Who wants to walk? Preferences for recovery after SCI: a longitudinal and cross-sectional study.

STUDY DESIGN: Cross-sectional and longitudinal direct observation of a constrained consensus-building process in nine consumer panels and three rehabilitation professional panels. OBJECTIVES: To illustrate differences among consumer and clinician preferences for the restoration of walking function based on severity of injury, time of injury and age of the individual. SETTING: Regional Spinal Cord Center in Philadelphia, USA. METHODS: Twelve panels (consumer and clinical) came to independent consensus using the features-resource trade-off game. The procedure involves trading imagined levels of independence (resources) across different functional items (features) at different stages of recovery. RESULTS: Walking is given priority early in the game by eight out of nine consumer panels and by two out of three professional panels. The exception consumer panel (ISCI<50) moved walking later in the game, whereas the exception professional panel (rehRx) moved wheelchair early but walking much delayed. Bowel and Bladder was given primary importance in all panels. CONCLUSIONS: Walking is a high priority for recovery among consumers with spinal cord injury irrespective of severity of injury, time of injury and age at time of injury. Among professional staff, walking is also of high priority except in rehabilitation professionals.

Untangling function: measuring the severity, type and meaning of disabilities.

In this commentary, we argue that the current biomedical and psychosocial models of illness that form the basis of medicine are insufficient to describe this interface. We offer a biopsycho-ecological model of illness and disability referred to as health environmental integration (HEI) as a framework intended to encourage a more complete understanding of disability as arising at the interface between the person's internal and external worlds. By this model, person-level functional abilities as well as the subjective meaning of those functions result in part from interactions created by the exchange of energy and information between the person and his environment. Three components are essential in measuring function: severity of deficit, type of deficit, and meaning. We present functional status staging as an approach to measuring severity and type of deficit, and recovery preference exploration as a way to measure meaning. Rehabilitation medicine can come closer to bridging the gap between biological and the subjectively-based aspects of human function, by measuring all three concepts.

Cross-cultural differences in preference for recovery of mobility among spinal cord injury rehabilitation professionals.

STUDY DESIGN: Direct observation of a constrained consensus-building process in three culturally independent five-person panels of rehabilitation professionals from the US, Italy and Canada. OBJECTIVES: To illustrate cultural differences in belief among rehabilitation professionals about the relative importance of alternative functional goals during spinal cord injury (SCI) rehabilitation. SETTING: Spinal Cord Injury Units in Philadelphia-USA, Rome-Italy and Vancouver-Canada. METHODS: Each of the three panels came to independent consensus about recovery priorities in SCI utilizing the features resource trade-off game. The procedure involves trading imagined levels of independence (resources) across different functional items (features) assuming different stages of recovery. RESULTS: Sphincter management was of primary importance to all three groups. The Italian and Canadian rehabilitation professionals, however, showed preference for walking over wheelchair mobility at lower stages of assumed recovery, whereas the US professionals set wheelchair independence at a higher priority than walking. CONCLUSIONS: These preliminary results suggest cross-cultural recovery priority differences among SCI rehabilitation professionals. These dissimilarities in preference may reflect disparities in values, cultural expectations and health care policies.

The story of function-related groups--please, first do no harm.

In November 2000, the Health Care Financing Administration (HCFA) published a proposed rule announcing their intention to implement a prospective payment system for rehabilitation inpatient facilities and hospital units. In this system, payments are to be scaled to patient complexity through a classification system referred to as case-mix groups (CMGs) modeled after the Functional Independence Measure-Function Related Groups, which were developed from the FIM instrument. Under the HCFA proposal, CMGs will be derived from the Minimum Data Set for Post-Acute Care (MDS-PAC). This shift to the MDS-PAC, with little scientific evidence to support it, can have a negative impact on how the system expresses patient need, on how patients access services, and on the equity of hospital payments.

Inpatient rehabilitation after stroke: a comparison of lengths of stay and outcomes in the Veterans Affairs and non-Veterans Affairs health care system.

BACKGROUND: Patients have longer lengths of hospital stay (LOS) in VA medical centers than in the general health care system. OBJECTIVE: The objective of this study was to determine whether resource use and outcome differences between VA and non-VA inpatient rehabilitation facilities remain after controlling for patient and medical care delivery differences. DESIGN: This analysis involved 60 VA inpatient rehabilitation units and 467 non-VA rehabilitation hospitals and units. Multivariate adjusted resource use and patient outcome differences were compared across setting within patients grouped by severity of disability at admission through assignment to the Function Related Group (FRG) patient classification system. SUBJECTS: The study included 55,438 stroke patients. MEASURES: Study measures were LOS, functional status at discharge, and community discharge. RESULTS: The VA serves a higher proportion of patients who are single, separated, or divorced; are unemployed or retired as a result of disability, and are not white (P < 0.0001). These traits tended to be associated with longer LOS, lower functional outcomes, and reduced rates of community discharge. After adjusting for these and other differences, depending on FRG, average LOS remained from 30% to 200% longer in the VA centers (P < 0.05); average functional outcomes were significantly higher in 8 and lower in 2 FRGs (P < 0.05); and community discharge rates were lower in 12 FRGs (P < 0.05). CONCLUSIONS: While certain variables accounted for some of the observed differences in resource use and outcomes, differences remained after adjustment. Fewer incentives for cost containment and less support in patients' home environments may be among the most important unmeasured determinants of VA differences.

Defining the population, treatments, and outcomes of interest: reconciling the rules of biology with meaningfulness.

Population characteristics, treatment needs, therapeutic interventions, and outcomes are inextricably linked. To appreciate the treatment needs and outcomes of populations served by rehabilitation medicine, it is essential to understand how specific conditions impair mental and physical functioning, given the environments within which people choose to live. States of the mind and body combine with the characteristics of the man-made and natural world and the social infrastructure to yield disabilities and, thus, shape the demand for rehabilitation services. The 1997 draft of ICIDH-2: International Classification of Impairments, Activities, and Participation (ICIDH-2) is described as an approach to population definition and outcome assessment. A new and evolving model referred to as the spheres of human-environmental integration (HEI) is applied to expressing the nonlinear and overlapping relationships among the ICIDH-2 dimensions. HEI is defined as the individual's potential for meaningful physical and mental activity as determined by physical and mental capabilities in relationship to the man-made and natural worlds, social expectations, and available resources. HEI can be expanded by reducing disabilities through medical and rehabilitation interventions and by eliminating environmental barriers. This dual approach implies a need to integrate rehabilitation sciences with the principles of independent living, which view disablement as a function of the environment. The ICIDH-2 dimensions combined with HEI are used to define populations and to study the mechanisms and effects of alternative treatments through various techniques of case-mix measurement, disability staging, and utility assessment.

Comparing VA and non-VA health care: the case of post-stroke rehabilitation.

The Department of Veterans Affairs (VA) runs the largest integrated health system in the country, and provides care to nearly 4 million patients each year. It has been dogged by persistent doubts about its efficiency and quality of care, despite numerous quality improvement programs and an extensive reorganization in 1995. In fact, recent studies have found that health care in the VA compares favorably with non-VA systems, in areas such as preventive care and treatment for acute myocardial infarction. This Issue Brief summarizes a comparison in another area-inpatient rehabilitation for stroke- and highlights the difficulty and complexity of assessing quality across systems of care.

Protection of human subjects with disability: guidelines for research.

Typically, protection of human subjects is a shared responsibility involving the local institutional review board (IRB) and the clinical investigator, guided by federal and state law as well as local organizational policy. The IRB screens protocols to ensure subjects' safety by making sure that risks are acceptable and do not outweigh benefits. However, the recruitment of subjects, as well as obtaining consent, is the principal investigator's responsibility. Through the process of informed consent, the clinical investigator is obliged to ensure that each subject understands all treatments proposed and their potential benefits and risks. Achieving truly informed consent from people with major developmental, physical, sensory, communicative, or cognitive disabilities may be particularly difficult. Spurred on by increasing research of relevance to rehabilitation medicine and the patients served, we review legal, ethical, and moral issues surrounding the processes of obtaining informed consent and offer specific recommendations for protecting people with disabilities.

A model of health environmental integration.

The spheres of health environmental integration (HEI) combine contemporary models of disease and disability and expand them with historic theories of the mind/body relationship. The basic premise is that neither the person nor his or her neurological sequelae can be characterized fully without viewing the environment as a dynamic system of which he or she and it are a part. Stroke rehabilitation based on such an integrative medical model could facilitate the health professional's understanding of how alternative treatments affect the patient's quality of life and experiences within environmental contexts.

Outcome indicators for stroke: application of an algorithm treatment across the continuum of postacute rehabilitation services.

OBJECTIVE: To determine the feasibility and utility of applying a case-mix adjusted algorithm for treatment across the continuum of stroke rehabilitation. DESIGN: Implementation of a clinical algorithm developed through national expert panels to standardize rehabilitation assessment and treatment of veterans with stroke. Stroke patients were stratified into initial severity groups using FIM instrument-Function Related Groups (FIM-FRG) classifications and were followed up from first rehabilitation referral to completion of all active restorative functional goals. FIM-FRG assignments were used to establish case-mix adjusted outcome indicators for the continuum of rehabilitation services. SETTING: Rehabilitation services in medical and surgical units, intermediate care units, inpatient rehabilitation bed units, and outpatient settings in 10 participating Veterans Affairs (VA) medical centers. PATIENTS: Stroke patients (n = 421) who received rehabilitation in the 10 participating VA centers. MAIN OUTCOME MEASURES: Patients' functional gains, length of treatment (LOT), functional status at discharge, LOT efficiency, costs, cost efficiency, and disposition location. RESULTS: Two hundred twenty-three patients began rehabilitation while in acute medical or surgical units, 171 in inpatient rehabilitation units, 24 in intermediate care, and the remainder while in other settings. With cases compiled across all settings, average total rehabilitation costs for patients in the lowest FRG class (most severe disabilities) were more than twice those for patients assigned to the highest FRG class (least severe disabilities). FIM gains were greatest in the subset of younger stroke patients with the most severe disabilities. CONCLUSIONS: Implementing a standard algorithm of rehabilitation care that includes outcome indicators adjusted to patients' disability severity is feasible. The algorithm's utility is evident because it encompasses rehabilitation care provided across the full continuum, promotes access to care by advocating assessment of all stroke patients, encourages early initiation of treatment, and promotes a smooth transition though various levels of care while encouraging cost containment.

A functional diagnostic complexity index for rehabilitation medicine: measuring the influence of many diagnoses on functional independence and resource use.

OBJECTIVE: To develop an index that weights diagnostic information (International Classification of Diseases, 9th revision, Clinical Modification, or ICD-9-CM codes) by the extent to which it is expected to affect functional status and inpatient rehabilitation length of stay (LOS). DESIGN: Eleven nationally prominent physiatrists assigned ICD-9-CM codes to ordinal categories by expected effect on functional recovery. A resulting functional diagnostic complexity index score was calculated for each patient by combining the ranked values of each ICD-9-CM code in the discharge record. Analyses were stratified across the 20 rehabilitation impairment categories (RICs) of the Functional Independence Measure-Function Related Groups. DATA: Patients (182,254) discharged from 465 inpatient rehabilitation units in larger hospitals and free-standing rehabilitation hospitals in 1995. RESULTS: High degrees of diagnostic complexity were associated with low levels of functional independence at admission within each of 20 RICs (Spearman R = .06 to .25). Depending on RIC, patients in the highest (compared with the lowest) complexity category had up to a 35% increase in rehabilitation LOS after accounting for the primary medical reason for rehabilitation and severity of disabilities at admission. CONCLUSION: This prototype index of medical complexity offers a promising approach for analyzing the cumulative effects of diagnoses on patients' initial functional status and rehabilitation LOS.

A functional strategy for classifying patients after traumatic spinal cord injury.

OBJECTIVES: To present a function-based strategy for classifying patients by expected functional outcomes measured as patients' performances at discharge on each of the 18 component items of the FIMtrade mark instrument (previously known as the Functional Independence Measure). METHODS: Data included records from 3604 inpatients with traumatic spinal cord injury discharged from 358 rehabilitation units or hospitals in 1995. The function-based strategy assigned patients to four Discharge Motor-FIM-Function Related Groups defined by patients' admission performance on the motor-FIM items. RESULTS: The majority of patients whose motor-FIM scores at admission were above 30 were able to groom, dress the upper body, manage bladder function, use a wheelchair, and transfer from bed to chair, either independently or with supervision, by the time of discharge from inpatient rehabilitation. Most patients whose scores were above 52 attained independence in all but the most difficult FIM tasks, such as bathing, tub transfers, and stair climbing. CONCLUSIONS: This classification scheme can be used to determine the degree to which patients' actual FIM outcomes compare to other individuals who had similar levels of disabilities at the time of admission to rehabilitation. The clinician can apply these 'FIM item attainment benchmarks' retrospectively in quality improvement, in guideline development, and in anticipating the types of post-discharge care required by clinically similar groups.

Research on physical activity and health among people with disabilities: a consensus statement.

Research is required to advance the understanding of issues related to the effect of physical activity on health and disease prevention among people with disabilities. This report is the result of a consensus process using selected experts in health and exercise. The purpose of the consensus conference was to identify research priorities for physical activity and health among people with disabilities. Priorities were established by 30 participants, who were selected by the principal investigators to achieve balance in the areas of engineering, epidemiology, medicine, nutrition, exercise physiology, and psychology. Experts summarized relevant data from their research and from comprehensive review of the scientific literature on the topic areas chosen for the conference. Public commentary was provided by participants in the 1996 Paralympic Congress. Panel members discussed openly all material presented to them in executive session. Commentary from open discussion periods were recorded and transcribed. Selected panelists prepared first drafts of the consensus statements for each research priority question. All of these drafts were distributed to the panelists and pertinent experts. The documents were edited by the drafting committee to obtain consensus. This research priority setting process revealed that greater emphasis must be placed on determining the risks and benefits of exercise among people with disabilities. Exercise must be studied from the perspective of disease prevention while mitigating risk for injury. Five areas were identified as focal points for future work: epidemiological studies; effects of nutrition on health and ability to exercise; cardiovascular and pulmonary health; children with disabilities; and accessibility and safety of exercise programs. As people with disabilities live longer, the need for addressing long-term health issues and risk for secondary disability must receive greater attention. As a consequence of the consensus process, specific recommendations for future research regarding the impact of exercise on the health and quality of life of persons with disabilities were defined.

The Capabilities of Upper Extremity instrument: reliability and validity of a measure of functional limitation in tetraplegia.

OBJECTIVE: To evaluate the reliability and validity of the Capabilities of Upper Extremity (CUE) instrument, designed to measure upper extremity functional limitations in individuals with tetraplegia. Functional limitations are actions such as reaching or grasping and are a link between the domains of impairment and disability. DESIGN: Survey of people with chronic spinal cord injury. SETTING: Regional spinal cord injury center. SUBJECTS: One hundred fifty-four individuals (140 male) with tetraplegia at least 1 year after injury and followed by the center. Mean age was 36.7 years (SD=11.1). Sixty-eight percent were motor complete. METHODS: The 32-item CUE was administered by telephone interview twice about 2 weeks apart. The motor portion of the Functional Independence Measure (FIM) was collected during the first interview. Upper extremity motor scores and motor levels were obtained from the most recent assessment in the outpatient chart. The instrument was evaluated for internal consistency, reliability, and validity. Exploratory factor analysis was performed to examine scale structure. RESULTS: Homogeneity of the scale was excellent. Cronbach's alpha was .96, and item-total correlations ranged from .49 to .78. Test-retest reliability was high (ICC=.94). All but three items had desired levels of agreement (K > .60). Analysis of variance indicated that the CUE distinguished between motor levels of tetraplegia more than one level apart. The CUE was correlated highly with both motor scores and FIM. Regression analysis indicated that the CUE was better than upper extremity motor scores for predicting FIM scores. The model containing the CUE explained 73% of the variance in FIM and was not enhanced by the addition of motor scores. Factor analysis suggested four potential subscales: arm function (bilateral), right hand function, left hand function, and reaching down. CONCLUSION: The CUE exhibits good homogeneity, reliability, and validity; further work is needed to determine its sensitivity to change in function.

Comparing consumer and clinician values for alternative functional states: application of a new feature trade-off consensus building tool.

OBJECTIVE: To present the Features-Resource Trade-Off Game (Features Game) as a new method for comparing preferences for alternative outcomes among different groups of people. DESIGN: The Features Game is illustrated by comparing preferences for recovery among the 18 functional status items making up the Functional Independence Measure. Methods involved trading levels of independence (resources) across the different items (features). SETTING: Ten community-dwelling consumers with physical disabilities and 10 rehabilitation clinicians participated in four separate expert panels-two in Houston and two in Philadelphia. MAIN OUTCOME MEASURES: Five sets of hierarchical stages defined by the four separate panels specifying the profiles of function believed to most foster independent living. RESULTS: Cognitive and communication skills were selected preferentially over the recovery of physical tasks by all panels, but, in comparison to clinicians, consumers were more willing to accept mild deficits in cognitive skills as trade for realizing earlier recovery of physical abilities. CONCLUSION: The overwhelming choice of cognitive and communication abilities over physical abilities suggests a need to enhance therapeutic efforts in those areas. More subtle differences in consumer and clinician preferences emphasize the importance of establishing consumer-oriented goals.