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.

Exploring the impact of traumatic brain injury on the older couple: 'yes, but how much of it is age, I can't tell you ...'.

PRIMARY OBJECTIVE: To qualitatively explore the partner relationships of older couples faced with traumatic brain injury (TBI). RESEARCH DESIGN: Qualitative analysis comparing individuals with TBI and a comparison group. METHODS AND PROCEDURES: Twenty-one individuals were interviewed using a semi-structured format focusing on various aspects of their partner relationship. A qualitative analysis of transcripts identified general themes. MAIN OUTCOMES AND RESULTS: Variability of relationship experiences (relationship relatedness and persistence of the partnership) was shown across groups. Aspects of relationship commitment to the partnership were revealed. Many individuals with TBI and their partners attributed various relationship changes to ageing and age-related issues and not to the TBI. CONCLUSIONS: These findings suggest that the effects of TBI are not clearly distinguished from age-related causes for change in the partners and their relationship. Older couples' experiences may be different from those of younger couples impacted by TBI, in the areas of sexuality, inter-personal support and role functions.

Searching the literature for information on traumatic spinal cord injury: the usefulness of abstracts.

STUDY DESIGN: Systematic review of abstracts of published papers presumed to contain information on chronic pain in persons with spinal cord injury (SCI). OBJECTIVES: To determine to what degree papers on SCI are abstracted in such a way that they can be retrieved, and evaluated as to the paper's applicability to a reader's questions. SETTING: US--academic department of rehabilitation medicine. METHODS: 868 abstracts published in Medline were independently examined by two out of 13 screeners, who answered four questions on the subjects and nature of the paper with 'Yes', 'No' or 'insufficient information'. Frequency of ratings 'insufficient information', and screener agreement were evaluated as affected by screener and abstract/paper characteristics. RESULTS: Screeners could not determine whether the paper dealt with persons with traumatic SCI for 37% of abstracts; whether chronic pain was a topic could not be determined in 18%. Physicians were less willing than other disciplines to assign 'insufficient information'. Screener agreement was better than chance, but not at the level suggested for quality measurement. Screener discipline and task experience did not make a difference, nor did abstract length, structure, or decade of publication of the paper. CONCLUSION: Authors need to improve the quality of abstracts to make retrieval and screening of relevant papers more effective and efficient. SPONSORSHIP: National Institute on Disability and Rehabilitation Research.

Reporting on reliability and validity of outcome measures in medical rehabilitation research.

PURPOSE: To evaluate the degree to which published medical rehabilitation research offers evidence of reliability, validity and other clinimetric qualities of the data reported. METHOD: Descriptive study of published intervention research papers published in six US medical rehabilitation journals in 1997 and 1998. Selected characteristics of the papers and the outcome measures used were abstracted by one or two raters. RESULTS: The 171 papers identified included 651 outcome measures. Some type of data reliability information was provided for 20.1% of these measures; for validity, this was 6.9%. However, this information was based on data collected for the sample studied for only 7.7% (reliability) and 0.6% (validity). CONCLUSIONS: Most rehabilitation research falls short of standards, including the Standards promulgated by an American Congress of Rehabilitation Medicine Advisory Group. Authors, peer reviewers and editors need to change their practices to improve this situation.

A tale of two countries: environmental impacts on social participation after spinal cord injury.

STUDY DESIGN: Comparative analysis of survey data produced in two countries. OBJECTIVES: To assess the degree to which environmental barriers impact social participation, and to identify the aspects of participation most affected. SETTING: Community-dwelling individuals with spinal cord injury in the USA and Turkey. METHODS: Subjects completed the Functional Independence Measure (FIM) motor score, the Craig Hospital Inventory of Environmental Factors (CHIEF), and the Craig Handicap Assessment and Reporting Technique (CHART). Analysis of co-variance was used to analyze CHIEF and CHART differences within and between country. RESULTS: US subjects reported higher participation scores (CHART) and lower barriers (CHIEF), however, when controls for age, gender, time since injury and motor ability (FIM) were applied, country differences in reports of barriers were limited. Motor ability was the major predictor of participation, which was minimally affected by barriers. CONCLUSION: Conceptualization and measurement issues may have been the reason for the minimal support for the hypothesis that environment affects participation. Suggestions for future research are made. SPONSORSHIP: National Institute on Disability and Rehabilitation Research, Centers for Disease Control and Prevention.

Self-care independence after spinal cord injury: patient and therapist expectations and real life performance.

PURPOSE: To evaluate changes in self-care performance between rehabilitation discharge and 1 year follow-up and to compare patients' and therapists' expectations of self-care independence with actual self-care performance after discharge. METHODS: Prospective study of 55 patients with tetraplegia (21 complete and 34 incomplete) after spinal cord injury (SCI) consecutively admitted to a large urban rehabilitation hospital [injury levels: C4 (5), C5 (33), C6 (9), C7 (4), and C8 (4)]. Data were collected using structured patient interviews, occupational therapists' predictions of patients' self care, and Functional Independence Measure ratings by rehabilitation staff. RESULTS: Analysis showed that for all skills, expectations of patients (mainly African American men) were higher than therapists' predictions, and for 3 of these skills, the differences were statistically significant: eating (Z = -4.47, P < .001 ); bathing (Z = -3.67, P < .001 ); and dressing (Z = -3.16, P = .002). Occupational therapists were better predictors of patients' actual self-care performance at discharge than were patients, although both tended to overestimate patients' performance. There was no evidence that self-care capability declined between discharge and 12 months follow-up, but routine self-care performance varied widely across patient and personal circumstances. CONCLUSIONS: Differential attrition reduced the study sample to 25 SCI patients who were primarily more severely injured African American men. Results showed that these patients maintained their self-care performance 1 year after discharge, but more innovative strategies must be developed to customize self-care retraining to address the unique needs of this patient population.

Measures of social outcomes in disability research.

OBJECTIVES: To describe instruments that have been developed to quantify (aspects of) social outcomes in research on persons with a disability, and to evaluate the clinimetric characteristics of some of the more prominent and promising measures. DATA SOURCES: Literature in social health, social psychiatry, developmental disabilities, independent living, gerontology, medical rehabilitation, and quality of life studies. STUDY SELECTION: Social outcomes are defined as those changes or differences in the social functioning (broadly defined) of persons with disabilities that result directly or indirectly from impairments and functional limitations. Excluded were measures that focus on purely physical or psychologic aspects of functioning, apply to children only, or quantify 1 social domain only. DATA EXTRACTION: For 16 instruments the distribution of items across the participation domains of the International Classification of Impairments, Activities, and Participation is presented, as well as a distribution of items by metrics used. For 5, clinimetric information from published studies were reviewed and summarized in letter grades. DATA SYNTHESIS: Several instruments have broad coverage, acceptable respondent burden, and moderate to good reliability, validity, and sensitivity. CONCLUSIONS: Social outcomes should be more routinely included in disability and rehabilitation research. Recommendations for selection and further development are made.

Short versions of the telephone motor Functional Independence Measure for use with persons with spinal cord injury.

OBJECTIVE: To determine if the motor ability of persons with spinal cord injury (SCI) can be reliably estimated using a subset of the 13 Functional Independence Measure (FIM) items. STUDY DESIGN: FIM item subsets of 5, 6, or 7 items were selected using one of five strategies: random, coefficient alpha maximization, spread across the range of item difficulties, optimization by neurologic category, and individual optimization. Motor ability estimated by these 15 subsets was compared to the 13-item estimate, using intraclass correlation coefficient (ICC), Rasch calibration person reliability estimate, and other indices of reliability. SUBJECTS: Subjects were 4,128 persons with SCI, 1 to 25 years postinjury, interviewed for annual research follow-up using the FIM. RESULTS: All subsets had high ICC reliability (>.90). Subsets of 7 items performed generally better than those of 6 or 5 items. The best performance was provided by individual optimization subsets. The ICC for the 7-item set thus selected was .99. CONCLUSION: In annual follow-up, the number of FIM motor items can be reduced almost 50% while maintaining reliable estimates of subjects' motor ability. This approach may also be useful for other applications of interviewing to obtain FIM data, eg, for program evaluation.

Correlates of life satisfaction among persons with spinal cord injury.

OBJECTIVE: To analyze the correlates of life satisfaction for individuals with spinal cord injury (SCI). STUDY DESIGN: Survey; follow-up of subjects studied prospectively since onset of injury. PARTICIPANTS: A total of 2,183 persons with SCI, from 1 to 20 years postinjury, self-selected for annual research (and clinical) follow-up by one of 18 model systems of SCI care. RESULTS: Life satisfaction, as measured with the Satisfaction With Life Scale (SWLS), is associated with several demographic, social, functional, and clinical characteristics. Stepwise linear regression analysis resulted in a predictor model that included the following: sex (beta weight: .07; p < .001); number of rehospitalizations in the last year (-.05; p < .05); years since injury (.13; p < .0001); sociocognitive disability as measured with the Functional Independence Measure (.06; p < .01); and three handicap components, as measured with the modified Craig Handicap Assessment and Reporting Technique: mobility (.26; p < .0001); occupation (.10; p < .001); and social integration (.11; p < .0001). Impairment (level of injury) contributed indirectly, through its impact on motor disability. Racial/ethnic group membership, motor disability, and education contributed indirectly, through their effects on handicap. CONCLUSIONS: Life satisfaction after SCI can be reliably measured by means of the SWLS. Correlates of subjective well-being parallel those suggested by earlier studies and those for the population at large. The effects of life satisfaction on social participation, health, and other aspects of life need further study.

A population-based survey of in-line skaters' injuries and skating practices.

OBJECTIVE: To describe in-line skating interests and practices, protective gear usage, and injury patterns in a population-based group of in-line skaters. DESIGN: A two-page questionnaire with multiple choice questions and one write-in response question. PARTICIPANTS: The survey was sent to 1,000 members of an in-line skating club in Detroit, MI and 45 other states. MAIN OUTCOME MEASURES: The study was designed to profile skater injury patterns. The effects of protective gear and skater lessons on injury were examined. RESULTS: Of the 435 skaters returning questionnaires, 56.7% were men. The mean age was 35 years. The frequency of in-line skating lessons was 31.7%. Of respondents, 72.5% wear some kind of protective gear while skating, and 79.8% reported that they had been injured while skating. Of those who had skated for 5 or more years, 93.7% had been injured. Upper extremity injuries were reported by 58.8% of skaters and lower extremity injuries by 66.7%. The majority suffered abrasions and bruises only. More serious injuries were reported by very few skaters: fractures by 5.5% and concussions by 2.1%. Only 3% of respondents required orthopedic surgery. CONCLUSION: Lessons and protective gear decrease the risk of injury. However, risk of incurring minor injury exists even if full protective gear is used. Those who have skated for more than 5 years are almost certain to report having been injured.

Patient and staff acceptance of robotic technology in occupational therapy: a pilot study.

While the majority of applications of robotics in the field of rehabilitation focus on the development of smart aids for people without upper extremity function, there is also potential for the robot as a therapy "aide." We designed, built, and pilot-tested hardware and software that used a robot to provide muscle reeducation movement patterns after stroke. This is a report on a field trial, in which 11 occupational therapists used the system with 22 patients; each patient averaged 2.2 sessions. Based on information contained in the system database, a log, patient interviews, and therapist questionnaires, we evaluated safety, system utility, and patient and therapist acceptance. The results suggest that robotic treatment is safe and accepted (if not welcomed) by patients. The therapists expressed a qualified acceptance, suggesting several modifications to increase utility. The potential for the application of robotics in rehabilitation therapy is discussed in light of these findings.

Depressed mood in spinal cord injured patients: staff perceptions and patient realities.

This study examined the correspondence between staff ratings and patient ratings of depressed mood for 102 newly spinal cord injured persons admitted to two regional spinal cord injury rehabilitation centers. Patients rated their mood by using the Depression Adjective Check List (DACL). Treatment staff also rated each patient by completing the DACL as they thought the patient would have on the same day. Ratings were made every three weeks during a patient's stay. Results indicate that patients were generally similar to the general population in terms of self-rated depressed mood. Staff members typically overestimated levels of patients' depressed moods. Staff members' ratings did correlate significantly, although modestly, with patients' self-ratings (r = .34, p less than .001). However, staff's accuracy in estimating patient mood did not increase as a function of increased exposure to the patient or years of experience in rehabilitation.

Medical school effect on student selection of physical medicine and rehabilitation as a specialty.

Of the several roads that lead to practice in the specialty of physical medicine and rehabilitation (PM&R), the most common is from a US medical school to a PM&R residency to specialty practice. To reduce the predicted shortage of PM&R physicians, more medical students must be attracted to the specialty. Past studies have failed to show success of various mechanisms, designed to expose students to the field, to attract to the residency programs. The current study was designed to further explore the medical school factors contributing to choice of the PM&R residency. The number of PM&R residents produced by each of the US medical schools was related to various characteristics of these schools: size, presence of a PM&R department, presence of a PM&R residency program. Only school size was found to explain the sizable observed variation in number of residents. Additional research incorporating quality and quantity of curricular exposure to PM&R is suggested.