UKROC database
In 2007 Professor Lynne Turner-Stokes applied 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 when 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.
Table of Contents
Introduction
The United Kingdom Rehabilitation Outcomes Collaboration, known universally by anyone involved as UKROC, was associated with three developments in rehabilitation services in the UK. One was developing so-called Level I, II and III rehabilitation services within the UK. Second, it provided data to create a fair costing and commissioning basis for rehabilitation. Last, it helped the development of trauma rehabilitation services. 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, is available here.
Developmental context
The foundation of the UKROC programme was a series of systematic reviews conducted in the 2000s that demonstrated the solid evidence base for the effectiveness of coordinated multidisciplinary rehabilitation. A Cochrane review (here) showed 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.
In a proof-of-principle study in 2006, Lynne Turner-Stoke et al. demonstrated that data collected in the course of ‘real life’ routine clinical practice showed rehabilitation provided value for money through savings in the cost of ongoing care. (here)
An extensive national engagement process with rehabilitation professionals from around the country followed. (here). This process led to a reasonable agreement on a set of tools that clinicians could use in routine clinical practice to measure
- an individual’s needs for rehabilitation,
- the inputs provided to meet those needs and
- the outcomes that result (in terms of improved independence.
- the combination allowed cost-efficiency to be calculated.
All the tools used in the UKROC dataset have been subject to rigorous psychometric validation, summarised in the programme report. (here)
The output associated with and derived from the programme covers many aspects, and I will cover them in separate sections.
Costing and contracting studies
In 2012 three papers were published describing the cost of rehabilitation services. They give the foundation of current payments. The first (here) was a Rehabilitation in Practice article in Clinical Rehabilitation on “International case-mix 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 following 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 that staff costs accounted for two-thirds of costs. Direct costs were 83%, and only 7% were overheads. Variations between units arose from differences in staff costs.
The other paper, “Healthcare tariffs for specialist inpatient neurorehabilitation services: rationale and development of a UK case-mix and costing methodology.” (here), describes and explains how commissioners and providers of rehabilitation services could use the data to calculate a fair price for services. Commissioners still use the method of adjusting staff costs in line with changes in payment rates.
Cost and benefit studies
Following the development of a costing model, agreed upon and used by NHS England in commissioning and paying for inpatient rehabilitation services, the UKROC team wrote a series of five papers on cost-effectiveness. These used 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 spell. The study authors calculated how long it was before the decline in ongoing daily care costs exceeded the rehabilitation costs. The answer was 14 months for high-dependency patients and 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 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 expected, there were no cost savings for people admitted solely to assess prolonged disorders 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 inpatient rehabilitation services nationally.“
Despite being a very different population, with a disease where progression is typical and spontaneous improvement rare except immediately after a relapse, this study involving 1007 people found that all patients benefited, with the most significant savings in care costs 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 inpatient rehabilitation in neurological rehabilitation centres, not spinal cord injury centres, after spinal cord injury. [Functional outcomes and cost-efficiency of specialist inpatient rehabilitation following spinal cord injury: A multicentre national cohort analysis from the UK Rehabilitation Outcomes Collaborative (UKROC)] (here)
These are cohort studies instead of randomised trials with a discharged control group. The earlier reviews of randomised trials 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 cost reduction and undoubted patient benefit shown in randomised studies makes a strong case for inpatient expert rehabilitation services. The interventions are those outlined by me here.
Assessment & data collection tools
Many of the assessments used in UKROC were developed before the programme started. I will not discuss them specifically. They can be seen on the website here. Other measures were created as part of the UKROC programme or concerning the development of rehabilitation pathways initially precipitated by the Major Trauma service developments, which occurred as the 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 excellent and well-established psychometric properties. (here, here) Through a computerised algorithm now built into the UKROC database, the dependency scale translates into a directly costed measure of care needs in the community – the care needs assessment. (here) The Care Needs Assessment can estimate the nursing staff required on a ward. (here) A tool to assess therapy staff needs has also been developed. (here)
FIM+FAM
This assessment is the Functional Independence Measure (FIM) plus the Functional Assessment Measure (FAM); the former is used widely around the world, but the latter was never fully developed by the originators and is used mainly 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 online here. Much of the work concerning these measures pre-dated UKROC (e.g. here), but papers from UKROC have investigated aspects of FIM+FAM.
A later study [Rasch analysis of the UK Functional Assessment Measure in patients with a complex disability after stroke] on 1318 patients from the UKROC database who received inpatient rehabilitation after a stroke investigated its scale properties using Rasch analysis. (here) The investigation is complex (but explained in the paper). It suggests three factors exist (Motor, Communication, Psychosocial), but with a suitable weighting of each item’s score, the items are on 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 ten is twice five), clinicians do not use them.
Rehabilitation Complexity Scale
Neurological impairment set.
The Neurological Impairment Set (NIS) is a list of impairments seen in people with neurological disorders attending rehabilitation, intended to be used both to describe patients seen and 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 it had good psychometric properties.
The patient categorisation tool.
The UKROC team devised this assessment to measure 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 validity evidence, but its sensitivity and specificity were only 75%. There seemed to be two factors: ‘physical’ and ‘cognitive/psychosocial’.
Rehabilitation Prescription.
The rehabilitation prescription was put forward to improve rehabilitation after trauma. It is a patient-held tool setting out the patient’s needs for rehabilitation and the plan to provide for them. It is 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 got this. (here)
Over the last eight years, the Rehabilitation Prescription has slowly improved and become more used. Its potential is considerable, but success depends upon easy-to-use digital technology – the paper version is easily lost. It is now considered a general tool for all hospital patients needing rehabilitation, for example, after Covid-19. A copy of the current Rehabilitation Prescription is available, combined with PICUPS (See below), and it is available 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) to identify the rehabilitation needs of people leaving the intensive care unit. Cov d-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 patients (500+) 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 good psychometric properties and detected people needing further rehabilitation input.
Prolonged Disorders of Consciousness
People with a prolonged disorder of consciousness are not diagnosed or registered on healthcare diagnostic data systems; they will be labelled with a causative injury. The UKROC database includes many patients admitted to assess their prolonged disorder of consciousness because national guidance recommends that.
The initial study used data from 312 (of 388) patients admitted to the Northwick Park Hospital Regional Rehabilitation Centre with a clinically confirmed diagnosis of a prolonged disorder of consciousness. (Prolonged disorders of consciousness: identification using the UK FIM + FAM and cohort analysis of outcomes from a UK national clinical database.) The data collected on the FIM + FAM scores were analysed to identify scores associated with being in the so-called vegetative state, minimally conscious minus, minimally conscious plus and emerged (from PDOC) states. This allowed an algorithm to be developed to identify such patients within the database.
The second part of this study used the algorithm to identify patients seen in any of the 68 units providing data. Between 2011 and 2020, 2,384 patients were seen. After the initial two years (2011-2012), the number admitted each year varied between 289 and 364. Of these, 43% emerged from their prolonged disorder of consciousness, but the remainder did not. The care cost of patients remaining unconscious was not altered, but for the 43% who improved, lifetime care costs were reduced by £436,000 per patient. Considering all patients admitted unconscious, the net saving over a lifetime was £167,000 per patient.
The results found that data from the Motor part of the neurological impairment set and the Patient Classification Tool complex disability, diagnosis and behaviours scales were the main factors predictive of emergence.
These results cannot be used to predict emergence with any certainty. They demonstrate factors that increase or reduce the probability of emergence and that large data sets can be mined to generate hypotheses for testing in other populations.
Implementation and other outputs
The UKROC database 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, NHS England has commissioned UKROC to provide its commissioning dataset. UKROC 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 currently collects identifiable data (the NHS number), which supports tracking 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 approaches its latest overhaul of commissioning and payment for services. The 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 require accurate data. 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 valuable and meaningful tools 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 valuable information – and also to make it easier to access the data for monitoring and service planning and to link with other datasets. Fut re plans include the development of a cloud-based system.
Trauma rehabilitation audit
One central 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 Needs following Major Injury. The 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 lifetime savings in the cost of ongoing care amounting to over £500,000 per patient, so long-term savings would rapidly offset any investment in additional beds to the NHS.
UKROC reports
UKROC submitted a formal report 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 for writing such a report, and I am glad that the critical material has been published in smaller chunks.
A second six-year report (UK Rehabilitation Outcomes Collaborative (UK ROC) Six-year report 2015-2021) describes work 2015-2021 and has in Appendix 8 (page 72) a list of key publications. You can download it.
Conclusion
This page shows what a unified multi-professional rehabilitation enterprise can achieve. The hard work of many people from many different professions, organisations and locations (all in England, unfortunately) has delivered a range of important papers that are clinically and politically useful. Of course, Lynne Turner Stokes has been critical to the success of this enterprise, as she has maintained the vision and given her energies to ensuring data are collected, analysed, and promulgated. We should all thank Lynne, and we should also be proud of our collective achievements. I thank her for reviewing this page, clarifying my mistakes, 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.
