Development of the International Spinal Cord Injury Activities and Participation Basic Data Set.

STUDY DESIGN: Consensus decision-making process. OBJECTIVES: The objective of this study was to develop an International Spinal Cord Injury (SCI) Activities and Participation (A&P) Basic Data Set. SETTING: International working group. METHODS: A committee of experts was established to select and define A&P data elements to be included in this data set. A draft data set was developed and posted on the International Spinal Cord Society (ISCoS) and American Spinal Injury Association websites and was also disseminated among appropriate organizations for review. Suggested revisions were considered, and a final version of the A&P Data Set was completed. RESULTS: Consensus was reached to define A&P and to incorporate both performance and satisfaction ratings. Items that were considered core to each A&P domain were selected from two existing questionnaires. Four items measuring activities were selected from the Spinal Cord Independence Measure III to provide basic data on task execution in activities of daily living. Eight items were selected from the Craig Handicap Assessment and Reporting Technique to provide basic data on the frequency of participation. An additional rating of satisfaction on a three-point scale for each item completes the total of 24 A&P variables. CONCLUSION: Collection of the International SCI A&P Basic Data Set variables in all future research on SCI outcomes is advised to facilitate comparison of results across published studies from around the world. Additional standardised instruments to assess activities of daily living or participation can be administered, depending on the purpose of a particular study.

Screening for neuropathic pain after spinal cord injury with the spinal cord injury pain instrument (SCIPI): a preliminary validation study.

STUDY DESIGN: Cross-sectional. OBJECTIVE: To preliminarily evaluate the validity of an interview-based spinal cord injury (SCI) neuropathic pain screening instrument. SETTING: Six university-based SCI centers in the United States. METHODS: Clinician diagnoses of neuropathic pain (NP) and non-neuropathic pain subtypes were collected independently of descriptions of the pain characteristics provided by the persons with SCI by using the Spinal Cord Injury Pain Instrument (SCIPI); SCIPI information and physician diagnoses for 82 pain sites of which they were most confident were subsequently compared. RESULTS: Four of the SCIPI items correlated significantly with the NP subtype as determined by the clinician. The best cutoff score for identifying NP was an endorsement of two or more of these four items. Using this cutoff, sensitivity of the SCIPI was 78%, specificity was 73% and overall diagnostic accuracy was 76%. CONCLUSION: In this preliminary study, the SCIPI, which can be administered by a nonclinician, appears to have good sensitivity, specificity and diagnostic accuracy in a SCI population; it may have a role as a screening tool for NP after SCI. Further study is needed.

Quality of life for women with physical disabilities.

This article emphasizes the role of several factors on the QOL of women with disabilities. Future studies might examine ways to merge these factors to examine their long-term consequences in the lives of women with disabilities and, hence, society at large. Findings should provide a basis for policymaking and clinical rehabilitation interventions designed to promote greater QOL for women with disabilities-a QOL that offers vigorous prosperity, flourishing health, and full social participation.

Outcome Measures in Quality of Life.

The concept of quality of life (QOL) represents a new paradigm in rehabilitation research and cSinical care. Three measurement approaches have been used to investigate QOL of individuals: (1) evaluative or subjective, (2) objective, and (3) quality adjusted life year (QALY). QALYs represent the utility approach to measurement with emphasis on value of, desirability of, or preference for conditions or status. When the condition in question isdefined as health, health-related quality of life (HQOL) measures are employed. Very few studies are found in the literature addressing QOL of stroke patients. Among studies reviewed, HQOL measures are often used. A summary of these studies and discussion of limitations associated with QOL measures utilized are provided.

Workers' disability and return to work.

A severe injury on the job often results in a medical recovery period requiring either a temporary or long-term absence from work. Rehabilitation interventions emphasizing return to work may facilitate recovery and prevent workers from becoming unemployed. A review of the current literature suggests a direct relationship between workers' demographic and disability-related characteristics, early referral to rehabilitation and successful return to work. This article describes findings from a research study designed to investigate factors associated with the return to work of injured workers. Data from 200 workers' compensation cases from a large automobile manufacturing employer in the state of Michigan were analyzed in terms of workers' demographics and other characteristics including type and severity of injury, cause of injury, type of medical intervention received, disability status, worker's job experience and wages before injury; disability costs to employer; the provision of vocational rehabilitation services; and return-to-work outcomes. Variables found to be significantly related to return to work outcomes included workers' age, education, wages before injury, job seniority and severity of the injury. Workers who successfully returned to work had higher seniority in their jobs, more education and were paid higher wages. Workers whose injuries were more severe and longer lasting, were less likely to return to work. Back impairments appeared to be a particular risk factor for return to work regardless of vocational rehabilitation intervention.

Alcohol use among spinal cord-injured patients.

Patients with spinal cord injury (SCI) are at greater risk than others for alcohol abuse because they face physical, psychological and vocational difficulties that include sensory impairment, pain, depression and reduced opportunities to participate actively in society. This study assesses the utility of using a brief screening interview questionnaire, the CAGE (cut, annoyed, guilty and eye opener), to further evaluate patients with SCI for alcohol use, including alcoholism using retrospective data. The study explores patterns of alcohol consumption among SCI patients and investigates the relationship between self-reported alcohol use, age, previous history of drug and alcohol abuse and medical complications after discharge. Results suggest that the CAGE is a valid measure to be used with SCI patients. Age did not correlate significantly with patient's CAGE scores. However, SCI subjects with higher mean CAGE scores also had a higher incidence of medical complications. CAGE scores were significantly correlated with previous history of alcohol and drug abuse and with the average weekly number of drinks reportedly consumed before injury.

Insurance benefits coverage for persons with spinal cord injuries: determining differences across payors.

This investigation represents a preliminary step in determining differences in benefits coverage among three types of rehabilitation insurance payors (Catastrophic payors, which include Automobile No-Fault and Workers' Disability Compensation; Medicaid; and Third-party private payors). Subjects in this study were 122 spinal cord injury (SCI) outpatients who received their initial rehabilitation at the University of Michigan Medical Center and at the Rehabilitation Institute of Michigan. Insurance benefits received by them were examined across the following areas: accessible housing, transportation, personal attendant care services, professional outpatient services and adapted equipment. Results indicated differences across the three payors, with catastrophically-sponsored SCI outpatients receiving more benefits than SCI outpatients sponsored by public Medicaid or by private third-party insurance. Implications and recommendations for further studies are briefly discussed.

Predictors of psychologic distress one year after spinal cord injury.

This study investigated predictors of psychologic distress at 1 year after injury. The brief symptom inventory, a symptom checklist that provides an overall index of distress, was administered to 119 spinal cord-injured patients. All patients had diagnoses of recent, traumatic SCI and had been admitted for initial inpatient rehabilitation between 1985 and 1990. Results showed levels of psychologic distress to be significantly higher 1 year after injury when compared with results obtained on admission and at discharge from the inpatient rehabilitation program. The prevalence rate for elevated distress after injury was 28%. Significant predictors of psychologic distress 1 year after injury included level of distress at admission, neurologic completeness of SCI, type of rehabilitation insurance payor (catastrophic v noncatastrophic), occupational status before SCI and participation status in an inpatient independent living program. A multiple regression model with nine independent variables was specified that explained 63% of the variance in psychologic distress measured after injury.

International efforts in independent living.

Several nations currently share a major concern for provision of services to severely disabled persons. The focus of this concern has been upon those services which promote maximum integration and independence of severely disabled individuals in the community. Recent efforts in this direction by governments, private citizens, and handicapped-consumer organizations in Sweden, The Netherlands, Denmark, England, Canada, and Australia are discussed. Developments in housing and environmental modification, transportation, and self-help training are reviewed for their potential interest to advocates and practitioners of rehabilitation for independent living.

Determining differences in post discharge outcomes among catastrophically and noncatastrophically sponsored outpatients with spinal cord injury.

This study tested differences in functional independence status, level of psychologic distress and extent of handicap experienced after discharge from inpatient rehabilitation among a group of 125 outpatients with spinal cord injury (SCI) sponsored by one of three types of rehabilitation insurance payors: catastrophic (Michigan Automobile No-Fault and Workers' Disability Compensation), Medicaid and third-party privates. Outcome measures included the functional independence measure, the brief symptom inventory and the Craig handicap assessment reporting technique. Insurance data was obtained via medical chart reviews and interviews that were conducted either face-to-face or by telephone, using the benefits coverage inventory. No differences in terms of post discharge functional independence across subjects sponsored by the three payors was found when controlling for neurologic status. However, SCI subjects sponsored by different payors reported receiving different amounts of benefits. Subjects also differed on the extent of psychologic distress experienced after discharge and the extent of their handicaps. SCI subjects sponsored by Medicaid reported receiving fewer benefits, being more distressed and experiencing greater handicap in comparison to others. Third-party privately sponsored subjects, conversely, experienced less handicap and distress than did the study's other subjects.

Moderator-variable effect on the Brief Symptom Inventory test-item endorsements of spinal cord injury patients.

This study shows that results from the Brief Symptom Inventory (BSI), an instrument used in several US rehabilitation centers to assess psychological distress among patients, are significantly confounded by the somatic characteristics of physically disabled patients with a specific diagnosis: spinal cord injury. Our findings also illustrate the nature and the effect of this moderator variable of physical condition on BSI item endorsement and suggest a method for controlling the moderator's variable effect. The BSI item responses of 288 persons with spinal cord injury (SCI) were compared to a non-patient normative sample of 719 persons. Thirty-six items reliably differentiated the two groups (p < 0.001) and seven of these items were judged to be physical sequelae of SCI. Other highly endorsed items describe a frequent pattern of psychological response to SCI. This response pattern does not appear to reflect the latent variables which are claimed to underlie test items. Expected endorsement of these items by patients with SCI can lead to errors in test interpretation by rehabilitation professionals.

Prevalence and associated features of depression and psychological distress in polio survivors.

This cross-sectional study examines the prevalence of psychological distress and depression among 116 polio survivors. It investigates demographic, medical, and coping differences between subjects with (n = 17) and without (n = 99) these symptoms. Subjects were administered the Brief Symptom Inventory (BSI), the Coping with Disability Inventory (CDI), and a questionnaire about their polio histories. The BSI provided measures of psychological distress and depression that defined the subgroups. The CDI assessed coping behaviors. BSI scores for the overall sample were within the normal range indicating no major distress, depression, nor elevated somatic complaints. Several significant differences were found between the two subgroups. On average, depressed/distressed subjects reported an increase in pain (p < .01) and further deterioration of their medical status since the time of their physical best subsequent to the onset of polio (p < .01). They consistently rated their health as poorer than did nondepressed/nondistressed subjects (p < .001). They also reported less satisfaction with life and their occupational status (p < .001) and displayed poorer coping behaviors combined (p < .001). Selected variables such as life satisfaction, pain, decrease in activity, and current living situation accounted for 51% of the variance when predicting distress and depression among this group of polio survivors.

Randomized clinical trials in medical rehabilitation research.

The purpose of this article is to provide researchers and clinicians with a basic understanding of randomized clinical trials and to discuss their potential application to and limitations in the field of physical medicine and rehabilitation. A brief history of the development of randomized clinical trials, definitions of clinical trials, types of trials, and overview of methodological issues related to design are offered. Information is provided about the need to establish clear and concise study objectives and to explicitly define interventions and expected outcomes. Recommendations for developing clinical protocols and determining adequate sample size are presented, and various statistical considerations, including power, are discussed. Issues related to sampling strategies, and recruitment are reviewed. Importance of randomization and blinding is emphasized. Readers are also referred to other resources available on this topic. Finally, the authors describe shortfalls associated with the use of this design in rehabilitation research. These are further explored and discussed in terms of the actual benefits and limitations of randomized clinical trials in physical medicine and rehabilitation research. Recommendations are made regarding the use of this methodology to address relevant needs in clinical practice.

Types of spiritual well-being among persons with chronic illness: their relation to various forms of quality of life.

OBJECTIVES: Derive a spiritual well-being classification and thereby enhance understanding of the relation between spiritual well-being, quality of life (QOL), and health among persons with chronic illness or disability. DESIGN: Cluster analyses were performed to develop a spiritual well-being classification. Analysis of variance was used to compare cluster groups on various dimensions of QOL. SETTING: Part of a larger QOL study conducted at a midwestern medical center. PATIENTS: A convenience sample of 216 inpatients: amputation (n = 74), postpolio (n = 37), spinal cord injury (n = 34), breast cancer (n = 36), and prostate cancer (n = 35). Minors were excluded from the study. MAIN OUTCOME MEASURES: Spiritual Well-Being Scale (SWBS), Functional Assessment of Cancer Therapy (FACT), Functional Living Index-Cancer (FLIC), Sickness Impact Profile (SIP), Medical Outcome Survey-Short Form (SF-36), and the Satisfaction With Life Scale (SWLS). RESULTS: Three types of spiritual well-being were identified: religious (n = 146), existential (n = 37), and nonspiritual (n = 30). Significant cluster differences (p < .03 to p < .001) were observed across all QOL domains and life satisfaction. Compared with the other cluster groups, the nonspiritual group reported significantly lower levels of QOL and life satisfaction and the highest proportion of health status change with respect to both improvement and decline in health. CONCLUSIONS: Three types of spiritual well-being were empirically identified in this sample. Subtypes differed significantly with respect to various aspects of QOL. Further research is needed to validate this classification and to determine if type of spiritual well-being has a causal effect on treatment outcome or on the recovery process.

The effects of insurance benefits coverage on functional and psychosocial outcomes after spinal cord injury.

This retrospective study examined the effects of type of payor (ie, catastrophic, Medicaid, and private) and extent of benefits and independent living (IL) resources received on functional and psychosocial outcomes after spinal cord injury (SCI). One hundred seventy SCI persons with dates of injury from 1985 to 1990 and who were on average 4 years after their initial discharge from rehabilitation participated in the study. Benefits and resources received from discharge to 2 years post-injury in housing, transportation, personal care assistance (PCA), and equipment were assessed. Outcome variables included measures of psychological distress, self-esteem, and participation in physical and work/school activities. Extent of benefits received after SCI was found to be both a function of source of payor and of subject's neurological classification. While an effect of total benefits received could not be detected on SCI subjects post-discharge physical activity, and benefits paid by self only were associated with physical activity. Transportation benefits received and type of payor were positively associated with work/school outcomes. Younger subjects, sponsored by private payors, and with incomplete injuries were more likely to be working or going to school after SCI. Benefits and payor were also associated with psychological distress. Privately sponsored subjects were less distressed, whereas those sponsored by Medicaid were most distressed. Extent of benefits received was found to be inversely associated with distress and self-esteem. Persons with lower self-esteem received more postdischarge benefits, whereas those who paid for their own benefits and those who received communication equipment benefits paid by insurance, reported higher self-esteem. Implications for possible policy changes based on these results are discussed.

Quality of life issues among women with physical disabilities or breast cancer.

OBJECTIVE: The purpose of this study was to assess quality of life (QOL) and life satisfaction among women with physical disabilities or breast cancer, and to identify factors predictive of QOL and life satisfaction for women and men. QOL and life satisfaction differences were examined between women and men with physical disabilities and cancer, and between women with traumatic and chronic physical conditions. DESIGN: A cross-sectional design employing several QOL and life satisfaction measures was used. SAMPLE: Two hundred sixteen outpatient subjects (99 women, 117 men) with physical disabilities or cancer were studied. INSTRUMENTS: The Health Status Questionnaire-Short-Form 36 (SF-36), Functional Assessment of Cancer Therapy (FACT), Functional Living Index-Cancer (FLIC), and the Satisfaction With Life Scale (SWLS). RESULTS: Women with traumatic conditions (amputation, spinal cord injury) reported poorer physical functioning and well-being, whereas women in the chronic (postpolio, breast cancer) group reported poorer health status. No significant gender differences were found with respect to QOL or life satisfaction. Whereas functional and emotional well-being were the strongest predictors of overall QOL for both men and women, self-perceived general health significantly predicted QOL for women (p < .05) and social well-being significantly predicted QOL for men (p < .01). Among men, life satisfaction was best predicted by marital status (p < .05), general health (p < .05), and social well-being (p < .01). The resulting QOL models had adjusted R2 values of .77 and .76 for women and men, respectively. Among women with traumatic conditions, functional well-being best predicted QOL (p < .01). Life satisfaction for women with chronic conditions was best predicted by age, education, and spiritual well-being. CONCLUSION: QOL as measured by the impact of illness on an individual is best predicted by physical and functional well-being. Satisfaction with one's life was best predicted by functional ability. Although functional and physical ability were the best predictors for both QOL and life satisfaction, social functioning made significant and substantive contributions to these constructs. Spinal cord injury had the most impact on physical functioning, whereas prostate cancer had the least. Psychosocial functioning was most affected by amputation and least affected by prostate cancer.

Azathioprine and cyclosporin: different tissue matching criteria needed?

Of 275 renal transplants performed over seven years in a single unit, azathioprine was the main immunosuppressive agent in 128 and cyclosporin in 147. With azathioprine graft survival was, as expected, negatively related to the number of HLA mismatches; with cyclosporin the reverse held true.