Standardized administration and scoring guidelines for the Spinal Cord Independence Measure Version 3.0 (SCIM-III).

STUDY DESIGN: Qualitative studies. OBJECTIVE: To develop clear and specific administration and scoring procedures for the Spinal Cord Independence Measure Version 3.0 as a performance-based and interview assessment. SETTING: Research lab. METHODS: Modified Delphi Technique survey methods were used in this study. Previously developed SCIM-III administration and scoring procedures for performance-based and interview versions were presented to clinicians experienced in SCI and SCIM-III using the Qualtrix (Qualtrics, Provo, UT) online survey platform. Summary and descriptive statistics were used to assess the percent agreement survey responses. RESULTS: Three survey rounds were necessary to achieve 80% agreement or above for the performance-based version. Two survey rounds were necessary to achieve 80% agreement or above on the interview version. CONCLUSIONS: This study describes the development of standardized administration and scoring procedures for the self-care and mobility sub-scales of the SCIM-III as a performance-based and interview version.

Promoting community engagement in spinal cord injury research: a case example.

Community engagement is an important method of knowledge translation in spinal cord injury (SCI) research where researchers collaborate with people with lived experience, care partners, and other research users to improve the quality of research. This perspective article aims to promote community engagement in SCI research by describing useful resources for its implementation and providing an example project using the North American Spinal Cord Injury Consortium (NASCIC) process for such partnerships. Researchers from the Jefferson College of Rehabilitation Sciences' (JCRS) Center for Outcomes and Measurement engaged NASCIC to create an advisory committee composed of four people living with SCI to make recommendations for the methods of a large-scale study to develop a clinical outcome assessment. The advisory committee made usable recommendations for enhancing recruitment methods and reducing burden and barriers to participation. The successful partnership between NASCIC and JCRS shows the feasibility and value of SCI community engagement in research.

Development of the International Spinal Cord Injury Basic Data Set for informal caregivers.

STUDY DESIGN: Mixed-methods, including expert consensus for initial development and a multi-center repeated measures design for field testing. OBJECTIVES: To develop an International Spinal Cord Injury Basic Data Set for caregivers of individuals with spinal cord injury/disorder (SCI/D) for use in research and clinical care settings. SETTING: International, multi-disciplinary working group with field testing in five North American pediatric rehabilitation hospitals. METHODS: The data set was developed iteratively through meetings and online surveys with a working group of experts in pediatric and adult SCI/D rehabilitation and caregivers of individuals with SCI/D. Initial reliability was examined through repeat administration of a beta form with a sample of caregivers recruited by convenience. The sample was characterized with descriptive statistics. Intra-rater reliability of variables was assessed using Intra-Class Correlations. RESULTS: The beta test form included 27 items, covering 3 domains: (1) demographic information for persons providing care; (2) caregiver's allocation of time and satisfaction; and (3) perceived burden of caregiving. Thirty-nine caregivers completed both administrations. Mean time for completion was 10 min. There was moderate to excellent reliability for the majority of variables, but results indicated necessary revisions to improve reliability and decrease respondent burden. The final version of the data form contains 7 items and is intended for self-administration among informal caregivers of individuals with SCI/D across the lifespan. CONCLUSIONS: The International SCI Basic Data Set for Informal Caregivers can be used to standardize data collection and reporting about informal caregivers for individuals with SCI/D to advance our understanding of this population and the data form has additional utility to screen for caregiver needs in clinical settings.

DTI of chronic spinal cord injury in children without MRI abnormalities (SCIWOMR) and with pathology on MRI and comparison to severity of motor impairment.

STUDY DESIGN: This investigation was a cohort study that included: 36 typically developing (TD) children and 19 children with spinal cord lesions who underwent spinal cord MRI. OBJECTIVES: To investigate diffusion tensor imaging (DTI) cervical and thoracic spinal cord changes in pediatric patients that have clinically traumatic and non-traumatic spinal cord injury (SCI) without MR (SCIWOMR) abnormalities. SETTING: Thomas Jefferson University, Temple University, Shriners Hospitals for Children all in Philadelphia, USA. METHODS: 36 TD children and 19 children with spinal cord lesions that represent either a chronic traumatic acquired SCI or chronic non-traumatic SCI (≥6 months post injury), age range, 6-16 years who underwent cervical and thoracic spinal cord MRI in 2014-2017. Additionally DTI was correlated to clinical American Spinal Injury Association Impairment Scale (AIS). RESULTS: Both SCIWOMR and MRI positive (+) groups showed abnormal FA and RD DTI values in the adjacent MRI-normal appearing segments of cephalad and caudal spinal cord compared to TD. The FA values demonstrated perilesional abnormal DTI findings in the middle and proximal segments of the cephalad and caudal cord in the SCIWOMR AIS A/B group compared to SCIWOMR AIS C/D group. CONCLUSIONS: We found DTI changes in children with SCIWOMR with different causes of spinal lesions. We also investigated the relationship between DTI and clinical AIS scores. This study further examined the potential diagnostic value of DTI and should be translatable to adults with spinal cord lesions.

Reducing Hospital Readmissions of Older Adults Pursuing Postacute Care at Skilled Nursing Facilities: A Scoping Review.

IMPORTANCE: Unplanned hospital readmissions can profoundly affect older adults' quality of life and the financial status of skilled nursing facilities (SNFs). Although many clinical practices focus on reforming these issues, occupational therapy's involvement remains unclear. OBJECTIVE: To explore clinical practices aimed at reducing hospital readmissions of older adults pursuing postacute care (PAC) at SNFs and describe how they align with occupational therapy's scope of practice. DATA SOURCES: We searched CINAHL, Scopus, PubMed, and OTseeker for articles published from January 2011 to February 2020. Study Selection and Data Collection: We conducted a scoping review of peer-reviewed articles with functional outcomes of clinical practices reducing unplanned hospital readmissions of patients older than age 65 yr pursuing PAC services in SNFs. Trained reviewers completed the title and abstract screens, full-text reviews, and data extraction. FINDINGS: Thirteen articles were included and focused on five areas: risk and medical disease management and follow-up, hospital-to-SNF transition, enhanced communication and care, function, and nutrition. Early coordination of care and early identification of patients' needs and risk of readmission were common features. All clinical practices aligned with occupational therapy domains and processes, but only 1 study specified occupational therapy as part of the research team. CONCLUSIONS AND RELEVANCE: Comprehensive, multipronged clinical practices encompassing care coordination and early identification and management of acute conditions are critical in reducing preventable readmissions among older adults pursuing PAC services in SNFs. Further research is needed to support occupational therapy's value in preventing hospital readmissions of older adults in this setting. What This Article Adds: This scoping review maps the presence of occupational therapy's domains and processes in the clinical practices that reduce hospital readmissions of older adults pursuing PAC services in SNFs. Findings provide occupational therapy practitioners with opportunities to assume roles beyond direct patient care, research, advocate, and publish more, thereby increasing their presence and adding value to occupational therapy interventions that reduce hospital readmissions.

Pediatric measure of participation short forms version 2.0: development and evaluation.

DESIGN: Mixed methods cohort study. OBJECTIVES: To develop and assess psychometric properties of the pediatric measure of participation (PMoP) short forms (SF) version 2.0. SETTING: Secondary analyses of data collected from 381 children with spinal cord injury (SCI) of at least 3-month duration living in the community, and 322 parents of children with SCI at three pediatric orthopedic hospitals in the United States. METHODS: Mixed methods iterative process to customize SF based on, highly relevant items, age and school analysis of item distributions; ceiling and floor effects; internal consistency and group-level reliability; correlation of SF scores with scores derived from the total item bank; and assessment of the degree to which item difficulty matched the abilities of children in the sample. RESULTS: PMoP SF V2.0 mean T scores ranged from 47.59 to 51.23. Overall, mean scores were somewhat higher for older children and parent respondents. Group-level reliability values ranged from 0.66 to 0.79; Cronbach's alpha values ranged from 0.79 to 0.90; ICC values ranged from 0.89 to 0.95. Pearson Correlations ranged from 0.80 to 0.95, showing good to strong correlation between scores from the SFs and total item bank for each domain. Test information function demonstrated that score estimates will be less precise at higher ends of the scale. CONCLUSIONS: PMoP SFs V2.0 contain items relevant to participation among children with SCI, and are tailored for four age groups and school status. They are recommended for use when computer adaptive testing (CAT) is not possible.

Adaptive trial designs for spinal cord injury clinical trials directed to the central nervous system.

STUDY DESIGN: Narrative review. PURPOSE: To provide an overview of adaptive trial designs, and describe how adaptive methods can address persistent challenges encountered by randomized controlled trials of people with spinal cord injury (SCI). RESULTS: With few exceptions, adaptive methodologies have not been incorporated into clinical trial designs of people with SCI. Adaptive methods provide an opportunity to address high study costs, slow recruitment, and excessive amount of time needed to carry out the trial. The availability of existing SCI registries are well poised to support modeling and simulation, both of which are used extensively in adaptive trial designs. Eight initiatives for immediate advancement of adaptive methods in SCI were identified. CONCLUSION: Although successfully applied in other fields, adaptive clinical trial designs in SCI clinical trial programs have been narrow in scope and few in number. Immediate application of several adaptive methods offers opportunity to improve efficiency of SCI trials. Concerted effort is needed by all stakeholders to advance adaptive clinical trial design methodology in SCI.

Scoping Review of School-to-Work Transition for Youth With Intellectual Disabilities: A Practice Gap.

IMPORTANCE: Youth with intellectual disabilities (ID) have persistently poor work outcomes. Occupational therapy can support school-to-work transition but is underrepresented in transition practice. OBJECTIVE: To identify and describe interventions within the scope of occupational therapy for youth with ID who are transitioning from school to work. DATA SOURCES: MEDLINE, ERIC, PsycINFO, and CINAHL were searched, and hand searching was performed in relevant peer-reviewed journals. STUDY SELECTION AND DATA COLLECTION: Included were peer-reviewed, English-language articles published from 2004 to 2017 describing studies focused on youth with ID with no significant co-occurring physical diagnoses who were transitioning from U.S.-based school settings to paid employment. Data extraction was managed using Google Drive. Data were organized on extraction sheets by trained reviewers. The quality of each study was assessed using questions adapted from the Critical Appraisal Skills Program checklist. FINDINGS: A total of 35 articles were included, 7 of which used randomized controlled designs. All articles described interventions aligned with the Occupational Therapy Practice Framework: Domain and Process (3rd ed.), but specific mention of occupational therapy was notably absent from the literature. Interventions had little and generally low-level evidence supporting their use. CONCLUSIONS AND RELEVANCE: Significant and concerning gaps exist in the literature on school-to-work transition for youth with ID, likely impeding evidence-based practice. No included article mentioned occupational therapy or had a contributor who was an occupational therapy practitioner. Practitioners should advocate for occupational therapy's role in transition and contribute reports of occupational therapy transition services for youth with ID to the literature. WHAT THIS ARTICLE ADDS: This study demonstrates that occupational therapy is poorly represented in literature describing transition services for youth with ID. Although the articles described interventions within the occupational therapy domain, these interventions were not provided by occupational therapy practitioners and did not have a strong evidence base.

Determining a transitional scoring link between PROMIS® pediatric and adult physical health measures.

PURPOSE: Having independent versions of the PROMIS® scales (for Pediatric and Adults) is problematic as scores cannot be evaluated longitudinally as individuals move from childhood into adulthood. The primary aim of this research project is to use item response theory (IRT) to develop a transitional scoring link (or "crosswalk") between the PROMIS adult and pediatric physical health measures. SETTING: Sample 1 was collected at 6 rehabilitation hospitals in the U.S., and participants in Sample 2 were recruited from public health insurance programs and an online research panel. METHODS: PROMIS pediatric and adult physical function, mobility, upper extremity, fatigue, and pain measures were administered to a sample of 874 individuals aged 14-20 years old with special health needs and a sample of 641 individuals aged 14-25 years with a disability. IRT-based scores were linked using a linear approximation to calibrated projection. RESULTS: Estimated latent variable correlations ranged between 0.84 and 0.95 for the PROMIS pediatric and adult scores. Root Expected Mean Square Difference values were below the 0.08 threshold in all cases except when comparing genders on the Mobility (0.097) and Pain (0.10) scales in the special health care needs sample. Sum score conversion tables for the pediatric and adult PROMIS measures are presented. CONCLUSIONS: The linking coefficients can be used to calculate scale scores on PROMIS adult measures from pediatric measure scores and vice versa. This may lead to more accurate measurement in cross-sectional studies spanning multiple age groups or longitudinal studies that require comparable measurement across distinct developmental stages.

Tracking Spinal Cord Injury Functional Outcomes Across the Lifespan: Validation of Linking Coefficients.

OBJECTIVE: Validation of linking coefficients to transform Pediatric Spinal Cord Injury Activity Measure (PEDI-SCI/AM) scores to adult Spinal Cord Injury-Functional Index (SCI-FI) scores. DESIGN: This cross-sectional study administered PEDI-SCI/AM and SCI-FI computerized adaptive tests (CATs) and short forms (SFs) to children with SCI and parents or caregivers. SETTING: Hospitals, university, and rehabilitation institute. PARTICIPANTS: About 107 children with SCI and 96 parent or caregivers. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Linking coefficients estimated SCI-FI (est-SCI-FI) scores from PEDI-SCI/AM scores for matched domains. Correlations between est-SCI-FI and actual SCI-FI scores were calculated. If correlations exceeded the criterion linking (0.866), the following analyses to compare est-SCI-FI and actual SCI-FI scores were conducted: paired t tests, intraclass correlation coefficients (ICCs 3, 1), percent of cases with absolute score differences at different thresholds. RESULTS: Two matched domains, PEDI-SCI/AM Daily Routine/SCI-FI Self-Care and PEDI-SCI/AM General Mobility/SCI-FI Basic Mobility, met the linking criterion for both respondent-types (parent and child) and administration modes (CAT and SF). PEDI-SCI/AM Daily Routine and SCI-FI Fine Motor Function did not meet linking criterion for respondent type or mode. The linking criterion was met for wheelchair domains (child SF and CAT) and ambulation domains (child SF only). Significant differences between est-SCI-FI and actual SCI-FI scores were noted for all matched domains except Daily Routine/Self-Care (child SF only; parent SF and CAT). ICC values showed excellent agreement (range=0.75-0.89). Absolute differences between est-SCI-FI and actual SCI-FI scores were less than 1 standard deviation (except wheelchair CAT child). CONCLUSIONS: Linking coefficients applied to PEDI-SCI/AM scores can provide valid SCI-FI estimates that vary by domain, mode, and respondent type.

Evaluation of the graded redefined assessment of strength, sensibility and prehension (GRASSP) in children with tetraplegia.

STUDY DESIGN: Psychometric study. OBJECTIVE: To validate the GRASSP in pediatric SCI populations and establish the lower age of test administration. SETTING: United States: Pennsylvania, Maryland, Illinois, Michigan, California, Texas. METHODS: Mean, SD and range of scores were calculated and examined for known-group differences. Test-retest reliability was measured by the intra-class correlation, concurrent validity of the GRASSP against the SCIM, SCIM-SS, and the CUE-Q was measured by the Spearman correlation. RESULTS: GRASSP scores differed between participants with motor complete and incomplete injuries (p = <0.0001-0.036). Test-retest reliability was strong (ICC = 0.99). Weak correlation with the total SCIM (r = 0.33-0.66), and moderate to strong correlation with the SCIM-SC (r = 37-0.70) and CUE-Q (r = 0.40-0.84). CONCLUSION: Results support the validity of the GRASSP and provide evidence that the scores are reliable when administered to children. The GRASSP sensory and strength subtests are recommended for children beginning at 6 years of age, and the GRASSP prehension performance/ability subtest for children beginning at 8 years of age. Normative data are needed for the performance components of the GRASSP.

Despite limitations in content range, the SCIM-III is reproducible and a valid indicator of physical function in youths with spinal cord injury and dysfunction.

STUDY DESIGN: Multi-center, repeated measures OBJECTIVES: Evaluate psychometric properties of the SCIM-III in children. SETTING: Seven facilities in North America METHODS: One-hundred and twenty-seven youths, mean age of 10.8 years and chronic spinal cord injury/dysfunction completed two administrations of the Spinal Cord Independence Measure-III (SCIM-III). Mean, standard deviation, range values were calculated for SCIM-III total and subscales for the entire sample, four age groups and injury characteristics. Test-retest reliability, concurrent validity, and floor and ceiling effects were examined. RESULTS: Total SCIM-III and self-care (SC) subscale scores for the youngest age group were lower than those for the three older age groups. There were statistically significant differences in SC subscale scores between neurological level (NL) C5-T1 and T2 -T12; C5-T1 and L1-S4/5; and T2-T12 and L1-S4/5 and in in-room, and indoor/outdoor mobility subscale scores between C1-C4 and T2-T12; C1-C4 and L1-S4/5; C5-T1 and T2-T12; C5-T1 and L1-S4/5; and T2-T12 and L1-S4/5. All scores between motor complete and motor incomplete differed. Test-retest reliability was good (ICC values = > 0.84) and there was moderate to strong correlation between SCIM-III and the FIM® Instrument (r = 0.77-0.92). Ceiling effects were present in the SC subscale for the oldest age group (24%) and for NL L1-S4/5 (35.5%) and in in-room mobility subscale for 6-12 (45.7%), 13-15 (30.43%) and 16-17 (60%) ages, paraplegia (42.4%), tetraplegia (37.1%), incomplete injuries (50%), and T2-T12 (38%) and L1-S4/5 (100%) NL. CONCLUSION: Despite limitations in content range, the SCIM-III is reproducible, and a valid indicator of physical functioning in youth with SCI/D 6 years of age and older. SPONSORSHIP: The study was funded by the Craig H. Neilsen Foundation, Spinal Cord Injury Research on the Translation Spectrum, Senior Research Award Grant #282592 (Mulcahey, PI).

Application of Color Transformation Techniques in Pediatric Spinal Cord MR Images: Typically Developing and Spinal Cord Injury Population.

The purpose of this study was to evaluate an improved and reliable visualization method for pediatric spinal cord MR images in healthy subjects and patients with spinal cord injury (SCI). A total of 15 pediatric volunteers (10 healthy subjects and 5 subjects with cervical SCI) with a mean age of 11.41 years (range 8-16 years) were recruited and scanned using a 3.0T Siemens Verio MR scanner. T2-weighted axial images were acquired covering entire cervical spinal cord level C1 to C7. These gray-scale images were then converted to color images by using five different techniques including hue-saturation-value (HSV), rainbow, red-green-blue (RGB), and two enhanced RGB techniques using automated contrast stretching and intensity inhomogeneity correction. Performance of these techniques was scored visually by two neuroradiologists within three selected cervical spinal cord intervertebral disk levels (C2-C3, C4-C5, and C6-C7) and quantified using signal to noise ratio (SNR) and contrast to noise ratio (CNR). Qualitative and quantitative evaluation of the color images shows consistent improvement across all the healthy and SCI subjects over conventional gray-scale T2-weighted gradient echo (GRE) images. Inter-observer reliability test showed moderate to strong intra-class correlation (ICC) coefficients in the proposed techniques (ICC > 0.73). The results suggest that the color images could be used for quantification and enhanced visualization of the spinal cord structures in addition to the conventional gray-scale images. This would immensely help towards improved delineation of the gray/white and CSF structures and further aid towards accurate manual or automatic drawings of region of interests (ROIs).

Evaluation of the Walking Index for Spinal Cord Injury II (WISCI-II) in children with Spinal Cord Injury (SCI).

STUDY DESIGN: Mixed methods were used in this study. The appropriateness of the levels of the Walking Index for Spinal Cord Injury II (WISCI-II) for application in children was critically reviewed by physical therapists using the Modified Delphi Technique, and the inter- and intra-rater reliability of the WISCI-II in children was evaluated. OBJECTIVES: To examine the construct validity, and to establish reliability of the WISCI-II related to its use in children with spinal cord injury (SCI). SETTING: United States of America. METHODS: Using a Modified Delphi Technique, physical therapists critically reviewed the WISCI-II levels for pediatric utilization. Concurrently, ambulatory children under age 18 years with SCI were evaluated using the WISCI-II on two occasions by the same therapist to establish intra-rater reliability. One trial was photographed and de-identified. Each photograph was reviewed by four different physical therapists who gave WISCI-II scores to establish inter-rater reliability. Summary and descriptive statistics were used to calculate the frequency of yes/no responses for each WISCI-II level question and to determine the percent agreement for each question. Inter- and intra-rater reliability was calculated using interclass correlation coefficients (ICCs) with 95% confidence intervals (CI). RESULTS: Construct validity was confirmed after one Delphi round during which at least 80% agreement was established by 51 physical therapists on the appropriateness of the WISCI-II levels for children. Fifty-two children with SCI aged 2-17 years completed repeated WISCI-II assessments and 40 de-identified photographs were scored by four physical therapists. Intra- and inter-rater reliability was high (ICC=0.997, CI=0.995-0.998 and ICC=0.97, CI=0.95-0.98, respectively). CONCLUSION: This study demonstrates support for the use of the WISCI-II in ambulatory children with SCI. SPONSORSHIP: This study was funded by the Craig H Neilsen Foundation, Spinal Cord Injury Research on the Translation Spectrum, Senior Research Award #282592 (Mulcahey, PI).

Reduced FOV diffusion tensor MR imaging and fiber tractography of pediatric cervical spinal cord injury.

STUDY DESIGN: Quantitative study. OBJECTIVES: To evaluate the effectiveness of pediatric spinal cord diffusion tensor tractography (DTT) generated from reduced field of view diffusion tensor imaging (DTI) data and investigate whether there are differences in these values between typically developing (TD) subjects and patients with spinal cord injury (SCI). SETTING: Temple University Hospital and Shriners Hospitals for Children-Philadelphia, USA. METHODS: A total of 20 pediatric subjects including 10 healthy subjects (age 15.13±3.51 years (mean±s.d.) and age range 11-21 years) and 10 subjects with SCI in the cervical area (age 13.8±3.26 years and age range 8-20 years) were recruited, and scanned using a 3.0T MR scanner. Quantitative parameters of DTI and fiber tracking, such as mean fractional anisotropy (FA), apparent diffusion coefficient (ADC), mean length of fiber tracts and tract density, were calculated for each subject. RESULTS: Subjects with SCI showed reduced FA and tract density, and increased ADC values and length of fiber tracts, compared with controls. Statistically significant differences were seen in FA (P=0.0238) and tract density (P=0.0005) between controls and subjects with SCI, whereas there were no significant differences in ADC values and length of fiber tracts. The tractography visually showed that the white matter tracts (blue color) of the SCI patients were overall less abundant and less organized compared with control cases. CONCLUSION: The results show that DTI and DTT could be used as surrogate markers for quantification and visualization of the injured spinal cord.

Relevance of the international spinal cord injury basic data sets to youth: an Inter-Professional review with recommendations.

STUDY DESIGN: Mixed methods, using the Modified Delphi Technique and Expert Panel Review. OBJECTIVE: To evaluate the utility and relevance of the International Spinal Cord Injury (SCI) Core and Basic Data Sets for children and youth with SCI. SETTING: International. METHODS: Via 20 electronic surveys, an interprofessional sample of healthcare professionals with pediatric SCI experience participated in an iterative critical review of the International SCI Data Sets, and submitted suggestions for modifications for use with four pediatric age groups. A panel of 5 experts scrutinized the utility of all data sets, correlated any modifications with the developing National Institute of Neurological Disorders and Stroke (NINDS) pediatric SCI Common Data Elements (CDE) and distributed final recommendations for modifications required to the adult data sets to the International SCI Data Set Committee and the associated Working Groups. RESULTS: Two International SCI Data Sets were considered relevant and appropriate for use with children without any changes. Three were considered not appropriate or applicable for use with children, regardless of age. Recommendations were made for five data sets to enhance their relevance and applicability to children across the age groups, and recommendations for seven data sets were specific to infants and younger children. CONCLUSIONS: The results of this critical review are significant in that substantive recommendations to align the International SCI Core and Basic Data Sets to pediatric practice were made. SPONSORSHIP: This project was funded by the Rick Hansen Institute Grant# 2015-27.

International spinal cord injury bowel function basic data set (Version 2.0).

STUDY DESIGN: International expert working group. OBJECTIVES: To revise the International Spinal Cord Injury (SCI) Bowel Function Basic Data Set as a standardized format for the collecting and reporting of a minimal amount of information on bowel function in clinical practice and research. SETTING: Working group appointed by the American Spinal injury association (ASIA) and the International Spinal Cord Society (ISCoS). METHODS: The draft prepared by the working group was reviewed by the International SCI Data Set Committee and later by members of the ISCoS Executive and Scientific Committees and the ASIA board. The revised data set was posted on the ASIA and ISCoS websites for 1 month to allow further comments and suggestions. Changes resulting from a Delphi process among experts in children with SCI were included. Members of ISCoS Executive and Scientific Committees and the ASIA board made a final review and approved the data set. RESULTS: The International SCI Bowel Function Basic Data Set (Version 2.0) consists of the following 16 items: date of data collection, gastrointestinal and anal sphincter dysfunction unrelated to SCI, surgical procedures on the gastrointestinal tract, defecation method and bowel-care procedures, average time required for defecation, frequency of defecation, uneasiness, headache or perspiration during defecation, digital stimulation or evacuation of the anorectum, frequency of fecal incontinence, flatus incontinence, need to wear pad or plug, oral laxatives and prokinetics, anti-diarrheal agents, perianal problems, abdominal pain and discomfort and the neurogenic bowel dysfunction score. CONCLUSION: The International SCI Bowel Function Basic Data Set (Version 2.0) has been developed.

Recommendations for the National Institute for Neurologic Disorders and Stroke spinal cord injury common data elements for children and youth with SCI.

STUDY DESIGN: In 2014, the adult spinal cord injury (SCI) common data element (CDE) recommendations were made available. This project was a review of the adult SCI CDE for relevance to children and youth with SCI. OBJECTIVES: The objective of this study was to review the National Institute of Neurologic Disorders and Stroke (NINDS) adult SCI CDEs for relevance to children and youth with SCI. SETTING: International. METHODS: The pediatric working group consisted of international members with varied fields of expertise related to pediatric SCI. The group convened biweekly meetings for 6 months in 2015. All of the adult SCI CDEs were reviewed, evaluated and modified/created for four age groups: 0-5 years, 6-12 years, 13-15 years and 16-18 years. Whenever possible, results of published research studies were used to guide recommendations. In the absence of empirical support, grey literature and international content expert consensus were garnered. Existing pediatric NINDS CDEs and new CDEs were developed in areas where adult recommendations were not appropriate. After internal working group review of domain recommendations, these pediatric CDEs were vetted during a public review from November through December 2015. RESULTS: Version 1.0 of the pediatric SCI CDEs was posted in February 2016. CONCLUSION: The pediatric SCI CDEs are incorporated directly into the NINDS SCI CDE sets and can be found at https://commondataelements.ninds.nih.gov.

Alignment of Outcome Instruments Used in Hand Therapy With the Occupational Therapy Practice Framework: Domain and Process and the International Classification of Functioning, Disability and Health: A Scoping Review.

OBJECTIVE: We sought to identify outcome instruments used in rehabilitation of the hand and upper extremity; to determine their alignment with the constructs of the International Classification of Functioning, Disability and Health (ICF) and the Occupational Therapy Practice Framework: Domain and Process; and to report gaps in the constructs measured by outcome instruments as a basis for future research. METHOD: We searched CINAHL, MEDLINE, OTseeker, and the Cochrane Central Register of Controlled Trials using scoping review methodology and evaluated outcome instruments for concordance with the ICF and the Framework. RESULTS: We identified 18 outcome instruments for analysis. The findings pertain to occupational therapists' focus on body functions, body structures, client factors, and activities of daily living; a gap in practice patterns in use of instruments; and overestimation of the degree to which instruments used are occupationally based. CONCLUSION: Occupational therapy practitioners should use outcome instruments that embody conceptual frameworks for classifying function and activity.

Linkage between the PROMIS® pediatric and adult emotional distress measures.

PURPOSE: Research studies that measure health-related quality of life (HRQOL) in both children and adults and longitudinal studies that follow children into adulthood need measures that can be compared across these age groups. This study links the PROMIS pediatric and adult emotional distress measures using data from participants with diverse health conditions and disabilities. METHODS: Analyses were conducted and compared in two separate samples to confirm the stability of results. One sample (n = 874) included individuals aged 14-20 years with special health care needs and who require health services. The other sample (n = 641) included individuals aged 14-25 years who have a physical or cognitive disability. Participants completed both PROMIS pediatric and adult measures. Item response theory-based scores were linked using the linear approximation to calibrated projection. RESULTS: The estimated latent-variable correlation between pediatric and adult PROMIS measures ranged from 0.87 to 0.94. Regression coefficients ß 0 (intercept) and ß 1 (slope), and mean squared error are provided to transform scores from the pediatric to the adult measures, and vice versa. CONCLUSIONS: This study used a relatively new linking method, calibrated projection, to link PROMIS pediatric and adult measure scores, thus expanding the use of PROMIS measures to research that includes both populations.