measure to record pain symptoms serially. The Numbered Graphic Rating Scale (NGRS) is displayed on a laminated card on the opposie side of the SPIN page. It measures 10 cm, with numbered increments every 1 cm. Score range 0-10. Score range 0-5 (a multiplier of 2 may be applied to the DISCs data to make it compatible with NGRS data).
The Spasticity-related Quality of Life Instrument (SQOL-6D) was developed to fulfil the need for a health-related quality of life measure that would be sensitive to the disease burden and changes following focal treatment for Upper limb Spasticity (ULS) and that could in future be used in economic evaluation of treatments for ULS. It was developed on the basis of previous research led by King’s College London, including extensive analysis of goals and other outcomes from several large international studies.
The UK Rehabilitation Outcomes Collaborative (UK ROC) is a national database designed to collect, calculate and display specialist inpatient rehabilitation data. It stores and processes each case episode together with the Rehabilitation Complexity Scale (as a measure of rehabilitation needs) and at least one of an agreed set of outcome measures which include the full dataset (UK FIM+/-FAM) and the minimum dataset (Barthel Index). They are free and available to participating sites.
The Upper Limb Focal Spasticity Therapy Recording Schedule (ULSTR) questionnaire records therapy time and intervention. It is completed either by a therapist or by the patient, with or without help from a carer.
The Upper Limb Spasticity Index is a standard battery of assessments, which includes both patient reported and clinician-rated elements – ultimately reflecting Quality of life related to upper limb spasticity.
The Work-ability Support Scale (WSS) is designed to assess an individual’s ability to work and support needs in the context of their normal work environment following the onset of acquired disability. WSS is also used to support decision-making with regard to vocational rehabilitation. It is designed to be used both for people actually in work, or as a planning tool for those considering returning to work.
The tool has 16 items across three domains of work functioning; physical/environment, thinking/communicating and social/behavioural. Scores range from one for constant support, to seven for independence. There are also an additional seven items related to contextual factors outside the workplace that could affect work functioning.