Professional guidelines
Practical guidelines for heath and social care professionals
Free e-resources for professionals
Patient guidance
Resources for people affected by breathlessness
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 Ability to complete a questionnaire (AbilityQ) is a screening tool administered prior to the shoulder pain questionnaire (ShoulderQ) to establish ability to complete multiple choice questions and verbal/visual analogue scales (VAS) and any assistance required, such as reading questions, writing answers or prompting. The Shoulder pain questionnaire (ShoulderQ) is a structured questionnaire designed to assess the time and severity of hemiplegic shoulder pain particularly for patients with complex cognitive/communicative deficits following an acquired brain injury.
Access the Ability to complete a questionnaire & Shoulder Pain Questionnaires (AbilityQ & ShoulderQ) toolkit
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.
Access the Arm Activity Measure (ArmA) toolkit
The Depression intensity Scale Circles (DISCs) is a six-point visual scale depicting 6 circles with an increasing proportion of dark shading. No shading represents “no depression” and full shading “most severe depression.” The tool can be used alone or in conjunction with the Depression Integrated Care Pathway for assessing mood. Similarly, The Anxiety intensity Scale Circles (AISCs) is a six-point visual scale depicting six circles with an increasing proportion of yellow shading surrounded by black shading. No shading represents “no anxiety” and full shading “most severe anxiety.”
Access the Depression Intensity Scale Circles (DISCs) and Anxiety Intensity Scale Circles (AISC) toolkit
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). Data is recorded on the UK ROC software which produces automated outputs to assist clinical decision-making.
The UK FIM+FAM has been used extensively to demonstrate outcomes in the brain injured population. More recently, the UK FIM+FAM has been used to provide cut-off points within the prolonged disorder of consciousness population.
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.
This technique has been found to be suitable for health problems which warrant a multidimensional and individualised approach to treatment planning and outcome measurement. GAS has been used to make clinical improvements in a variety of settings including the care of older people, chronic pain and cognitive rehabilitation.
Access the Goal Attainment Scaling (GAS) toolkit
Hemiplegic shoulder pain (HSP) is a common complication of stroke but also occurs in other forms of neurological injury, that result in weakness or spasticity around the shoulder girdle. It can result from a number of different clinical problems and may impact negatively on rehabilitation.
Established in 2002, the integrated care pathway (ICP) for hemiplegic shoulder pain, is an evidence-based practical tool to support coordinated multidisciplinary reasoning and decision-making across the range of different clinical presentations, to support targeted intervention depending on the root cause of the symptoms.
The toolkit supports systematic recording of symptoms, signs and outcome within a standardised database, to improve our understanding of what approaches work best for which patients.
Access the Hemiplegic Shoulder Pain (HSP) toolkit
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.
Access the Leg Activity Measure (LegA) toolkit
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.
The Neurological Impairment Scale (NIS) is a scale to measure impairment in the context of a broad range of neurological conditions, including acquired brain injury.
It is a standardised assessment which was designed originally to form part of the minimum dataset for the UK Functional Assessment Measure (UK FIM+FAM), in order to control differences in case-mix and interpretation of functional gains across different populations.
Further development of the NIS was completed in 2015 prior to commencement of the National Clinical Audit of Specialist Rehabilitation for patients with complex need following major trauma (NCASRI) audit.
Access the Neurological Impairment Scale (NIS) toolkit
Our Neurosplinting Tool supports the prevention and correction of contractures in adults with neurological dysfunction.
The Northwick Park Dependency Score (NPDS) provides an assessment of patient care needs. There is also a version to be used in hospital (NPDS-H).
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.
Access the Northwick Park Dependency Score and Care needs Assessment (NPDS/NPCNA) toolkit
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.
Access the Northwick Park Therapy Dependency Assessment toolkit
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) provides an assessment of rehabilitation needs following acquired brain injuries which have awide variation in the level of complexity. It is essential that the correct level of care is provided in the correct setting based on the complexity of need.
The PCAT forms part of the mandatory toolset within the UK Rehabilitation Outcomes Collaborative (UK ROC) national clinical database for specialist rehabilitation, where it is used as the principal measure of rehabilitation needs. It is used to support clinical decision-making and to guide referral of individual patients to the appropriate level of rehabilitation service.
Access the Patient Categorisation Tool (PCAT) toolkit
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 an easy, quick to complete, measure that can be applied serially to measure complexity (or resource requirements) as these change over time in a rehabilitation setting. It is a good indicator of the cost of rehabilitation, predicting about 70% of the variable costs within a specialist inpatient rehabilitation setting.
Access the Rehabilitation Complexity Scale - Extended (RCS-E) toolkit
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).
Access the Scale of Pain Intensity (SPIN) toolkit
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 provide the national clinical registry for specialist rehabilitation. It systematically collates patient level data from all the specialist (Level 1 and 2) rehabilitation units in England.
Initially developed through a NIHR-funded programme grant (2008-2015), UK ROC is now commissioned by NHS England to provide its commissioning dataset and information on quality benchmarking and outcomes to inform service planning and delivery.
Read more about the UK Rehabilitation Outcomes Collaborative (UK ROC)
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.