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OBJECTIVE: To identify clinical factors (physical and psychological symptoms and post-traumatic growth) that predict social participation outcome at 24-month after burn injury. DESIGN: A prospective cohort study based on Burn Model System National Database. SETTING: Burn Model System centers. PARTICIPANTS: 181 adult participants less than 2 years after burn injury (N=181). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Demographic and injury variables were collected at discharge. Predictor variables were assessed at 6 and 12 months: Post-Traumatic Growth Inventory Short Form (PTGI-SF), Post-Traumatic Stress Disorder Checklist Civilian Version (PCL-C), Patient-Reported Outcomes Measurement Information System (PROMIS-29) Depression, Anxiety, Sleep Disturbance, Fatigue, and Pain Interference short forms, and self-reported Heat Intolerance. Social participation was measured at 24 months using the Life Impact Burn Recovery Evaluation (LIBRE) Social Interactions and Social Activities short forms. RESULTS: Linear and multivariable regression models were used to examine predictor variables for social participation outcomes, controlling for demographic and injury variables. For LIBRE Social Interactions, significant predictors included the PCL-C total score at 6 months (ß=-0.27, P<.001) and 12 months (ß=-0.39, P<.001), and PROMIS-29 Pain Interference at 6 months (ß=-0.20, P<.01). For LIBRE Social Activities, significant predictors consisted of the PROMIS-29 Depression at 6 months (ß=-0.37, P<.001) and 12 months (ß=-0.37, P<.001), PROMIS-29 Pain Interference at 6 months (ß=-0.40, P<.001) and 12 months (ß=-0.37, P<.001), and Heat Intolerance at 12 months (ß=-4.55, P<.01). CONCLUSIONS: Post-traumatic stress and pain predicted social interactions outcomes, while depression, pain and heat intolerance predicted social activities outcomes in people with burn injury.
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Queimaduras , Participação Social , Adulto , Humanos , Estudos Prospectivos , Qualidade de Vida/psicologia , Dor , Queimaduras/psicologiaRESUMO
OBJECTIVE: To examine the moderation effects of daily behavior on the associations between symptoms and social participation outcomes after burn injury. DESIGN: A 6-month prospective cohort study. SETTING: Community. PARTICIPANTS: Twenty-four adult burn survivors. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Symptoms and social participation outcomes were assessed weekly using smartphone surveys, including symptoms of pain (Patient-Reported Outcomes Measurement Information System [PROMIS] Pain Intensity and Pain Interference), anxiety (PROMIS Anxiety), and depression (Patient Health Questionnaire), as well as outcomes of social interactions and social activities (Life Impact Burn Recovery Evaluation [LIBRE] Social Interactions and Social Activities). Daily behaviors were automatically recorded by a smartphone application and smartphone logs, including physical activity (steps, travel miles, and activity minutes), sleep (sleep hours), and social contact (number of phone calls and message contacts). RESULTS: Multilevel models controlling for demographic and burn injury variables examined the associations between symptoms and social participation outcomes and the moderation effects of daily behaviors. Lower (worse) LIBRE Social Interactions and LIBRE Social Activities scores were significantly associated with higher (worse) PROMIS Pain Intensity, PROMIS Pain Interference, PROMIS Anxiety, and Patient Health Questionnaire-8 scores (P<.05). Additionally, daily steps and activity minutes were associated with LIBRE Social Interactions and LIBRE Social Activities (P<.05), and significantly moderated the association between PROMIS Anxiety and LIBRE Social Activities (P<.001). CONCLUSIONS: Social participation outcomes are associated with pain, anxiety, and depression symptoms after burn injury, and are buffered by daily physical activity. Future intervention studies should examine physical activity promotion to improve social recovery after burns.
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This review aims to identify and evaluate digital interventions for social participation in the growing population of adults with long-term physical conditions. Articles were sourced from MEDLINE, EMBASE, CINAHL and PsycINFO databases using subject headings and keywords related to "social participation" and "digital technology". Studies that adopted digital technology interventions to improve social participation in adults with long-term physical conditions were included. Data on study methodology, participant and digital intervention characteristics, and findings related to social participation were extracted. The search yielded a total of 4646 articles and 14 articles met criteria for final review with five randomized controlled trials, two non-randomized clinical trials and seven one-group pretest-posttest clinical trials. Studies were organized based on the digital intervention strategy implemented to improve social participation: group support (n = 4), individual skill training or counseling (n = 6), education and support (n = 3), and mixed intervention (n = 1). The group support interventions developed a social network among participants through videoconference, app, or virtual reality platform. Three studies reported positive improvements in different aspects of social participation. Individual skill training or counseling mainly utilized phone calls to help participants cope with activity participation and interpersonal relationship issues. Only two studies demonstrated benefits for social participation. The education and support intervention, which used messages and website information to increase participants' knowledge and provide support, showed positive findings in three studies. This review suggests digital interventions for improving social participation in adults with long-term physical conditions are feasible and the effectiveness of different strategies may vary.Registration: This review was prospectively registered on the International Prospective Register of Systematic Reviews (PROSPERO) (registry number: CRD42021254105).
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Transtornos Mentais , Adulto , Humanos , Comportamento SocialRESUMO
OBJECTIVE: To estimate Spinal Cord Injury Functional Index Assistive Technology (SCI-FI/AT) scores from FIM motor items. DESIGN: Secondary data analysis. SETTING: Fourteen Spinal Cord Injury Model Systems (SCIMS) programs. PARTICIPANTS: Persons with traumatic spinal cord injury (SCI) discharged from inpatient rehabilitation at 14 SCIMS programs (N=1237). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: FIM motor items were matched to SCI-FI/AT domains and summary scores for each measure were developed. The kernel-based method was employed to develop a concordance table to estimate SCI-FI/AT domain summary scores from content-matched FIM motor item summary scores. We conducted analyses to compare agreement between actual SCI-FI/AT summary scores (actual SCI-FI/AT_S) and estimated SCI-FI/AT summary scores (est-SCI-FI/AT_S) for the total sample and for participants with different SCI injury categories. RESULTS: Nine FIM items matched SCI-FI/AT basic mobility and self-care domain content. Pearson correlations for actual and est-SCI-FI/AT_S scores (0.79) were adequate for using concordance linking methods. Intraclass correlation coefficient values (0.79; 95% confidence interval, 0.77-0.81) indicated moderate reliability. t tests revealed no significant differences between actual and est-SCI-FI/AT_S scores in the total sample. For almost 60% of the sample, actual and est-SCI-FI/AT_S score differences were <5 points (half of a SD). Greater differences between actual and est-SCI-FI/AT_S scores were noted for persons with tetraplegia American Spinal Injury Association Impairment Scales (AISs) A, B, and C. CONCLUSIONS: Despite differences between the FIM and SCI-FI/AT assessments, we developed a concordance table to estimate self-care and basic mobility SCI-FI/AT scores from content-matched FIM motor item scores. This concordance table allows researchers to merge FIM data with SCI-FI/AT data to analyze SCI functional outcomes at the group level. However, owing to greater differences between actual and estimated scores, the concordance table should be used with caution to interpret scores for those with cervical-level injuries AISs A, B, C.
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Tecnologia Assistiva , Traumatismos da Medula Espinal , Atividades Cotidianas , Avaliação da Deficiência , Humanos , Reprodutibilidade dos Testes , Autocuidado , Traumatismos da Medula Espinal/reabilitaçãoRESUMO
OBJECTIVE: To evaluate the psychometric properties of the Spinal Cord Injury-Functional Index (SCI-FI) instruments in a community-dwelling sample. DESIGN: Cross-sectional study. SETTING: Community setting. PARTICIPANTS: Individuals (N=269) recruited from 6 SCI Model Systems sites. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participants completed computer adaptive test and short form versions of 4 SCI-FI/Capacity (C) banks (ie, Ambulation, Basic Mobility, Fine Motor, Self-Care) and 1 SCI-FI/Assistive Technology (AT) bank (Wheelchair Mobility) at baseline and after 2 weeks. The Self-Report Functional Measure (SRFM) and the clinician-rated motor FIM were used to evaluate evidence of convergent validity. RESULTS: Pearson correlations, intraclass correlation coefficients, minimal detectable change, and Bland-Altman plots supported the test-retest reliability of the SCI-FI instruments. Correlations were large with the SRFM (.69-.89) and moderate-to-large for the FIM instrument (.44-.64), supporting convergent validity. Known-groups validity was demonstrated by a significant main effect of injury level on all instruments and a main effect of injury completeness on the SCI-FI/C instruments. A ceiling effect was detected for individuals with incomplete paraplegia on the Fine Motor/C and Self-Care/C Short Forms. CONCLUSION: Findings support the test-retest reliability, convergent validity, and known-groups validity of the SCI-FI/C instruments and the SCI-FI/AT Wheelchair Mobility instruments for use by community-dwelling individuals.
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Vida Independente , Traumatismos da Medula Espinal , Atividades Cotidianas , Estudos Transversais , Avaliação da Deficiência , Humanos , Reprodutibilidade dos TestesRESUMO
OBJECTIVE: To explore trajectories of functional recovery that occur during the first 2 years after spinal cord injury (SCI). DESIGN: Observational cohort study. SETTING: Eight SCI Model System sites. PARTICIPANTS: A total of 479 adults with SCI completed 4 Spinal Cord Injury-Functional Index (SCI-FI) item banks within 4 months of injury and again at 2 weeks, 3, 6, 12, and 24 months after baseline assessment (N=479). INTERVENTION: None. MAIN OUTCOME MEASURES: SCI-FI Basic Mobility/Capacity (C), Fine Motor Function/C, Self-care/C, and Wheelchair Mobility/Assistive Technology (AT) item banks. RESULTS: Growth mixture modeling was used to identify groups with similar trajectory patterns. For the Basic Mobility/C and Wheelchair Mobility/AT domains, models specifying 2 trajectory groups were selected. For both domains, a majority class exhibited average functional levels and gradual improvement, primarily in the first 6 months. A smaller group of individuals made gradual improvements but had greater initial functional limitations. The Self Care/C domain exhibited a similar pattern; however, a third, small class emerged that exhibited substantial improvement in the first 6 months. Finally, for individuals with tetraplegia, trajectories of Fine Motor Function/C scores followed 2 patterns, with individuals reporting generally low initial scores and then making either modest or large improvements. In individual growth curve models, injury/demographic factors predicted initial functional levels but less so regarding rates of recovery. CONCLUSIONS: Trajectories of functional recovery followed a small number of change patterns, although variation around these patterns emerged. During the first 2 years after initial hospitalization, SCI-FI scores showed modest improvements; however, substantial improvements were noted for a small number of individuals with severe limitations in fine motor and self-care function. Future studies should further explore the personal, medical, and environmental characteristics that influence functional trajectories during these first 2 years and beyond.
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Avaliação da Deficiência , Traumatismos da Medula Espinal , Atividades Cotidianas , Adulto , Humanos , Quadriplegia , Recuperação de Função FisiológicaRESUMO
OBJECTIVE: To establish responsiveness of 3 Spinal Cord Injury-Functional Index/Capacity (SCI-FI/C) item banks in the first year after spinal cord injury (SCI). DESIGN: Longitudinal patient-reported outcomes assessment replicated through secondary analysis of an independent data set. SETTING: A total of 8 SCI Model Systems rehabilitation hospitals in the United States. PARTICIPANTS: Study 1 participants included 184 adults with recent (≤4 months) traumatic SCI and 221 community-dwelling adults (>1 year post injury) (N=405). Study 2 participants were 418 individuals with recent SCI (≤4 months) (N=418). INTERVENTIONS: In study 1, SCI-FI/C computer adaptive tests were presented in a standardized interview format either in person or by phone call at baseline and 6-month follow-up. Responsiveness was examined by comparing 6-month changes in SCI-FI scores within and across samples (recently injured vs community-dwelling) because only the recent injury sample was expected to exhibit change over time. Effect sizes were also computed. In study 2, the study 1 results were cross-validated in a second sample with recent SCI 1 year after baseline measurement. Study 2 also compared the SCI-FI/C measures' responsiveness to that of the Self-reported Functional Measure (SRFM) and stratified results by injury diagnosis and completeness. MAIN OUTCOME MEASURES: The SCI-FI Basic Mobility/C, Self-care/C and Fine Motor/C item banks (study 1 and study 2); Self-reported Functional Measure SRFM (study 2 only). RESULTS: In study 1, changes in SCI-FI/C scores between baseline and 6-month follow-up were statistically significant (P<.01) for recently injured individuals. SCI-FI Basic Mobility/C, Self-care/C, and Fine Motor/C item banks demonstrated small to medium effect sizes in the recently injured sample. In the community-dwelling sample, all SCI-FI/C effects were negligible (ie, effect size<0.08). Study 2 results were similar to study 1. As expected, SCI-FI Basic Mobility/C and Self-care/C were responsive to change for all individuals in study 2, whereas the SCI-FI Fine Motor/C was responsive only for individuals with tetraplegia and incomplete paraplegia. The SRFM demonstrated a medium effect size for responsiveness (effect size=0.65). CONCLUSIONS: The SCI-FI Basic Mobility/C and Self-care/C banks demonstrate adequate sensitivity to change at 6 months and 1 year for all individuals with SCI, while the SCI-FI/C Fine Motor item bank is sensitive to change in individuals with tetraplegia or incomplete paraplegia. All SCI-FI/C banks demonstrate stability in a sample not expected to change. Results provide support for the use of these measures for research or clinical use.
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Avaliação da Deficiência , Traumatismos da Medula Espinal , Atividades Cotidianas , Adulto , Humanos , Paraplegia/reabilitação , Quadriplegia/reabilitação , Traumatismos da Medula Espinal/reabilitação , Estados UnidosRESUMO
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.
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Traumatismos da Medula Espinal , Adolescente , Criança , Estudos de Coortes , Humanos , Psicometria , Qualidade de Vida , Reprodutibilidade dos Testes , Traumatismos da Medula Espinal/complicações , Inquéritos e QuestionáriosRESUMO
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.
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Avaliação da Deficiência , Traumatismos da Medula Espinal/fisiopatologia , Atividades Cotidianas , Adolescente , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Limitação da Mobilidade , Medidas de Resultados Relatados pelo Paciente , Autocuidado , Cadeiras de RodasRESUMO
BACKGROUND: The intent of this study was to examine and compare the ability to detect change of two patient reported outcome (PRO) instruments that use a computerized adaptive test (CAT) approach to measurement. The Patient Reported Outcomes Measurement Information System (PROMIS®) Physical Function scale is a generic PRO, while the Osteoarthritis Computerized Adaptive Test (OA-CAT) is an osteoarthritis-specific PRO. METHODS: This descriptive, longitudinal study was conducted in a community setting, involving individuals from the greater Boston area. INCLUSION CRITERIA: age > 50, self-reported doctor-diagnosed knee osteoarthritis (OA) and knee pain. The PROMIS® Physical Function CAT and OA-CAT Functional Difficulty scale were administered at baseline and at the conclusion of a 6-week exercise program. Effect sizes (ES) were calculated for both measures, and bootstrap methods were used to construct confidence intervals and to test for significant ES differences between the measures. RESULTS: The OA-CAT Functional Difficulty scale achieved an ES of 0.62 (0.43, 0.87) compared to the PROMIS® Physical Function CAT ES of 0.42 (0.24, 0.63). ES estimates for the two CAT measures were not statistically different. CONCLUSIONS: The condition-specific OA-CAT and generic PROMIS® Physical Function CAT both demonstrated the ability to detect change in function. While the OA-CAT scale showed larger effect size, no statistically significant difference was found in the effect size estimates for the generic and condition-specific CATs. Both CATs have potential for use in arthritis research. TRIAL REGISTRATION: This trial is registered with ClinicalTrials.gov on 6/21/11 (Identifier NCT01394874 ).
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Adaptação Fisiológica/fisiologia , Diagnóstico por Computador/métodos , Exercício Físico/fisiologia , Osteoartrite do Joelho/diagnóstico , Osteoartrite do Joelho/reabilitação , Medição da Dor/métodos , Idoso , Diagnóstico por Computador/normas , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Osteoartrite do Joelho/fisiopatologia , Medição da Dor/normasRESUMO
AIM: The present study examined the Patient Reported Outcomes Measurement Information System (PROMIS) Mobility, Fatigue, and Pain Interference Short Forms (SFs) in children and adolescents with cerebral palsy (CP) for the presence of differential item functioning (DIF) relative to the original calibration sample. METHOD: Using the Graded Response Model we compared item parameter estimates generated from a sample of 303 children and adolescents with CP (175 males, 128 females; mean age 15y 5mo) to parameter estimates from the PROMIS calibration sample, which served as the reference group. DIF was assessed in a two-step process using the item response theory-likelihood ratio-differential item functioning detection procedure. RESULTS: Significant DIF was identified for four of eight items in the PROMIS Mobility SF, for two of eight items in the Pain Interference Scale, and for one item out of 10 on the Fatigue Scale. Impact of DIF on total score estimation was notable for Mobility and Pain Interference, but not for Fatigue. INTERPRETATION: Results suggest differences in the responses of adolescents with CP to some items on the PROMIS Mobility and Pain Interference SFs. Cognitive interviews about the PROMIS items with adolescents with varying degrees of mobility limitations would provide better understanding of how they are interpreting and selecting responses to the PROMIS items and thus help guide selection of the most appropriate way to address this issue.
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Paralisia Cerebral/complicações , Fadiga/etiologia , Limitação da Mobilidade , Avaliação de Resultados em Cuidados de Saúde/normas , Dor/etiologia , Medidas de Resultados Relatados pelo Paciente , Adolescente , Criança , Feminino , Humanos , Masculino , Aplicações da Informática Médica , Avaliação de Resultados em Cuidados de Saúde/métodos , Pediatria , Psicometria/instrumentaçãoRESUMO
OBJECTIVES: To evaluate the psychometric properties of the Spinal Cord Injury-Functional Index/Assistive Technology (SCI-FI/AT) short forms (SFs) in the domains of basic mobility, self-care, fine motor function, and ambulation based on internal consistency; correlations between SFs and full item banks, and a 10-item computerized adaptive test (CAT) version; magnitude of ceiling and floor effects; and measurement precision across a broad range of function in a sample of adults with spinal cord injury (SCI). DESIGN: Cross-sectional cohort study. SETTING: Nine national Spinal Cord Injury Model Systems programs. PARTICIPANTS: A sample of adults with traumatic SCI (N=460) stratified by level of injury (paraplegia/tetraplegia), completeness of injury, and time since SCI. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: SCI-FI/AT full item bank, 10-item CAT, and SFs (with separate Self-Care and Fine Motor Function SFs for persons with tetraplegia and paraplegia). RESULTS: The SCI-FI/AT SFs demonstrated very good internal consistency, group-level reliability, and excellent correlations between SFs and scores based on the CAT version and the total item bank. Ceiling and floor effects are acceptable (except for unacceptable ceiling effects for persons with paraplegia on the Self-Care and Fine Motor Function SFs). The test information functions are excellent across a broad range of functioning typical of persons with paraplegia and tetraplegia. CONCLUSIONS: Clinicians and researchers should consider using the SCI-FI/AT SFs to assess functioning with the use of assistive technology when CAT applications are not available.
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Avaliação da Deficiência , Modalidades de Fisioterapia , Tecnologia Assistiva , Traumatismos da Medula Espinal/reabilitação , Inquéritos e Questionários/normas , Atividades Cotidianas , Adulto , Estudos Transversais , Feminino , Hemiplegia/reabilitação , Humanos , Masculino , Pessoa de Meia-Idade , Paraplegia/reabilitação , Psicometria , Reprodutibilidade dos Testes , Autocuidado , Fatores Socioeconômicos , Traumatismos da Medula Espinal/classificação , Traumatismos da Medula Espinal/psicologia , Índices de Gravidade do Trauma , CaminhadaRESUMO
BACKGROUND: The Patient Reported Outcomes Measurement Information System (PROMIS) was developed to provide patient-reported outcome measures that are designed as being universally relevant across health conditions, low burden, and precise. A major problem for research and clinical practice in cerebral palsy (CP) is the void of outcomes instruments that are capable of evaluating the wide range of abilities and broad age spectrum inherent in this clinical population. Given the tremendous potential of PROMIS, the research questions for this study were "How do PROMIS pediatric computer adaptive tests and short forms detect change in children with CP following elective musculoskeletal surgery?" and "How do PROMIS instruments compare to the Pediatric Quality of Life Inventory Cerebral Palsy Module Version 3.0 (PedsQL CP), Pediatric Outcomes Data Collection Instrument (PODCI), the Timed Up and Go (TUG), and the Gross Motor Functional Measure (GMFM)." METHODS: PROMIS Pediatric computer adaptive tests and short forms and the PedsQL, PODCI, TUG, and GMFM were administered before and after surgery. Effect size (ES) and standardized response mean (SRM) were calculated. Floor and ceiling effects were evaluated and, exposure rates for the PROMIS item banks were examined. RESULTS: ES and SRM for all PROMIS Pediatric Measures were nonsignificant. PedsQL CP detected significant, positive change in mobility at 6 (ES=0.26; SRM=0.31) and 12 (ES=0.36; SRM=0.36) months; pain at 12 months (ES=0.29; SRM=0.34); and fatigue at 6 (ES=0.24; SRM=0.22) and 12 (ES=0.36; SRM=0.41) months. Significant negative changes were detected by the PODCI (ES=-0.20; SRM=-0.26), GMFM (ES=-0.13; SRM=-0.24), and TUG (ES=-0.29; SRM=-0.25). Ceiling effects were high. Exposure to an appropriate range of the PROMIS Mobility item bank was limited. CONCLUSIONS: PROMIS measures were less able to detect change than other measures. PROMIS measures may be improved by tailoring start/stop rules or by adding items to include content appropriate for children with mobility impairments. LEVEL OF EVIDENCE: Level III-diagnostic study.
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Paralisia Cerebral , Efeitos Psicossociais da Doença , Ortopedia , Avaliação de Resultados em Cuidados de Saúde , Qualidade de Vida , Adolescente , Paralisia Cerebral/diagnóstico , Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/psicologia , Criança , Feminino , Humanos , Masculino , Ortopedia/métodos , Ortopedia/estatística & dados numéricos , Avaliação de Resultados em Cuidados de Saúde/métodos , Avaliação de Resultados em Cuidados de Saúde/normas , Pediatria/métodos , Pediatria/normas , Cuidados Pré-Operatórios/métodos , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVES: To develop functional ability levels for the Spinal Cord Injury Functional Index (SCI-FI) and to validate them using calibration and reliability samples. DESIGN: Three-phase strategy involved (1) performing quantitative synthesis of SCI-FI data to create item maps; (2) using a panel of experts to identify functional ability levels after the bookmarking and Delphi consensus-building process; and (3) performing quantitative analyses to examine demographic characteristics across 2 samples, assessing the distribution pattern across functional ability levels, and examining concurrent validity using the self-reported functional measure and the observer-rated FIM. SETTING: Inpatient and community settings. PARTICIPANTS: People 18 years or older with traumatic spinal cord injury (N=1124) were recruited from the Spinal Cord Injury Model Systems programs and stratified by diagnosis, severity, and time since injury (n=855 and n=269 for calibration and reliability samples, respectively). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: SCI-FI. RESULTS: Five functional ability levels were identified for all SCI-FI domains, except fine motor having 4 functional ability levels. Statistical test results indicated no significant differences in the distribution pattern across the 2 samples across functional ability levels for all domains except for ambulation. Known-group comparisons were able to discern the spinal cord injury population as expected. Basic mobility, self-care, and wheelchair mobility domains had a cluster of persons with paraplegia and incomplete lesions at higher functional ability levels and persons with tetraplegia and complete lesions at lower functional ability levels. For the ambulation domain, the distribution was skewed to the lower end, with a relatively small percentage of persons with incomplete lesions (paraplegia and tetraplegia) at higher functional ability levels. For the fine motor domain, the distribution was skewed to higher functional ability levels, with a high percentage of persons with paraplegia at the highest level (complete and incomplete lesions). Concurrent validity analyses revealed SCI-FI functional levels to be significantly (P<.001) positively correlated with both the self-reported functional measure and the observer-rated FIM. CONCLUSIONS: Clinicians can use functional ability levels to discuss patients' functional capabilities with them and their family.
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Avaliação da Deficiência , Paralisia/reabilitação , Modalidades de Fisioterapia , Recuperação de Função Fisiológica , Traumatismos da Medula Espinal/reabilitação , Atividades Cotidianas , Adulto , Feminino , Humanos , Tempo de Internação , Masculino , Pessoa de Meia-Idade , Limitação da Mobilidade , Destreza Motora , Paralisia/etiologia , Reprodutibilidade dos Testes , Autocuidado , Fatores Socioeconômicos , Traumatismos da Medula Espinal/complicações , Índices de Gravidade do Trauma , Cadeiras de RodasRESUMO
OBJECTIVES: To describe the domain structure and calibration of the Spinal Cord Injury Functional Index for samples using Assistive Technology (SCI-FI/AT) and report the initial psychometric properties of each domain. DESIGN: Cross sectional survey followed by computerized adaptive test (CAT) simulations. SETTING: Inpatient and community settings. PARTICIPANTS: A sample of 460 adults with traumatic spinal cord injury (SCI) stratified by level of injury, completeness of injury, and time since injury. INTERVENTIONS: None MAIN OUTCOME MEASURE: SCI-FI/AT RESULTS: Confirmatory factor analysis (CFA) and Item response theory (IRT) analyses identified 4 unidimensional SCI-FI/AT domains: Basic Mobility (41 items) Self-care (71 items), Fine Motor Function (35 items), and Ambulation (29 items). High correlations of full item banks with 10-item simulated CATs indicated high accuracy of each CAT in estimating a person's function, and there was high measurement reliability for the simulated CAT scales compared with the full item bank. SCI-FI/AT item difficulties in the domains of Self-care, Fine Motor Function, and Ambulation were less difficult than the same items in the original SCI-FI item banks. CONCLUSION: With the development of the SCI-FI/AT, clinicians and investigators have available multidimensional assessment scales that evaluate function for users of AT to complement the scales available in the original SCI-FI.
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Movimento , Qualidade de Vida , Traumatismos da Medula Espinal/reabilitação , Índices de Gravidade do Trauma , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Traumatismos da Medula Espinal/classificação , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: To build an item response theory-based computer adaptive test (CAT) for balance from 3 traditional, fixed-form balance measures: Berg Balance Scale (BBS), Performance-Oriented Mobility Assessment (POMA), and dynamic gait index (DGI); and to examine whether the CAT's psychometric performance exceeded that of individual measures. DESIGN: Secondary analysis combining 2 existing datasets. SETTING: Community based. PARTICIPANTS: Community-dwelling older adults (N=187) who were aged ≥65 years (mean age, 75.2±6.8y, 69% women). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The BBS, POMA, and DGI items were compiled into an initial 38-item bank. The Rasch partial credit model was used for final item bank calibration. CAT simulations were conducted to identify the ideal CAT. CAT score accuracy, reliability, floor and ceiling effects, and validity were examined. Floor and ceiling effects and validity of the CAT and individual measures were compared. RESULTS: A 23-item bank met model expectations. A 10-item CAT was selected, showing a very strong association with full item bank scores (r=.97) and good overall reliability (.78). Reliability was better in low- to midbalance ranges as a result of better item targeting to balance ability when compared with the highest balance ranges. No floor effect was noted. The CAT ceiling effect (11.2%) was significantly lower than the POMA (40.1%) and DGI (40.3%) ceiling effects (P<.001 per comparison). The CAT outperformed individual measures, being the only test to discriminate between fallers and nonfallers (P=.007), and being the strongest predictor of self-reported function. CONCLUSIONS: The balance CAT showed excellent accuracy, good overall reliability, and excellent validity compared with individual measures, being the only measure to discriminate between fallers and nonfallers. Prospective examination, particularly in low-functioning older adults and clinical populations with balance deficits, is recommended. Development of an improved CAT based on an expanded item bank containing higher difficulty items is also recommended.
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Acidentes por Quedas/prevenção & controle , Computadores , Avaliação Geriátrica/métodos , Equilíbrio Postural , Idoso , Idoso de 80 Anos ou mais , Avaliação da Deficiência , Feminino , Humanos , Masculino , Modalidades de Fisioterapia , Reprodutibilidade dos TestesRESUMO
ABSTRACT: Trauma centers demonstrate an impressive ability to save lives, as reflected by inpatient survival rates of over 95% in the United States. Nevertheless, we fail to allocate sufficient effort and resources to ensure that survivors and their families receive the necessary care and support after leaving the trauma center. The objective of this scoping review is to systematically map the research on collaborative care models (CCM) that have been put forward to improve trauma survivorship. Of 833 articles screened, we included 16 studies evaluating eight collaborative care programs, predominantly in the U.S. The majority of the programs offered care coordination and averaged 9-months in duration. Three-fourths of the programs incorporated a mental health provider within their primary team. Observed outcomes were diverse: some models showed increased engagement (e.g., Center for Trauma Survivorship, trauma quality-of-life follow-up clinic), while others presented mixed mental health outcomes and varied results on pain and healthcare utilization. The findings of this study indicate that collaborative interventions may be effective in mental health screening, PTSD and depression management, effective referrals, and improving patient satisfaction with care. A consensus on core elements and cost-effectiveness of CCMs is necessary to set the standard for comprehensive care in post-trauma recovery.
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Burn survivors can experience social participation challenges throughout their recovery. The aim of this study was to develop a novel Australian English translation of the Life Impact Burn Recovery Evaluation (LIBRE) Profile, the Aus-LIBRE Profile. This study consisted of three stages: 1) translation of the LIBRE Profile from American to Australian English by Australian researchers/burns clinicians; 2) piloting and cognitive evaluation of the Aus-LIBRE Profile with burn survivors to assess the clarity and consistency of the interpretation of each individual item, and 3) review of the Aus-LIBRE Profile by colleagues who identify as Aboriginal Australians for cross-cultural validation. In stage 2, investigators administered the translated questionnaire to 20 Australian patients with burn injuries in the outpatient clinic (10 patients from xx and 10 patients from yy). Face validity of the Aus-LIBRE Profile was tested in 20 burns survivors (11 females) ranging from 21 to 74 years (median age 43 years). The total body surface area (TBSA) burned ranged from 1% to 50% (median 10%). Twelve language changes were made based on the feedback from the burn clinicians/researchers, study participants and colleagues who identify as Aboriginal Australians. Using a formal translation process, the Aus-LIBRE Profile was adapted for use in the Australian burn population. The Aus-LIBRE Profile will require psychometric validation and testing in the Australian burn patient population before broader application of the scale.
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PURPOSE: The Patient-Reported Outcomes Measurement Information System (PROMIS(®)) provides adult and pediatric self-report measures of health-related quality of life designed for use across medical conditions and the general population. The purpose of this study was to examine the feasibility and validity of the PROMIS(®) Pediatric Short Form and computer-adaptive test (CAT) mobility measures in children with cerebral palsy (CP). METHODS: Eighty-two children with CP completed self-report (PROMIS(®) Mobility Short Form, PROMIS(®) Mobility CAT, Pediatric Quality of Life Inventory™) and performance-based assessments of mobility (Timed Up and Go, Gross Motor Function Measure). Parents provided three proxy reports of child mobility (Pediatric Outcomes Data Collection Instrument, Functional Assessment Questionnaire, Shriners Hospitals for Children CP-CAT). Validity of PROMIS(®) instruments was examined through correlations with other measures and "known groups" analyses determined by Gross Motor Function Classification System (GMFCS). RESULTS: On average, the PROMIS(®) CAT required less than seven items and 2 minutes to administer. Both PROMIS(®) measures showed moderate to high correlations with child- and parent-proxy report of child mobility; correlations with performance-based measure were small for the PROMIS(®) Short Form and non-significant for the PROMIS(®) CAT. All measures except for the PROMIS(®) CAT were able to distinguish between GMFCS categories. CONCLUSIONS: Results support the convergent and discriminant validity of the pediatric PROMIS(®) Mobility Short Form in children with CP. The PROMIS(®) Mobility CAT correlates well with child report and parent report of mobility but not with performance-based measures and does not differentiate between known mobility groups.
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Paralisia Cerebral/psicologia , Indicadores Básicos de Saúde , Avaliação de Resultados da Assistência ao Paciente , Satisfação do Paciente , Qualidade de Vida/psicologia , Inquéritos e Questionários , Adulto , Cuidadores/psicologia , Criança , Pré-Escolar , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pais/psicologia , Pediatria , Procurador/psicologia , Psicometria/instrumentação , Reprodutibilidade dos Testes , Autorrelato , Perfil de Impacto da Doença , Adulto JovemRESUMO
INTRODUCTION: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multisystem chronic disease estimated to affect 836,000-2.5 million individuals in the United States. Persons with ME/CFS have a substantial reduction in their ability to engage in pre-illness levels of activity. Multiple symptoms include profound fatigue, post-exertional malaise, unrefreshing sleep, cognitive impairment, orthostatic intolerance, pain, and other symptoms persisting for more than 6 months. Diagnosis is challenging due to fluctuating and complex symptoms. ME/CFS Common Data Elements (CDEs) were identified in the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) Common Data Element Repository. This study reviewed ME/CFS CDEs item content. METHODS: Inclusion criteria for CDEs (measures recommended for ME/CFS) analysis: 1) assesses symptoms; 2) developed for adults; 3) appropriate for patient reported outcome measure (PROM); 4) does not use visual or pictographic responses. Team members independently reviewed CDEs item content using the World Health Organization International Classification of Functioning, Disability and Health (ICF) framework to link meaningful concepts. RESULTS: 119 ME/CFS CDEs (measures) were reviewed and 38 met inclusion criteria, yielding 944 items linked to 1503 ICF meaningful concepts. Most concepts linked to ICF Body Functions component (b-codes; n = 1107, 73.65%) as follows: Fatiguability (n = 220, 14.64%), Energy Level (n = 166, 11.04%), Sleep Functions (n = 137, 9.12%), Emotional Functions (n = 131, 8.72%) and Pain (n = 120, 7.98%). Activities and Participation concepts (d codes) accounted for a smaller percentage of codes (n = 385, 25.62%). Most d codes were linked to the Mobility category (n = 69, 4.59%) and few items linked to Environmental Factors (e codes; n = 11, 0.73%). DISCUSSION: Relatively few items assess the impact of ME/CFS symptoms on Activities and Participation. Findings support development of ME/CFS-specific PROMs, including items that assess activity limitations and participation restrictions. Development of psychometrically-sound, symptom-based item banks administered as computerized adaptive tests can provide robust assessments to assist primary care providers in the diagnosis and care of patients with ME/CFS.