UKROC database

In 2007 Professor Lynne Turner-Stokes submitted an application for a programme grant to set up a UK national database of outcomes after rehabilitation, particularly for patients receiving inpatient rehabilitation for complex problems seen after acute onset disability. Most had neurological damage, but this is an observed fact and was not a specific intention. The British Society of Rehabilitation Medicine was one of the supporting organisations. The database became known as the UKROC database – the UK Rehabilitation Outcomes Collaborative. The programme started in September 2008. Its development slightly preceded the development of rehabilitation services for people after major trauma, but UKROC and major trauma rehabilitation services are inextricably intertwined.

The United Kingdom Rehabilitation Outcomes Collaboration, known universally by anyone involved as UKROC, became associated with the development of Level I, II and III rehabilitation services within the UK, it helped inform the development of trauma rehabilitation services, and it helped develop a reasonable, fair costing and commissioning basis for rehabilitation. It is a tribute to the vision, determination and sheer hard work of Professor Lynne Turner Stokes that it has achieved so much. The late Professor Bipin Bhakta was also a co-applicant on the original application. This page outlines some of the outputs based on or derived from the original programme. It starts with an overview of the context in which it developed. The website giving further details about UKROC, including how to obtain research access to the database, are available here.

Context of development

The UKROC programme was built upon a series of systematic reviews conducted in the 2000s that demonstrated the strong evidence base for the effectiveness of coordinated multi-disciplinary rehabilitation. A Cochrane review (here) demonstrated the benefits of early and ‘continuous chain’ rehabilitation from randomised controlled trials (RCTs) following acquired brain injury, and a further systematic review (here) assimilated and compared the evidence from RCTs and non-randomised studies.

A proof-of-principle study in 2006 demonstrated how data collected in the course of ‘real life’ routine clinical practice could be used to demonstrate that rehabilitation provides value for money through savings in the cost of ongoing care. (here)

Extensive national engagement process with rehabilitation professionals from all around the country followed. (here) This led to a reasonable agreement on a set of tools that could be used in routine clinical practice to measure

  1. an individual’s needs for rehabilitation,
  2. the inputs provided to meet those needs, and
  3. the outcomes that result (in terms of improved independence.
    1. the combination allowed cost-efficiency to be calculated.

All  of the tools used in the UKROC dataset have been subject to rigorous psychometric validation which is summarised in the programme report. (here)

The output associated with and derived from the programme covers many aspects, and they will be covered in separate sections.

Studies on costing and payment

In 2012 three papers were published describing the costing of rehabilitation services. They give the foundation of current payments. The first (here) was a Rehabilitation in Practice article in Clinical Rehabilitation on “International casemix and funding models: lessons for rehabilitation.”. It discusses how case mix can and has been used to develop costing models for rehabilitation services. For anyone interested – and arguably we should all be very interested – this gives a sound basic introduction to costing problems.

The next two covered the position in the UK. One, “A cost analysis of specialist inpatient neurorehabilitation services in the UK” (here) investigated the cost of inpatient rehabilitation services and showed, unsurprisingly, that staff costs accounted for two thirds of costs, and the great majority of the variation in cost between different units. Direct costs were 83% of all costs, and only 7% were overheads.

The other, “Healthcare tariffs for specialist inpatient neurorehabilitation services: rationale and development of a UK casemix and costing methodology.” (here) describes and explains how the data were used to develop a method for payment for services, a method that is still used with allowance made for changes in staffing costs over time.

Studies on costs and effects

Following the development of a costing model, agreed and used by NHS England in commissioning and paying for inpatient rehabilitation services, a series of five papers on cost-effectiveness have been written. These are based on UKROC data provided by rehabilitation teams across the UK.

The first, published in 2016 and entitled “Cost-efficiency of specialist inpatient rehabilitation for working-aged adults with complex neurological disabilities: A multicentre cohort analysis of a national clinical dataset.” (here) studied the reduction in daily care costs that occurred during an inpatient rehabilitation rehabilitation spell, and worked out how long it was before the reduction in ongoing daily care costs exceeded the costs of the rehabilitation costs. The answer was 14 months for high-dependency patients, 22 months for medium-dependency patients. Of course, many of the savings probably accrued to a Social Care budget, not an NHS budget although continuing healthcare is likely to have benefitted in some cases.

A similar paper was published later in 2016, analysing costs and benefits associated with the relatively rare hyperacute units that take patients during the acute phase of recovery while they are still medically unstable. This was: “Cost-efficiency of specialist hyperacute in-patient rehabilitation services for medically unstable patients with complex rehabilitation needs: a prospective cohort analysis.” (here) These units are yet more costly. Nevertheless, there was a saving in overall costs after 28 months. It is worth noting that many of these patients will live for 10-40 years and that the cost probably does not drop much after final discharge from rehabilitation.

A third paper, published two years later, further emphasised the societal, and often NHS cost savings. [Estimated Life-Time Savings in the Cost of Ongoing Care Following Specialist Rehabilitation for Severe Traumatic Brain Injury in the United Kingdom. (here)] This paper showed that, as one would expect, there were no cost-savings on people admitted solely for assessment of prolonged disorder of consciousness. Moreover people discharged unable to move or feed themselves also showed no cost-savings. All other groups did.

The conclusion was: “Specialist rehabilitation proved highly cost-efficient for patients severely disabled by severe TBI, despite their reduced life expectancy, generating an estimated total of over £4 billion savings in the cost of ongoing care for this 8-year national cohort. This makes rehabilitation one of the most cost-effective interventions in healthcare and supports the case for increased access to specialist in-patient rehabilitation services nationally.

The fourth paper investigated a very different population admitted for inpatient rehabilitation – people with multiple sclerosis. [Cost-efficiency of specialist inpatient rehabilitation for adults with multiple sclerosis: A multicentre prospective cohort analysis of the UK Rehabilitation Outcomes Collaborative national clinical dataset for rehabilitation centres in England. here.]

Despite being a very different population, with a disease where progression is common and spontaneous improvement rare except immediately after a relapse, this study involving 1007 people found that all patients benefited, with the greatest savings in care costs being seen in the most dependent group. The period to recoup the cost of rehabilitation was 12-14 months in the most dependent group and 77 months in the least dependent group.

A recent paper investigated in-patient rehabilitation in neurological rehabilitation centres, not spinal cord injury centres, after spinal cord injury. [Functional outcomes and cost-efficiency of specialist in-patient rehabilitation following spinal cord injury: A multi-centre national cohort analysis from the UK Rehabilitation Outcomes Collaborative (UKROC)] (here)

This study showed that approximately a third of patients who access specialist inpatient rehabilitation following spinal cord injury (SCI) in England are managed in the Specialist Level 1 and 2 neuro-rehabilitation units, rather than in the eight designated national SCI Centres.  Despite admitting progressively more complex and dependent patients over an eight-year period, these specialist rehabilitation units continue to provide highly cost-efficient care. The mean annual savings amount to £25,500 per patient. With a mean admission rate of 425 patients each year, this would generate total savings in excess of £10 million per year for the cohort. The paper demonstrated that specialist rehabilitation services play an important, but under-recognised, role in the spinal cord injury care pathway.

These are cohort studies, as opposed to randomised trials with a control group who were simply discharged. The earlier reviews of randomised trial have shown effectiveness. These studies have the advantage of representing real-life clinical practice. They are very consistent and provide strong support for rehabilitation being cost-effective. The extent of saving is less certain, but the combination of some cost reduction and undoubted patient benefit shown in randomised studies makes a strong case for inpatient expert rehabilitation services.

Assessment forms

Many of the assessments used in UKROC were developed before the programme started. They will no be discussed specifically. They can be seen on the website here. Other measures were developed as part of the UKROC programme or in relation to the development of rehabilitation pathways initially precipitated by the Major Trauma service developments which occurred as UKROC database was developed. The following assessments are closely associated with UKROC.

The Northwick Park Dependency Scale, and
The Northwick Park Care Needs Assessment.
Both these scales are of central importance in UKROC. (here) The Northwick Park Dependency Scale, developed in the 1990s to measure nursing dependency, is widely used and has good and well established psychometric properties. (here, here) The dependency scale translates, through a computerised algorithm now built in to the UKROC database, into a directly costed measure of care needs when in the community – the care needs assessment. (here) The Care Needs Assessment can be used to estimate nursing staff needed on a ward. (here) A tool to estimate therapy staff needs has also been developed. (here)

FIM+FAM
This is the Functional Independence Measure (FIM) plus the Functional Assessment Measure (FAM); the former is used widely around the world, but the later was never fully developed by the originators and is largely used in the UK, specifically in the UKROC database. The FAM adds 12 items to the original 18-item FIM, measuring cognitive and psychosocial functions. (here) An additional module measures extended activities of daily living such as shopping, cooking, other domestic activities, and managing finances. (here)

There is extensive guidance available on line, here. Much of the work concerning these measures pre-dated UKROC, (e.g. here) but papers arising from UKROC have investigated aspects of FIM+FAM.

The psychometric properties of the Functional Assessment Measure were reported in a systematic review of studies of the FIM+FAM. This systematic review is within a paper entitled A comprehensive psychometric evaluation of the UK FIM+FAM. (here) The second half of this paper reports an analysis of data derived from 459 patients, investigating the psychometric properties directly. The analysis generally supported the use of two subscales (Motor (16 items) and Cognitive (14 items) with the EADL items forming a separate module for use where relevant to the goals of rehabilitation.

A later study [Rasch analysis of the UK Functional Assessment Measure in patients with complex disability after stroke] on 1318 patients from the UKROC database who were receiving inpatient rehabilitation after a stroke investigated its scale properties using Rasch analysis. (here) The analysis is complex (but explained in the paper). It suggests three factors exist (Motor, Communication, Psychosocial), but that with suitable weighting of each individual item’s score, the items are a single scale. The authors note that, despite several studies showing that weighted item scores give an interval scale (i.e. the scores are parametric and 10 is twice five), clinicians do not use them.

Rehabilitation Complexity Scale
This was first developed when the programme grant application was being put forward (here) but its purpose was closely linked to the UKROC, and the definitive publication, The Rehabilitation Complexity Scale: A clinimetric evaluation in patients with severe complex Neurodisability, was published in 2010. (here) Further development led to an extended version. (here) Although it is arguable whether it is a measure of complexity, (here) it has proved useful in categorising patients which was the intention. There are now four versions, for use in different circumstances, and they are all available here.

Neurological impairment set.
The Neurological Impairment Set (NIS) is a list of impairments seen in people with neurological disorders attending for rehabilitation, intended to be used both to describe patients seen and to contribute to prognostication. This scale, now called the Neurological Impairment Scale, has two versions (the second for use after trauma), and they are available here.

The paper, The Neurological Impairment Scale: reliability and validity as a predictor of functional outcome in neurorehabilitation, (here) showed reasonable psychometric properties.

The patient categorisation tool.
This assessment was devised as a measure of the “complexity of needs in a mixed population of patients presenting for specialist neurorehabilitation.”. An analysis of data from 5396 patients on the UKROC database was undertaken and reported in The patient categorisation tool: psychometric evaluation of a tool to measure complexity of needs for rehabilitation in a large multicentre dataset from the United Kingdom. (here) There was some evidence of validity, but its sensitivity and specificity were both only 75%. There seemed to be two factors: ‘physical’ and ‘cognitive/psychosocial’.

A second, later study on 8,222 patients from the UKROC database reported in Dimensionality and scaling properties of the Patient Categorisation Tool (PCAT) in patients with complex rehabilitation needs following acquired brain injury, and using Rasch analysis, showed that a unidimensional scale could be formed. (here) The scale is available here.

Rehabilitation Prescription.
The rehabilitation prescription was proposed as a way of improving rehabilitation after trauma. It is a patient-held tool setting out the patient’s individual needs for rehabilitation and the plan to provide for them.  It was intended to improve access to rehabilitation and to record unmet needs.  The National Clinical Audit of Specialist Rehabilitation following major Injury (NCASRI) (here) provides proof of principle for its use within the major Trauma networks, demonstrating that only 40% of the patients who required further  specialist rehabilitation after discharge from the major trauma centres actually got this. (here)

Over the last eight years it has slowly improved and become more used. Its potential is large, but success depends upon easy to use digital technology – the paper version is easily lost. It is now being suggested as a general tool for all patients in hospital needing rehabilitation, for example after Covid-19. A copy of the current Rehabilitation Prescription is available, combined with PICUPS (See below) from here. (The Rehabilitation Prescription is the second half of the document you download from the site.)

PICUPS.
The Post Intensive Care Unit Presentation Screen (PICUPS) was developed by the National Post-ICU Rehabilitation Collaborative (here) as a means of identifying the rehabilitation needs of people leaving the intensive care unit. Covid-19 was a major precipitant of this development. Two papers were published in February 2021: The Post-ICU Presentation Screen (PICUPS) and Rehabilitation Prescription (RP) for Intensive Care survivors Part I: Development and preliminary clinimetric evaluation. (here) and The Post-ICU Presentation Screen (PICUPS) and Rehabilitation Prescription (RP) for Intensive care survivors part II: Clinical engagement and future directions for the National Post-Intensive Care Rehabilitation Collaborative. (here)

The PICUPS has been widely tested on many patients (500+) and in 26 intensive care units. The tool has 24 items covering four domains: “a) Medical and essential care, b) Breathing and nutrition; c) Physical movement and d) Communication, cognition and behaviour.” It showed reasonable psychometric properties and seemed to detect people needing further rehabilitation input.

Implementation and other outputs

The UKROC data-base and programme have, directly or indirectly, affected many aspects of rehabilitation within the UK.

Services: commissioning, audit, delivery.
Since the end of the NIHR funded programme grant, UKROC has been commissioned by NHS England to provide its commissioning dataset. It provides quarterly activity and benchmarking reports on quality and outcomes for all Level 1 and 2 services in England. The UKROC dataset was mandated and completeness of reporting is now between 95 and 100% across the Level 1 and 2a services. The data are used for clinical purposes (tracking and monitoring), commissioning and audit and they now flow to the National Commissioning Data Repository. In April 2017, UKROC became a ‘clinical registry’, meaning that it now collects identifiable data (the NHS number) which supports tracking of individual patients to determine whether they receive the rehabilitation they need.

UKROC provides the only accurate information on activity and patient-level costs in rehabilitation. This information will become even more critical as the NHS moves into its latest overhaul of commissioning and payment for services. Devolution of commissioning from NHSE to the new Integrated Care Systems and the change from activity-based funding to block contracts (based on a blended payment model) will both require accurate data and only UKROC can currently provide this – standard NHS datasets still contain virtually no reliable data on rehabilitation.

A key focus of the programme is to provide tools that are useful and meaningful to clinicians in their daily decision-making, UKROC is currently working with NHS England and NHS Digital to review the dataset to minimise the burden of data collection while retaining the useful information – and also to make it easier to access the data for monitoring and service planning, and to link with other datasets. Future plans include the development of a cloud-based system

Trauma rehabilitation audit
One major area of shared interest has been the development of expert rehabilitation services for people after trauma. These services have been the subject of a national clinical audit, published as The National Clinical Audit of Specialist Rehabilitation for Patients with Complex Need following Major Injury.  This audit was a collaboration between the British Society of Rehabilitation Medicine, the Trauma Audit and Research Network, and UKROC. Further information about the audit, and a copy of the audit, are both available here.

The summary given was:

The report highlights a shortage of Specialist Rehabilitation beds across the country and estimates that approximately 330 additional beds are needed to meet the shortfall in capacity and relieve pressure on the acute services across the country

However, the findings also demonstrate the cost-efficiency of rehabilitation following major trauma with mean net life-time savings in the cost of ongoing care amounting to over £500,000 per patient, so that any investment in additional beds would be rapidly offset by long term savings to the NHS.

UKROC report to NIHR.
A formal report was submitted to the National Institute of Health Research in 2015. (here) It is no doubt a mine of information. Unfortunately, at 307 pages, it is rather daunting. I salute Lynne Turner Stokes in being able to put forward such a report, and I am glad that the important material has been published in smaller chunks.

This page shows what a unified multi-professional rehabilitation enterprise can achieve. The hard work of a large number of people from many different professions, organisations and location (all in England unfortunately) has delivered a range of important papers that are clinically and politically useful. Of course, Lynne Turner Stokes has been key, as she has maintained the vision, and given her energies to ensure data are not only collected, but analysed and promulgated. We should all thank Lynne, and we should also be proud of our collective achievements. I thank her personally for reviewing this page, clarifying mistakes I made, and generally improving it. Whether planned or not, her work over 20 years has been a coherent attempt to set rehabilitation in the UK upon a sound evidential basis.

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