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.

The Walking Index for Spinal Cord Injury (WISCI/WISCI II): nature, metric properties, use and misuse.

STUDY DESIGN: Literature review. OBJECTIVE: To critically review all publications/internet sites that have described/used the Walking Index for Spinal Cord Injury (WISCI II), as a measure of impairment of walking function after spinal cord injury (SCI), in order to identify its psychometric properties, clarify its nature, specify misuse and incorporate the findings in an updated guide. METHOD: A systematic literature search was done of Ovid MEDLINE, CINAHL, PsychINFO, Cochrane Central Register of Controlled Trials, Scopus and electronic sites using key words: WISCI or WISCI II, SCI, paraplegia/ tetraplegia/ quadriplegia and ambulation/gait/walking. Among 1235 citations retrieved, 154 relevant articles/sites were identified, classified and examined by the authors; recommendations were made based on findings. RESULTS AND DISCUSSION: The validity (face/concurrent/content/construct/convergent/criterion) and reliability of the WISCI II has been documented in clinical trials and clinical series, and considered adequate by systematic reviewers. In chronic SCI subjects, reliable determination of the maximum (as opposed to self-selected) WISCI II level requires more time and experience by the assessor. The correct use of WISCI II is clarified for testing acute/chronic phases of recovery after SCI, age of subjects, devices and settings. The WISCI II and walking speed measures may be performed simultaneously. CONCLUSION: The increased use of the WISCI II is attributed to its unique characteristics as a capacity measure of walking function and its strong metric properties. Appropriate use of the WISCI II was clarified and incorporated into a new guide for its use. Combining it with a walking speed measure needs further study.

International Spinal Cord Injury Quality of Life Basic Data Set.

STUDY DESIGN: Survey of expert opinion, feedback, and development of final consensus. OBJECTIVE: Present the background, purpose, development process and results for the International Spinal Cord Injury (SCI) Quality of Life (QoL) Basic Data Set. SETTING: International. METHODS: A committee of experts was established to select and define data elements to be included in an International SCI QoL Basic Data Set. A draft data set was developed and disseminated to appropriate organizations for comment. All suggested revisions were considered, and a final version of the QoL data set was completed. RESULTS: The QoL data set consists of 3 variables: ratings of satisfaction with general quality of life, satisfaction with physical health, and satisfaction with psychological health. All variables are rated on a scale ranging from 0 (completely dissatisfied) to 10 (completely satisfied). CONCLUSION: Collection of the International SCI QoL Basic Data Set variables should be a part of all future studies of SCI QoL to facilitate comparison of results across published studies from around the world. Additional standardized instruments to assess other aspects of QoL can be administered based on the purpose of a particular study.

International spinal cord injury pain classification: part I. Background and description. March 6-7, 2009.

STUDY DESIGN: Discussion of issues and development of consensus. OBJECTIVE: Present the background, purpose, development process, format and definitions of the International Spinal Cord Injury Pain (ISCIP) Classification. METHODS: An international group of spinal cord injury (SCI) and pain experts deliberated over 2 days, and then via e-mail communication developed a consensus classification of pain after SCI. The classification was reviewed by members of several professional organizations and their feedback was incorporated. The classification then underwent validation by an international group of clinicians with minimal exposure to the classification, using case study vignettes. Based upon the results of this study, further revisions were made to the ISCIP Classification. RESULTS: An overall structure and terminology has been developed and partially validated as a merger of and improvement on previously published SCI pain classifications, combined with basic definitions proposed by the International Association for the Study of Pain and pain characteristics described in published empiric studies of pain. The classification is designed to be comprehensive and to include pains that are directly related to the SCI pathology as well as pains that are common after SCI but are not necessarily mechanistically related to the SCI itself. CONCLUSIONS: The format and definitions presented should help experienced and non-experienced clinicians as well as clinical researchers classify pain after SCI.

International Spinal Cord Injury Pain (ISCIP) Classification: Part 2. Initial validation using vignettes.

STUDY DESIGN: International validation study using self-administered surveys. OBJECTIVES: To investigate the utility and reliability of the International Spinal Cord Injury Pain (ISCIP) Classification as used by clinicians. METHODS: Seventy-five clinical vignettes (case histories) were prepared by the members of the ISCIP Classification group and assigned to a category by consensus. Vignettes were incorporated into an Internet survey distributed to clinicians. Clinicians were asked, for each vignette, to decide on the number of pain components present and to classify each using the ISCIP Classification. RESULTS: The average respondent had 86% of the questions on the number of pain components correct. The overall correctness in determining whether pain was nociceptive was 79%, whereas the correctness in determining whether pain was neuropathic was 77%. Correctness in determining if pain was musculoskeletal was 84%, whereas for visceral pain, neuropathic at-level spinal cord injury (SCI) and below-level SCI pain it was 85%, 57% and 73%, respectively. Using strict criteria, the overall correctness in determining pain type was 68% (versus an expected 95%), but with maximally relaxed criteria, it increased to 85%. CONCLUSIONS: The reliability of use of the ISCIP Classification by clinicians (who received minimal training in its use) using a clinical vignette approach is moderate. Some subtypes of pain proved challenging to classify. The ISCIP should be tested for reliability by applying it to real persons with pain after SCI. Based on the results of this validation process, the instructions accompanying the ISCIP Classification for classifying subtypes of pain have been clarified.

Hip joint center location from palpable bony landmarks--a cadaver study.

An anatomical anthropometric study of adult human cadaveric pelves was performed to investigate the relationship between hip joint center (HJC) and selected aspects of pelvic geometry. Sixty-five pelves (35 female and 30 male) were examined. Measurements of pelvic geometry and HJC (center of bony acetabular rim) were taken from bony landmarks of de-fleshed pelves. Correlation analysis revealed that HJC cannot be accurately located as a function of pelvic width alone, but requires estimation as a function of pelvic height and depth as well. HJC was optimally located relative to the respective ASIS: 14% of pelvic width medial (mean error 0.58 cm), 34% of pelvic depth posterior (mean error 0.30 cm), and 79% of pelvic height inferior (mean error 0.35 cm). No significant differences were found between males and females in HJC estimation.

Depression and neuropsychological test performance in acute spinal cord injury patients: lack of correlation.

Factors which have been causally related to neuropsychological deficits in acute spinal cord injury (SCI) patients include advanced age, limited educational level, acute traumatic brain injury, alcohol and/or substance abuse. Concomitant depression may impair motivation, prolong reaction time, and produce fatigue during neuropsychological testing, resulting in impaired performance. To test the hypothesis that abnormal neuropsychologic test results may be associated with depression, the Zung Self-Rating Depression Scale (ZUNG) and a comprehensive, predominantly motor-free neuropsychological test battery were administered to 66 acute SCI patients approximately 8 weeks following injury. Spinal cord injury groups were dichotomized based on their ZUNG scores. Comparison of neuropsychological test scores between SCI groups failed to demonstrate any impairment in neuropsychological performance, within the limits of the test battery administered, suggesting that cognitive performance in this sample of acute SCI patients may not be influenced by the presence of depression.

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.

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.

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.

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.

The value of serial leg measurements for monitoring deep vein thrombosis in spinal cord injury.

Deep vein thrombosis (DVT) is a common complication of spinal cord injury (SCI). Many specialized SCI nursing units use serial leg measurements to establish clinical diagnosis of DVT, in spite of extensive studies showing that clinical signs and symptoms of DVT have a specificity and sensitivity hardly better than chance. For 30 patients who spent 920 days in an SCI intensive care unit, we collected daily serial calf and thigh measurements and the results of radiofibrinogen uptake test (RFUT) performed about every third day. Three criteria for clinical diagnosis of DVT found in the literature were used: an increase from baseline, an increase from the previous day or a right-left difference of a specific minimal size. The cut-off points for minimal size used were also those suggested by the literature: over .5 inch, over 1 cm, or 1.2 cm and over for women, 1.5 cm and over for men. We found such changes or differences correlated weakly or not at all with RFUT results, and symptomatic increases or differences occurred very frequently. Major factors presumably underlying the variability of measurements and their lack of sensitivity and specificity are: premorbid leg asymmetry; atrophy of the legs after SCI; true changes in circumference due to factors other than DVT; and lack of measurement reliability. It was concluded taking serial leg measurements is of no value in the SCI population. For those reluctant to abandon tradition, suggestions are provided for improving the quality of measurements and related decision making. Further research is needed.

Reasoning and the art of therapy for spinal cord injury.

In this pilot study, qualitative methodology was used to examine the clinical reasoning of four experienced occupational therapists as they presented and modified therapeutic activities to treat patients with spinal cord injuries. The therapists demonstrated the multi-layered thinking discovered in previous research, but hierarchical structuring of knowledge emerged as an unexpectedly dominant theme in their reasoning. Examples of hierarchical thinking about therapeutic activity included creating mental files of therapy tasks and materials sequenced from elementary to advanced and determining the level of difficulty at which to present an activity in order to build the patient's skills in a stepwise manner. The therapists reported that they learned to make decisions about the use of activities in treatment by observing skilled clinicians and by treating patients.

The Joint Protection Behavior Assessment: a reliability study.

OBJECTIVE: Of the various measures developed for studying persons with rheumatoid arthritis, only one that focuses on joint protection has undergone extensive testing, the Joint Protection Behavior Assessment (JPBA). The purpose of the present study was to examine the interrater and intrarater reliability of the JPBA. METHOD: Six healthy participants performed the JPBA under three test conditions (uninformed, informed, completely guided joint protection behavior). The 18 test performances were videotaped and scored by nine independent raters. RESULTS: Analysis of these data showed that interrater reliability (intraclass correlation coefficient [ICC]) was .90 or higher, and intrarater reliability was .95 or higher (ICC). The correlation between the JPBA and its two shortened versions was .95 or higher (ICC). Internal consistency was also high, with a coefficient alpha of 0.95 for the complete JPBA. Kappa values showed that for most subtasks, there was fair to excellent agreement between raters and consistency of raters over time. CONCLUSION: Our data suggest that the complete JPBA has excellent clinimetric properties and that the shortened versions are adequate for clinical situations. Some improvements in the test manual suggested by the present study may further improve the measure. A repeat of this study under real-world circumstances would provide an estimate of JPBA reliability in clinical practice.

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.

Measuring quality of life: methodological issues.

Quality of life is a term used in a number of disciplines, and definitions and conceptualizations vary from utility of health states to life satisfaction and from possession of socially desirable characteristics to positive affect. This article offers a taxonomy of measures of quality of life based on measurement characteristics, which are shown to closely parallel definitions and their underlying assumptions. The fact that basic philosophical issues and ethical assumptions underlie quality of life measurement is stressed. Clinimetric characteristics of quality of life measures (validity, reliability, responsiveness, sensitivity, practicality, face validity, interpretability) are reviewed. This article concludes with a discussion of a number of additional methodological issues, including the following: measurement of change in the quality of life; generic v disease-specific measures; the use of self-reports by persons with mental health or cognitive-communicative problems; and the use of proxy reporters of quality of life.