Outcome Measures in Rehabilitation

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1 NATIONAL AGEING RESEARCH INSTITUTE Incorporated A G Outcome Measures in Rehabilitation Project Report August 2001

2 Outcome Measures in Rehabilitation Project Report National Ageing Research Institute Robyn Smith, Peteris Darzins, Colin Steel, Kate Murray, Deborah Osborne, Belinda Gilsenan August 2001

3 Acknowledgements The project team gratefully acknowledges the following people: Rehabilitation Service Providers in Victoria: Almost two hundred rehabilitation staff, managers and others have contributed to this project. In particular, we would like to acknowledge the staff of the rehabilitation services who participated in focus groups, field-testing, training and feedback sessions for their generous contributions and sharing of ideas. Members of the Advisory Group: Ms Janet Laverick, Manager Sub-Acute Care and Continuity, Acute Health, DHS (Chair) Mr Simon Moy, Manager, Sub-Acute Unit, Acute Health, DHS Ms Basia Sudbury, Project Officer, Sub-Acute Unit, Acute Health, DHS Ms Aileen Alexander, Manager Ambulatory Programs, BECC/Northern Health Ms Joy Arnot, Manager, Dandenong CRC Ms Peta Harten, Manager, Home Rehabilitation, Grace McKellar Centre, Geelong Dr Toni Hogg, Rehabilitation Consultant, Grace McKellar Centre Ms Wendy Hubbard, Allied Health Director, Ballarat Health Service Dr Joe Ibrahim, Department of Epidemiology and Preventative Medicine, Monash University Ms Joan Kerr, Speech Pathologist, Home Rehabilitation Program, Grace McKellar Centre Ms Janet Laverick, Manager Sub-Acute Care and Continuity, Acute Health, DHS (Chair) Mr Simon Moy, Manager, Sub-Acute Unit, Acute Health, DHS Ms Jaye Peterson, Manager CRC, Peter James Clinic/ Ann Leembruggen, Chief OT Peter James Centre Assoc Prof Tony Snell, Consultant Physician, Centre for Rural Rehabilitation & Aged Care, Anne Caudle, Bendigo Ms Janne Williams, Manager, Allied Health Services, Southern Health Dr Fran Wise, Rehabilitation Consultant, Caulfield General Medical Centre Department of Human Services staff: Janet Laverick Simon Moy Basia Sudbury Amanda van Wingaard Therese Barton Outcome Measures in Rehabilitation Final Report August 2001

4 NARI Staff Associate Professor Zeinab Khalil, Interim Director Staff of the Public Health Division and the Education Division for their patience and support throughout this project. Others The developers and researchers of the tools reviewed and included in this project who provided feedback and contributions. Outcome Measures in Rehabilitation Final Report August 2001 i

5 Contents Acknowledgements... Contents... ii Executive Summary...iv Introduction... iv 1 - Introduction... 1 What is rehabilitation?... 1 What is a health outcome?... 2 Background to the project Project Aims... 5 Scope Background... 7 Measurement of health care... 7 Setting the scene the purpose of measurement... 8 How to... 9 The incentives of measurement The context of rehabilitation Current outcome measurement in rehabilitation settings Issues in measurement Methods Individual consultations Group consultations Measurement review and selection Field Testing & Feedback Rehabilitation in Victoria current practice in measurement Global outcome measures currently used in rehabilitation The Development of an Outcome Measures Framework for Rehabilitation WHO International Classification as a framework for measurement Basis of the Victorian Rehabilitation Services Measurement Framework Selection of outcome measures for review Format for the reviews Refinement of evaluation criteria of measures Results of Field Testing Overview Rationale for the field test Instruments chosen FIM scoring criteria Field Test: Patterns of change in activity limitation and participation restriction 73 Discussion Summary of Focus Groups Summary ii Outcome Measures in Rehabilitation Final Report August 2001

6 Summary Consultations and Feedback Overview Results Discussion Summary Discussion and Conclusions Why measure? What currently happens? What to measure Is there a tool? Implications of measuring The way forward Summary References Appendix 1 - Table of reviewed measures Appendix 2 Consultation Interview Guide Outcome Measures in Rehabilitation Final Report August 2001 iii

7 Executive Summary Introduction In this era of Evidence Based Practice increased attention is paid to the assessment of outcomes of interventions. A clear understanding of the outcomes of interventions is required to be able to judge the effectiveness of interventions and to be able to judge the efficiency of programs. The Evidence Based Practice approach has also come to Rehabilitation. It has been apparent for some time that there is a need to develop and implement a suitable process for measuring the outcomes of rehabilitation. This project was commissioned to confirm the need to measure the clinical outcomes of rehabilitation and to determine ways that this could be done. The project consisted of a review of the literature which was guided by expert opinion, a qualitative survey of practitioners in the field, small scale data gathering to provide proof of concept data, limited exploration by the field of possible additional outcome measures, and the structured reflections of a carefully selected advisory panel. The review of the literature and of expert opinion showed: there is a conceptual framework which can be used. This is the International Classification of Impairments Disabilities and Handicaps, in its first and second iterations, developed by the World Health Organisation. in Victoria data collection for centralised reporting of clinical outcomes is limited to disability (activity limitation) measures. rehabilitation services expend considerable effort on the reduction of handicap (participation restriction) in addition to the reduction of disability (activity limitation). in a substantial proportion of cases there is a marked difference between disability (activity limitation) and handicap (participation restriction) measures. since effort expended in rehabilitation services on reduction in handicap (participation restriction) is not recorded, the services appear less effective and less efficient than they really are. Furthermore, the missing information limits manager s ability to manage the rehabilitation services. This seems true at the level of individual services, programs and the entire rehabilitation system. The qualitative review of practitioners in the field showed: many practitioners are frustrated that managers and funders have a limited understanding of what the practitioners do and how their actions improve the health status of their patients. iv Outcome Measures in Rehabilitation Final Report August 2001

8 practitioners believe the centrally collected data reflect their actions poorly. In particular practitioners are concerned that a new funding model has been introduced that does not appear to respect the reality that much effort is expended issues other than personal care disability (activity limitation). practitioners would like to have a system of measuring outcomes that more adequately reflects the clinical outcomes in their services. However, practitioners are apprehensive about the possibility of needing to collect data that are of no relevance to them, the workload implications of any data collection, and about the possibility of aggregated data being naively misinterpreted. Small scale data gathering to provide proof of concept data was done in two inpatient rehabilitation settings. The disability (activity limitation) and personal-care handicap (participation restriction) profiles of inpatients were described on admission and then weekly until discharge. In 22% there was a clear separation between the disability (activity limitation) and personal-care handicap (participation restriction) profiles. This shows that in these patients disability measures alone, such as the Barthel Index or the Functional Independence Measure, do not reflect faithfully the overall clinical condition of the patient. Therefore judgements of effectiveness and of efficiency based on disability measures alone are not appropriate in these cases. Furthermore, the use of severely limited data limits managers ability to understand the strengths and weaknesses of particular services and the ability to appreciate the barriers to effective clinical practice. An exploration by the field of several outcome measures was completed. Using the WHO ICIDH it was apparent that a measure of handicap needed to be added to current disability measurement using the Barthel Index. Four possibly suitable candidate measurement tools were identified. These are the Handicap Assessment Resource Tool (HART), London Handicap Scale (LHS), Return to Normal Living Index(RNL) and the Systéme de Mesure de l Autonomie Fonctionnelle (SMAF) (Functional Autonomy Measuring System). Selected rehabilitation services were invited to learn about the tools and to then select some tools for pilot-testing. Two of the tools, the HART and the SMAF were considered suitable for further consideration by the field.. A carefully selected advisory panel was given the opportunity to scrutinise the logic of the project, the approach to testing and the conclusions of the project. The most noteworthy input of the advisory panel was the strong and unanimous rejection of the possibility that the status quo could be maintained. Outcome Measures in Rehabilitation Final Report August 2001 v

9 The advisory panel considered that further testing and evaluation was needed to choose one or the other of the HART or the SMAF. The panel recommended large scale field testing with attention paid to both the clinical utility and the administrative utility of the tools. Next steps. The National Ageing Research Institute has prepared a proposal for field testing, along the lines suggested by the Advisory Panel. vi Outcome Measures in Rehabilitation Final Report August 2001

10 Outcome Measures in Rehabilitation Final Report August 2001 vii

11

12 1 - Introduction The services provided in the Victorian sub-acute care system are varied and complex. Rehabilitation services, the focus of this report, comprise a wide range of multidisciplinary programs in sub-acute care. They range from a single consultation attendance at an outpatient clinic through to long-term, interdisciplinary rehabilitation interventions provided over a number of months in hospital, in the home and various outpatient settings. Determining the quality and outcomes of rehabilitation interventions is accordingly varied and complex. The wide range of possible viewpoints from which service quality and outcome can be assessed adds further complexity. There is an extensive literature on the measurement of outcome in health care. This project focuses on discrete elements of that literature, within the context of current clinical practice in Victorian rehabilitation services. The main focus is on global measures of outcome that have the potential to reflect the combined interventions of rehabilitation teams. In addition, the emphasis rests on evaluating clinical outcome at an aggregated service level to enable service monitoring and planning. Underpinning the project is a requirement to identify measures that could supplement, rather than replace, currently used system-wide measures in order to capture more adequately the outcome for rehabilitation clients. The setting for the project is adult rehabilitation services in Victoria including inpatient rehabilitation, home based rehabilitation services and community rehabilitation centres. This report describes the current issues surrounding the identification and measurement of clinical outcomes in rehabilitation settings in Victoria. It describes the methods, results and recommendations of a project that aimed to develop a framework for measurement in these settings. What is rehabilitation? Rehabilitation is a specialist area of health care that aims to improve function and/or prevent deterioration of function to bring about the highest possible level of independence, physically, psychologically, socially and economically, to maximise quality of life, and to minimise the long-term health care needs and community support needs of these people. (Australasian Faculty of Rehabilitation Medicine (Victorian Branch) 1997, p2). It is a coordinated, multidisciplinary service that is quite distinct in many regards from acute medicine, being concerned not only with patient s physical recovery, but also with reintegrating the individual into the community. Rehabilitation is Outcome Measures in Rehabilitation Final Report August

13 involved with.the prevention and reduction of disability and handicap arising from impairments; and the management of disability from a physical, psychosocial and vocational viewpoint. (Australasian Faculty of Rehabilitation Medicine (Victorian Branch) 1997) Measuring the quality and outcome of rehabilitation services is of long-standing interest to clinicians, health care providers, health care purchasers, researchers, government and consumers. There is a great deal of effort expended locally, nationally and internationally on this area of work. However, the majority of the energy to date in Victoria, and more broadly across Australia, has been devoted to the development of indicators of quality that focus on the care process and on ways of developing payment systems that will standardise and contain health care costs. Less effort has been devoted to the adequate measurement of clinical outcomes, and no clearly satisfactory outcome assessment system exists. This project aimed to begin to address this gap. What is a health outcome? The definition of a health outcome is: A change in an individual, a group, or population, which is attributable to an intervention or series of interventions (AHMAC, 1993). The key defining features of a health outcome, and as a consequence, health outcome measures are change, attribution and intervention. Thus, changes in the individual s health status can be identified and attributed to the intervention aimed at influencing that health status. This is a critical point guiding the identification of appropriate measures for use with those in rehabilitation settings, many of whom have chronic or incurable conditions. The focus of outcome measurement needs to be relevant to the aims and focus of the intervention. Background to the project Sub-acute care is provided within a distinct speciality service system in Victoria. In recent years there has been increasing attention on the development of sub-acute services, particularly emphasising the continuum of care and interrelationships between acute, sub-acute, community and residential aged care services. Specialist rehabilitation services are well established within the Victorian sub-acute care system and include: Inpatient rehabilitation Home Based Rehabilitation Services Community Rehabilitation Centres 2 Outcome Measures in Rehabilitation Final Report August 2001

14 Many clinicians would also argue that rehabilitation interventions are provided through other sub-acute programs such as Geriatric Evaluation and Management (GEM) services. The definitions of rehabilitation and GEM services are currently under review by a Department of Human Services working group. In recent years much of the developmental work occurring in sub-acute care and rehabilitation programs has focused on developing service guidelines, on developing and introducing process measures and on measurement that has contributed to the development of a casemix funding model for inpatient services (CRAFT). These activities have encouraged changes in the process of care, and have also focussed the attention of service providers on the importance of measurement and on the implications of routine measurement and reporting. The work done to develop process measures served to also highlight the importance of measuring outcomes. Anecdotal evidence suggested that there was a high level of interest in exploring measures of outcome. In particular, this was seen as a way of better explaining and justifying the interventions provided in rehabilitation. The current project was developed in response to a number of issues and interests: Clinicians identified that measuring process of care alone was not sufficient to reflect the value of their input to consumers of rehabilitation services; A need, identified by government, to better measure and describe the outcomes of rehabilitation care and to enable the evaluation of quality, efficacy, effectiveness and efficiency of services; With the review and redevelopment of sub-acute services, within the context of the continuum of programs, it is important to be able to measure and describe the contribution of each component to the overall care process; There had been an emphasis on developing measures of the process of care and there was clear acknowledgement that this provided only part of the picture when describing care; The development and implementation of the funding model for inpatient rehabilitation services is based on a measure of personal care disability. Whilst this is an important component of rehabilitation treatment, it is not the only area of intervention. There was a need to find measures that could supplement the existing measure in order to better describe care and outcomes. Outcome Measures in Rehabilitation Final Report August

15 The original context of this project emphasised the development of a general understanding of rehabilitation and measurement at a fundamental level with a view to subsequent development of measures and measurement approaches. In the current context of increasing sub-acute service demand it is particularly important that data are available that inform service planning and management. The imperative for the Department of Human Services, service providers and individual clinicians is to better describe and account for resource use and distribution, with an emphasis also on improving the quality of care. A framework for measurement and identification of measures with the potential for application in Victoria contributes significantly towards achieving these goals. 4 Outcome Measures in Rehabilitation Final Report August 2001

16 2 - Project Aims The aims of this project were to: Review outcome measures relevant to rehabilitation, with an emphasis on global measures of outcome rather than discipline specific or subspeciality specific measures; Identify issues in the current practice of outcomes measurement in Victorian settings; Appraise the practical considerations, purpose, theoretical and empirical evidence available on a selection of global measures of outcome so as to inform a framework for measurement in rehabilitation in Victorian settings; Develop a rehabilitation outcome measurement framework; Field test and seek feedback on global measures that have potential for application in Victorian settings. Specific Objectives: To examine current practice of outcomes measurement in a range of rehabilitation settings in Victoria; To identify gaps and issues in current practice of outcomes measurement in Victorian rehabilitation settings with particular reference to the framework for measurement; To identify the requirements from health professionals and government for outcome measurement; To identify barriers and enablers to trialing or introducing new measures; To document the purpose, theoretical and empirical evidence underpinning a selection of global outcome measures; To consult with service providers for feedback on selected measures. Scope The settings for the project are adult rehabilitation services in Victoria, including: inpatient rehabilitation; home based rehabilitation; community rehabilitation centres. There is an extensive literature on the measurement of outcomes in health care. This project has focused on discrete elements of that literature, within the context of Outcome Measures in Rehabilitation Final Report August

17 current clinical practice in Victorian rehabilitation services. The main focus was on global measures of outcome that have the potential to reflect the combined interventions of rehabilitation teams. In addition, the emphasis rested on evaluation of clinical outcome at an aggregated service level to enable service monitoring and planning, whilst also aiming for measures that will provide clinically useful information for individual treatment. Underpinning the project was a requirement to look for measures that could supplement, rather than replace, currently used system-wide measures in order to capture more accurately the outcome for rehabilitation clients. In addition, the potential burden of measurement that use of particular outcome measures would impose was considered. This respects the reality that the clinical service principally aims to provide benefit to patients. Excessively onerous measurement approaches are not practical for routine application or for reporting at a service or program level. 6 Outcome Measures in Rehabilitation Final Report August 2001

18 3 - Background Measurement of health care Measurement currently occurs throughout the health care system for a range of purposes including clinical management, quality monitoring and improvement, financial monitoring and management. Healthcare quality can be evaluated in three main areas of performance: Structural performance observations relate to the environment within which care is delivered Process performance the way in which care is delivered Outcome performance the achievements of delivered care (Boyce, McNeil et al. 1997) Structural performance is measured through systems such as EQuIP and hospital accreditation. The development of a series of generic briefs for sub-acute care in Victoria also contributes to the provision of buildings and environments of an appropriate quality and standard (DHS, 1999). Over recent years there has been extensive development of clinical process measures, particularly in sub-acute care in Victoria. For example, clinical performance indicators have been developed for inpatient rehabilitation by the Australian Faculty of Rehabilitation Medicine in conjunction with the Australian Council on Healthcare Standards (ACHS) (Australian Council on Health Standards 2001). The Department of Human Services has also funded the development of indicators for specialist clinic services, modelled on the ACHS approach (Smith 1997; Department of Human Services Acute Health Division 2000; Department of Human Services Acute Health Division 2000; Department of Human Services Acute Health Division 2000). It has been clear throughout this activity that good process is linked to, but does not necessarily equate with, good outcomes. Nevertheless, there was some need to standardise care practices to help assure a reasonable level and quality of service across the system. It was also clear that the clinicians and others involved in developing these process indicators perceived that these measures were not adequate to reflect the totality of care (Smith 1996). Care outcomes are strongly endorsed as being more directly relevant to clinicians and their clients, but also as being more difficult to measure. Brummel-Smith (1993) identified the difficulties associated with measuring the effectiveness of rehabilitation because the clients responses to their conditions can affect the outcome, regardless of the quality of the rehabilitation process. Wade (1999) suggests that before trying to analyse outcome data, an expansion in what is Outcome Measures in Rehabilitation Final Report August

19 measured in rehabilitation is needed to include not only a client s impairments but also their social, physical and personal contexts. Setting the scene the purpose of measurement The successful selection and implementation of outcome measures is critically dependent on an adequate understanding, from the outset, of the practical application of any identified measures. Wade (1999) comments that providers and purchasers may identify different objectives of a service and therefore also identify different outcome measures to use. Table 3.1 provides an excellent example of the groups who may wish to use measures of health outcome and their purposes in doing so. Table 3.1. Disability Interest Groups and their Measurement Purposes Interest group Measurement purpose People with a disability and To establish level of need for services their advocates To better match services with people's goals and aspirations Providers of support services Providing appropriate supports Prioritising resources Outcome comparisons Funders and planners Assessment of relative need for resources across diverse groups To identify unmet need Those responsible for disability To protect people who may be disadvantaged by rights legislation exclusion, inclusive broad definitions are therefore preferred Those responsible for income To clearly define the eligibility criteria and limit the security policy, e.g. number of people accessing programs, therefore, compensation & social security narrower definitions are preferred Clinicians To gauge nature and severity of disability and design appropriate interventions To evaluate outcomes Statisticians To be able to compare data across service types and national and international boundaries for various development and assessment processes Madden & Hogan (1997 p. 2-3) 8 Outcome Measures in Rehabilitation Final Report August 2001

20 Essentially, there are four main purposes for measurement: To judge the efficacy of an intervention does it work in the ideal world To judge the effectiveness of an intervention does it work in the real world To judge the efficiency of an intervention what are the costs of achieving the intervention/outcome To enable quality monitoring and service development When considering the purpose of measurement it is also important to identify if the focus is at the level of individual experience or at a service or program level. Ideally, a measure of outcome that is suitable both for planning and resource allocation at a program level would also be suitable at an individual level for care planning. How to The collection of outcome data needs to be integrated with the usual clinical assessment and review process (Hindle 1998; LePoer, Mayo et al. 1999; Randall and McEwen 2000). Any measure adopted would ideally have relevance to clinicians and clients as a regular part of the rehabilitation assessment and treatment process. The information gleaned for administrative and planning purposes would essentially be a useful by-product of the clinical process. This approach, of adopting measures that have both clinical and administrative relevance, has the potential to minimise the burden of data collection on agencies, clinicians and clients. If a standard measure of outcome is perceived by agencies to be adding value to their service provision it is more likely to be accepted and appropriately implemented. This may improve the completeness, accuracy and relevance of the data available for service management and service planning (Hindle 1998). Although routine collection of outcome measures is a laudable goal, it is not a simple task to achieve. LePoer and colleagues (1999, p 204) suggest that: The necessity of doing outcome assessments routinely for all patients or clients is no longer questioned. How to actually implement such a program, however, is not as easily agreed upon and achieved. The introduction of a new measure for routine collection requires substantial system change. Moss et al (1998) suggest that participation in the change process is particularly important.in professions in which people are expected to exercise a great deal of independent judgement. (p S1). Drawing on the work of Berwick and colleagues, they describe four key barriers to quality improvement and change: time, territory, tradition and trust. Achieving the change required to implement new outcome measurement practices will take a concerted effort, training and support from government, health service managers and clinicians to overcome these potential barriers. Outcome Measures in Rehabilitation Final Report August

21 The incentives of measurement The incentives provided by the process of measurement itself can be substantial. If funding of the service is linked to the completion of particular sets of data, then the efforts of providers will tend to focus on obtaining the data necessary to ensure continued funding. The introduction of measurement tools should therefore be carefully considered in order to ensure that any potentially unintended incentives are minimised. Davies and Crombie (1997) also suggest that what is measured is often what is deemed to be measurable and that other important outcomes which are more difficult to measure are excluded. A number of authors assert that although indicators of self-care and mobility predominate outcomes measurement, most rehabilitation programs have wider treatment goals (Keith 1995; Lohr 1997; LePoer, Mayo et al. 1999; Post, de Witte et al. 1999; Randall and McEwen 2000). Keith (1995, p78) suggests that.if we continue to concentrate on common physical functions in outcomes reports, the outside world will come to expect and perhaps only pay for work on these skills. The context of rehabilitation The major focus of the development of instruments to measure health care at a system wide level has been on the measurement of process and of the parts of outcome that are relatively straight forward to measure using quantitative methods. For example, the number of procedures performed, the timing of the procedures performed, whether infection occurred, whether the person was alive at the completion of treatment (discharge) or whether they were readmitted to hospital within 28 days post-discharge. In Australia this has been achieved through the implementation and use of routinely collected system-wide data on what have been considered to be core aspects of health care. The Australasian Faculty of Rehabilitation Medicine (AFRM), working with the Australian Council on Healthcare Standards (ACHS) developed a set of clinical performance indicators for use in evaluating the quality of care for inpatient rehabilitation settings. The Royal Australasian College of Physicians has established similar guidelines for geriatric medicine services. These define measures of the process of care that include an expectation that clients will be assessed on admission to and discharge from a rehabilitation service using an appropriate functional measure. The ACHS documents recommend that assessment of both physical and cognitive function be completed using a standard measurement tool. A number of tools are given as examples, but none is compulsory in rehabilitation settings. 10 Outcome Measures in Rehabilitation Final Report August 2001

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