Dynamics of Perceived Social Isolation, Secondary Conditions, and Daily Activity Patterns Among Individuals With Stroke: A Network Analysis of Ecological Momentary Assessment Data.

OBJECTIVE: To assess contemporaneous and temporal dynamics of perceived social isolation (PSI), secondary conditions, and daily activity patterns in individuals post-stroke. DESIGN: Longitudinal observational study using ecological momentary assessment (EMA) as a real-time assessment of an individual's lived experiences. We conducted dynamic network analyses to examine longitudinal associations among EMA variables. SETTINGS: Home and Community. PARTICIPANTS: 202 individuals with mild-to-moderate chronic stroke (median age=60 years; 45% women; 44% black; 90% ischemic stroke; median NIHSS score=2; N=202). INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: EMA questions measured PSI, secondary conditions (pain, tiredness, stress, anxiety, worthlessness, difficulty concentrating, and cheerfulness), and daily activity patterns (being at home, being alone, and participating in productive activities). RESULTS: The median EMA response rate was 84%. The contemporaneous model showed that PSI was associated with being home, alone, and all symptoms except pain. The temporal model revealed a pathway indicating that feelings of worthlessness predicted PSI (regression coefficient=0.06, P=.019), followed by stress (regression coefficient=0.06, P=.024), and then by being not at home (regression coefficient=-0.04, P=.013). CONCLUSION: Implementing dynamic network analyses on EMA data can uncover dynamic connections among PSI, secondary conditions, and daily activity patterns after stroke. This study found a significant temporal association between PSI and negative emotions. Feeling isolated was followed by feeling stressed, which was followed by a tendency to be out of home, indicating adaptive behaviors in individuals with stroke. These findings highlight the importance of engaging in out-of-home or outdoor activities to mitigate PSI and negative emotions.

Post-stroke Depressive Symptoms and Cognitive Performances: A Network Analysis.

OBJECTIVE: To examine the relationships between post-stroke depression and cognition using network analysis. In particular, we identified central depressive symptoms, central cognitive performances, and bridge components that connect these 2 constructs. DESIGN: An observational study. We applied network analysis to analyze baseline data to visualize and quantify the relationships between depression and cognition. SETTING: Home and Community. PARTICIPANTS: 202 participants with mild-to-moderate stroke (N=202; mean age: 59.7 years; 55% men; 55% Whites; 90% ischemic stroke). INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Patient Health Questionnaire (PHQ-8) for depressive symptoms and the NIH Toolbox Cognitive Battery for cognitive performances. RESULTS: Depressive symptoms were positively intercorrelated with the network, with symptoms from similar domains clustered together. Mood (expected influence=1.58), concentration (expected influence=0.67), and guilt (expected influence=0.63) were the top 3 central depressive symptoms. Cognitive performances also showed similar network patterns, with executive function (expected influence=0.89), expressive language (expected influence=0.68), and processing speed (expected influence=0.48) identified as the top 3 central cognitive performances. Psychomotor functioning (bridge expected influence=2.49) and attention (bridge expected influence=1.10) were the components connecting depression and cognition. CONCLUSIONS: The central and bridge components identified in this study might serve as targets for interventions against these deficits. Future trials are needed to compare the effectiveness of interventions targeting the central and bridge components vs general interventions treating depression and cognitive impairment as a homogenous clinical syndrome.

Using Implementation Science to Guide the Process of Adapting a Patient Engagement Intervention for Inpatient Spinal Cord Injury/Disorder Rehabilitation.

OBJECTIVES: This study aimed to describe the process of adapting an evidence-based patient engagement intervention, enhanced medical rehabilitation (E-MR), for inpatient spinal cord injury/disease (SCI/D) rehabilitation using an implementation science framework. DESIGN: We applied the collaborative intervention planning framework and included a community advisory board (CAB) in an intervention mapping process. SETTING: A rehabilitation hospital. PARTICIPANTS: Stakeholders from inpatient SCI/D rehabilitation (N=7) serving as a CAB and working with the research team (N=7) to co-adapt E-MR. INTERVENTIONS: E-MR. MAIN OUTCOME MEASURES: Logic model and matrices of change used in CAB meetings to identify areas of intervention adaptation. RESULTS: The CAB and research team implemented adaptations to E-MR, including (1) identifying factors influencing patient engagement in SCI/D rehabilitation (eg, therapist training); (2) revising intervention materials to meet SCI/D rehabilitation needs (eg, modified personal goals interview and therapy trackers to match SCI needs); (3) incorporating E-MR into the rehabilitation hospital's operations (eg, research team coordinated with CAB to store therapy trackers in the hospital system); and (4) retaining fidelity to the original intervention while best meeting the needs of SCI/D rehabilitation (eg, maintained core E-MR principles while adapting). CONCLUSIONS: This study demonstrated that structured processes guided by an implementation science framework can help researchers and clinicians identify adaptation targets and modify the E-MR program for inpatient SCI/D rehabilitation.

Ecological Momentary Assessment of Real-World Functional Behaviors in Individuals With Stroke: A Longitudinal Observational Study.

OBJECTIVE: To validate and characterize real-world functional behaviors in individuals after stroke. DESIGN: Longitudinal observational study using ecological momentary assessment (EMA) as a real-time assessment of functional behaviors in natural contexts. Wilcoxon rank-sum tests, Fisher exact tests, and Spearman correlations were used to analyze data. SETTING: Community. PARTICIPANTS: Individuals with mild to moderate stroke (N=212). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Individuals were assessed 5 times daily for 14 days with EMA surveys to determine what, with whom, and where individuals were doing activities and appraise mental, somatic, and cognitive symptoms. Individuals also completed standardized assessments during laboratory visits, including Lawton Instrumental Activities of Daily Living Scale, Activity Card Sort, Patient-Reported Outcome Measurement Information System, and Quality of Life in Neurological Disorders. RESULTS: Most individuals (median age, 60 years; 55% male) were ischemic stroke (90%) and had mild stroke severity (median National Institutes of Health Stroke Scale, 2). A total of 14,140 EMA surveys were analyzed. Individuals were home 78% of the time; primarily participated in passive, unproductive activities (27%), especially watching television and resting; and participated least in physical activities (4%). EMA was sensitive to indicators of poststroke disability; unemployed individuals reported fewer vocational activities but more activities of daily living (ADL) and passive activities than employed counterparts. Users of mobility devices and individuals with cognitive problems spent significantly less time on vocational activities and more on ADL than nonusers and those without cognitive problems. Our data supported the validity of EMA methods in stroke, with small to moderate correlations of EMA with in-laboratory measures of daily functioning (r=-0.30 to 0.35, P<.05) and very large correlations between EMA and in-laboratory measures of symptoms, especially those measuring same constructs (r=-0.64 to 0.79, P<.0001). CONCLUSIONS: Our findings reveal that EMA tracked poststroke functioning precisely. EMA may be beneficial in examining poststroke functional recovery, in monitoring patients for home-based interventions, and for longitudinal research.

Theory-Based Self-Management Interventions for Community-Dwelling Stroke Survivors: A Systematic Review and Meta-Analysis.

IMPORTANCE: Self-management is a critical component of stroke rehabilitation. A better understanding of the use of theory and behavior change techniques (BCTs) informs the development of more effective stroke self-management interventions. OBJECTIVE: To examine what theories and BCTs have been applied in stroke self-management interventions; investigate the extent to which these interventions encourage implementation of behavior changes; and appraise their effectiveness to enhance self-efficacy, quality of life, and functional independence. DATA SOURCES: Ovid MEDLINE, Embase, Scopus, CINAHL, Cochrane Library, and ClinicalTrials.gov were searched from inception to May 26, 2020. STUDY SELECTION AND DATA COLLECTION: Randomized controlled trials (RCTs) in six databases were reviewed for inclusion and analysis. We included trials that involved community-dwelling adult stroke survivors, assessed the effectiveness of self-management interventions, and explicitly mentioned the use of theory in the development of the intervention. We assessed use of theory and BCTs using the Theory Coding Scheme and BCT taxonomy v1, respectively. FINDINGS: A total of 3,049 studies were screened, and 13 RCTs were included. The predominant theory and BCT categories were Social Cognitive Theory (7 studies) and goals and planning (12 studies), respectively. Significant and small effect sizes were found for self-efficacy (0.27) and functional independence (0.19). CONCLUSIONS AND RELEVANCE: Theory-based self-management interventions have the potential to enhance stroke outcomes. Systematic reporting on the use of theory and BCTs is recommended to enhance clarity and facilitate evaluations of future interventions. What This Article Adds: This review supports and guides occupational therapy practitioners to use theory-based self-management intervention as a routine part of stroke rehabilitation to improve stroke survivors' experience in the community.

Fronto-cerebellar connectivity mediating cognitive processing speed.

Processing speed is an important construct in understanding cognition. This study was aimed to control task specificity for understanding the neural mechanisms underlying cognitive processing speed. Forty young adult subjects performed attention tasks of two modalities (auditory and visual) and two levels of task rules (compatible and incompatible). Block-design fMRI captured BOLD signals during the tasks. Thirteen regions of interest were defined with reference to publicly available activation maps for processing speed tasks. Cognitive speed was derived from task reaction times, which yielded six sets of connectivity measures. Mixed-effect LASSO regression revealed six significant paths suggestive of a cerebello-frontal network predicting the cognitive speed. Among them, three are long range (two fronto-cerebellar, one cerebello-frontal), and three are short range (fronto-frontal, cerebello-cerebellar, and cerebello-thalamic). The long-range connections are likely to relate to cognitive control, and the short-range connections relate to rule-based stimulus-response processes. The revealed neural network suggests that automaticity, acting on the task rules and interplaying with effortful top-down attentional control, accounts for cognitive speed.

Precision clinical trials: a framework for getting to precision medicine for neurobehavioural disorders.

The goal of precision medicine (individually tailored treatments) is not being achieved for neurobehavioural conditions such as psychiatric disorders. Traditional randomized clinical trial methods are insufficient for advancing precision medicine because of the dynamic complexity of these conditions. We present a pragmatic solution: the precision clinical trial framework, encompassing methods for individually tailored treatments. This framework includes the following: (1) treatment-targeted enrichment, which involves measuring patients' response after a brief bout of an intervention, and then randomizing patients to a full course of treatment, using the acute response to predict long-term outcomes; (2) adaptive treatments, which involve adjusting treatment parameters during the trial to individually optimize the treatment; and (3) precise measurement, which involves measuring predictor and outcome variables with high accuracy and reliability using techniques such as ecological momentary assessment. This review summarizes precision clinical trials and provides a research agenda, including new biomarkers such as precision neuroimaging, transcranial magnetic stimulation-electroencephalogram digital phenotyping and advances in statistical and machine-learning models. Validation of these approaches - and then widespread incorporation of the precision clinical trial framework - could help achieve the vision of precision medicine for neurobehavioural conditions.

Ecological Momentary Assessment of Social Interactions: Associations With Depression, Anxiety, Pain, and Fatigue in Individuals With Mild Stroke.

OBJECTIVES: To examine real-time relationships between social interactions and poststroke mood and somatic symptoms in participants' daily environments. DESIGN: Prospective observational study using smartphone-based ecological momentary assessment (EMA) surveys 5 times a day for 2 weeks. Multilevel models were used to analyze data for concurrent and lagged associations. SETTING: Community. PARTICIPANTS: Adults (N=48) with mild stroke. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: EMA measures of self-appraisal of social interactions (confidence, satisfaction, and success), as well as mood (depression and anxiety) and somatic (pain and fatigue) symptoms. RESULTS: In concurrent associations, increased depressed mood was associated with reduced ratings of all aspects of social interactions. Fatigue was associated with reduced ratings of social satisfaction and success. In lagged associations, increased anxious mood preceded increased subsequent social confidence. Higher average social satisfaction, confidence, and success were related to lower momentary fatigue, anxious mood, and depressed mood at the next time point. Regarding clinicodemographic factors, being employed was concurrently related to increased social interactions. An increased number of comorbidities predicted higher somatic, but not mood, symptoms at the next time point. CONCLUSIONS: This study provides preliminary evidence of dynamic relationships between social interactions and somatic and mood symptoms in individuals with mild stroke. Interventions to not only address the sequelae of symptoms, but also to promote participation in social activities in poststroke life should be explored.

Rasch Analysis of Social Attitude Barriers and Facilitators to Participation for Individuals with Disabilities.

OBJECTIVES: To develop item banks of social attitude barriers and facilitators to participation and validate them with established instruments. DESIGN: We used the Rasch model to identify misfitting items and rating scale problems, calibrate items, and develop KeyForms and short forms. Correlations between the Social Attitude Barriers and Facilitators item banks with the Patient-Reported Outcomes Measurement Information System (PROMIS) Social Health domain and National Institutes of Health Toolbox Emotional Battery Social Relationships domain were computed to evaluate convergent and divergent validity. SETTING: Community-dwelling individuals traveled to 3 academic medical centers for testing. PARTICIPANTS: Participants (N=558) who had a primary impairment of stroke, spinal cord injury, or traumatic brain injury (mean age, 47.0±16.0y) completed 31 social attitude facilitator and 51 barrier items using a 5-point rating scale. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Item banks to measure social attitude barriers and facilitators for individuals with disabilities. RESULTS: After combining the "never" and "rarely" rating scale categories, 30 Facilitator items fit the Rasch model and demonstrated person reliability of 0.93. After collapsing the "never" and "rarely" rating scale categories, 45 Barrier items fit the Rasch model and demonstrated person reliability of 0.95. Ceiling and floor effects were negligible for both item banks. Facilitators and Barriers item banks were negatively correlated, and these banks were moderately correlated with PROMIS and Toolbox measures, providing evidence of convergent and divergent validity. CONCLUSIONS: Findings support the reliability and validity of the Social Attitude Facilitators and Barriers item banks. These item banks allow investigators and clinicians to measure perceptions of social attitudes, providing information that can guide individual interventions to reduce barriers and promote facilitators. Moderate correlations between the Social Attitude banks and PROMIS and Toolbox variables provide support for the measurement and theory of environmental influences on social health and participation.

Stroke Factors Associated with Thrombolysis Use in Hospitals in Singapore and US: A Cross-Registry Comparative Study.

BACKGROUND AND OBJECTIVES: This paper aims to describe and compare the characteristics of 2 stroke populations in Singapore and in St. Louis, USA, and to document thrombolysis rates and contrast factors associated with its uptake in both populations. METHODS: The stroke populations described were from the Singapore Stroke Registry (SSR) in -Singapore and the Cognitive Rehabilitation Research Group Stroke Registry (CRRGSR) in St. Louis, MO, USA. The registries were compared in terms of demographics and stroke risk factor history. Logistic regression was used to determine factors associated with thrombolysis uptake. RESULTS: A total of 39,323 and 8,106 episodes were recorded in SSR and CRRGSR, respectively, from 2005 to 2012. Compared to CRRGSR, patients in SSR were older, male, and from the ethnic majority. Thrombolysis rates in SSR and CRRGSR were 2.5 and 8.2%, respectively, for the study period. History of ischemic heart disease or atrial fibrillation was associated with increased uptake in both populations, while history of stroke was associated with lower uptake. For SSR, younger age and males were associated with increased uptake, while having a history of smoking or diabetes was associated with decreased uptake. For CRRGSR, ethnic minority status was associated with decreased uptake. CONCLUSIONS: The comparison of stroke populations in Singapore and St Louis revealed distinct differences in clinicodemographics of the 2 groups. Thrombolysis uptake was driven by nonethnicity demographics in Singapore. Ethnicity was the only demographic driver of uptake in the CRRGSR population, highlighting the need to target ethnic minorities in increasing access to thrombolysis.

Cognitive, Emotional, and Physical Functioning as Predictors of Paid Employment in People With Stroke, Traumatic Brain Injury, and Spinal Cord Injury.

OBJECTIVE: Our objective was to examine demographic, cognitive, emotional, and physical factors that predict return to paid employment for people after neurological injury. METHOD: Four hundred eighty adults with stroke (n = 149), traumatic brain injury (n = 155), and spinal cord injury (n = 176) completed an occupational outcome questionnaire and physical, emotional, and cognitive assessments at three rehabilitation facilities. RESULTS: Odds of employment were predicted by being married or partnered, having more education, requiring fewer prompts for task sequencing, and having higher inhibitory control (but were not predicted by specific type of injury). Participants who returned to work within 3 mo were more likely to work with the same employer and to take a full-time position than those who returned later. CONCLUSION: Executive functioning, in particular sequencing and inhibitory control, strongly predicts employment and highlights the importance of cognitive strategy training during occupational therapy with people who have sustained neurological injuries.

Conceptual Underpinnings of the Quality of Life in Neurological Disorders (Neuro-QoL): Comparisons of Core Sets for Stroke, Multiple Sclerosis, Spinal Cord Injury, and Traumatic Brain Injury.

OBJECTIVE: To determine the extent to which the content of the Quality of Life in Neurological Disorders (Neuro-QoL) covers the International Classification of Functioning, Disability and Health (ICF) Core Sets for multiple sclerosis (MS), stroke, spinal cord injury (SCI), and traumatic brain injury (TBI) using summary linkage indicators. DESIGN: Content analysis by linking content of the Neuro-QoL to corresponding ICF codes of each Core Set for MS, stroke, SCI, and TBI. SETTING: Three academic centers. PARTICIPANTS: None. INTERVENTIONS: None. MAIN OUTCOME MEASURES: Four summary linkage indicators proposed by MacDermid et al were estimated to compare the content coverage between Neuro-QoL and the ICF codes of Core Sets for MS, stroke, MS, and TBI. RESULTS: Neuro-QoL represented 20% to 30% Core Set codes for different conditions in which more codes in Core Sets for MS (29%), stroke (28%), and TBI (28%) were covered than those for SCI in the long-term (20%) and early postacute (19%) contexts. Neuro-QoL represented nearly half of the unique Activity and Participation codes (43%-49%) and less than one third of the unique Body Function codes (12%-32%). It represented fewer Environmental Factors codes (2%-6%) and no Body Structures codes. Absolute linkage indicators found that at least 60% of Neuro-QoL items were linked to Core Set codes (63%-95%), but many items covered the same codes as revealed by unique linkage indicators (7%-13%), suggesting high concept redundancy among items. CONCLUSIONS: The Neuro-QoL links more closely to ICF Core Sets for stroke, MS, and TBI than to those for SCI, and primarily covers activity and participation ICF domains. Other instruments are needed to address concepts not measured by the Neuro-QoL when a comprehensive health assessment is needed.

Simplified Chinese translation of 13 adult item banks from the Quality of Life in Neurological Disorders (Neuro-QoL).

BACKGROUND: The Quality of Life in Neurological Disorders (Neuro-QoL) item banks evaluate and monitor the physical, mental, and social health of individuals with neurological conditions. Neuro-QoL items can be administered via short form or computerized adaptive testing. This paper describes the English-to-Simplified Chinese translation of 299 items from 13 adult item banks, which are publicly available. METHODS: Items were translated according to the Functional Assessment of Chronic Illness Therapy (FACIT) method, including forward and backward translation, reconciliation, expert reviews, and cognitive debriefing with both general and clinical populations in China. RESULTS: Most of the 299 Simplified Chinese items were well understood by the respondents. Revisions were made on a small number of items after cognitive debriefing. Although some difficulties were encountered in the translation process, all 13 item banks were linguistically validated with acceptable translations. CONCLUSION: All Chinese adult Neuro-QoL measures are linguistically equivalent to their English sources. Future work includes psychometric validation of these measures in order to create a final version of the item banks. The translation methodology used in this study can serve as a blueprint for researchers in other countries interested in translating the Neuro-QoL.

Racial Differences in Neurocognitive Outcomes Post-Stroke: The Impact of Healthcare Variables.

OBJECTIVES: The present study examined differences in neurocognitive outcomes among non-Hispanic Black and White stroke survivors using the NIH Toolbox-Cognition Battery (NIHTB-CB), and investigated the roles of healthcare variables in explaining racial differences in neurocognitive outcomes post-stroke. METHODS: One-hundred seventy adults (91 Black; 79 White), who participated in a multisite study were included (age: M=56.4; SD=12.6; education: M=13.7; SD=2.5; 50% male; years post-stroke: 1-18; stroke type: 72% ischemic, 28% hemorrhagic). Neurocognitive function was assessed with the NIHTB-CB, using demographically corrected norms. Participants completed measures of socio-demographic characteristics, health literacy, and healthcare use and access. Stroke severity was assessed with the Modified Rankin Scale. RESULTS: An independent samples t test indicated Blacks showed more neurocognitive impairment (NIHTB-CB Fluid Composite T-score: M=37.63; SD=11.67) than Whites (Fluid T-score: M=42.59, SD=11.54; p=.006). This difference remained significant after adjusting for reading level (NIHTB-CB Oral Reading), and when stratified by stroke severity. Blacks also scored lower on health literacy, reported differences in insurance type, and reported decreased confidence in the doctors treating them. Multivariable models adjusting for reading level and injury severity showed that health literacy and insurance type were statistically significant predictors of the Fluid cognitive composite (p<.001 and p=.02, respectively) and significantly mediated racial differences on neurocognitive impairment. CONCLUSIONS: We replicated prior work showing that Blacks are at increased risk for poorer neurocognitive outcomes post-stroke than Whites. Health literacy and insurance type might be important modifiable factors influencing these differences. (JINS, 2017, 23, 640-652).

Linking of the quality of life in neurological disorders (Neuro-QoL) to the international classification of functioning, disability and health.

BACKGROUND: The quality of life in neurological disorders (Neuro-QoL) is a U.S. National Institutes of Health initiative that produced a set of self-report measures of physical, mental, and social health experienced by adults or children who have a neurological condition or disorder. OBJECTIVE: To describe the content of the Neuro-QoL at the item level using the World Health Organization's international classification of functioning, disability and health (ICF). METHODS: We assessed the Neuro-QoL for its content coverage of functioning and disability relative to each of the four ICF domains (i.e., body functions, body structures, activities and participation, and environment). We used second-level ICF three-digit codes to classify items into categories within each ICF domain and computed the percentage of categories within each ICF domain that were represented in the Neuro-QoL items. RESULTS: All items of Neuro-QoL could be mapped to the ICF categories at the second-level classification codes. The activities and participation domain and the mental functions category of the body functions domain were the areas most often represented by Neuro-QoL. Neuro-QoL provides limited coverage of the environmental factors and body structure domains. CONCLUSIONS: Neuro-QoL measures map well to the ICF. The Neuro-QoL-ICF-mapped items provide a blueprint for users to select appropriate measures in ICF-based measurement applications.

Relationships between environmental factors and participation in adults with traumatic brain injury, stroke, and spinal cord injury: a cross-sectional multi-center study.

PURPOSE: To develop and evaluate a model of environmental factors-participation relationships for persons with traumatic brain injury (TBI), stroke, and spinal cord injury (SCI), and test whether this model differed across three diagnostic groups, as well as other demographic and clinical characteristics. METHODS: A cross-sectional observational study included 545 community-dwelling adults with neurological disorders (TBI = 166; stroke = 189; SCI = 190) recruited at three academic medical centers. Participants completed patient-reported measures of environmental factors and participation. RESULTS: The final structural equation model had acceptable fit to the data (CFI = 0.923; TLI = 0.898; RMSEA = 0.085; SRMR = 0.053), explaining 63% of the variance in participation in social roles and activities. Systems, services, and policies had an indirect influence on participation and this relation was mediated by social attitudes and the built and natural environment. Access to information and technology was associated with the built and natural environment which in turn influence on participation (ps < 0.001). The model was consistent across sex, diagnosis, severity/type of injury, education, race, age, marital status, years since injury, wheelchairs use, insurance coverage, personal or household income, and crystallized cognition. CONCLUSIONS: Social and physical environments appear to mediate the influence of systems, services, and policies on participation after acquired neurological disorders. These relations are stable across three diagnostic groups and many personal and clinical factors. Our findings inform health and disability policy, and provide guidance for implementing the initiatives in Healthy People 2020 in particular for people with acquired neurological disorders.

Evaluating Psychometric Properties of the Spanish-version of the Pediatric Functional Assessment of Chronic Illness Therapy-Perceived Cognitive Function (pedsFACIT-PCF).

PURPOSE: The pediatric Functional Assessment of Chronic Illness Therapy-Perceived Cognitive Function (pedsFACIT-PCF) is a 13-item short-form derived from the pediatric Perceived Cognitive Function item bank (pedsPCF), which was developed to measure children's daily cognitive behaviors and was validated on the US general population and children with cancer. This study evaluated the psychometric properties of Spanish language pedsFACIT-PCF and the measurement equivalence between Spanish and English versions. METHODS: pedsFACIT-PCF items were translated into Spanish using a standard iterative methodology. A total of 1358 English- and 604 Spanish-speaking children aged 8-17 years who completed English and Spanish versions of pedsFACIT-PCF, respectively, were administered through an Internet survey company. Unidimensionality was evaluated using confirmatory factor analysis. Item responses were modeled using item response theory. The presence and impact of differential item functioning (DIF) were evaluated using ordinal logistic regression. RESULTS: Unidimensionality of the pedsFACIT-PCF was supported. One of the 13 items demonstrated statistically significant DIF by language; however, impacts of language DIF on both individual scores and at the test level were negligible. No Spanish items showed DIF with respect to age and gender. CONCLUSIONS: The 13-item pedsFACIT-PCF demonstrated stable measurement properties on language, gender and age and can be used for future trials.

Spanish translation and linguistic validation of the quality of life in neurological disorders (Neuro-QoL) measurement system.

INTRODUCTION: The quality of life in neurological disorders (Neuro-QoL) measurement system is a 470-item compilation of health-related quality of life domains for adults and children with neurological disorders. It was developed and cognitively debriefed in English and Spanish, with general population and clinical samples in the USA. This paper describes the Spanish translation and linguistic validation process. METHODS: The translation methodology combined forward and back-translations, multiple reviews, and cognitive debriefing with 30 adult and 30 pediatric Spanish-speaking respondents in the USA. The adult Fatigue bank was later also tested in Spain and Argentina. A universal approach to translation was adopted to produce a Spanish version that can be used in various countries. Translators from several countries were involved in the process. RESULTS: Cognitive debriefing results indicated that most of the 470 Spanish items were well understood. Translations were revised as needed where difficulty was reported or where participants' comments revealed misunderstanding of an item's intended meaning. Additional testing of the universal Spanish adult Fatigue item bank in Spain and Argentina confirmed good understanding of the items and that no country-specific word changes were necessary. CONCLUSION: All the adult and pediatric Neuro-QoL measures have been linguistically validated with Spanish speakers in the USA. Instruments are available for use at www.assessmentcenter.net.

Feasibility of computerized adaptive testing for collection of patient-reported outcomes after inpatient rehabilitation.

OBJECTIVE: To evaluate the feasibility of computer adaptive testing (CAT) using an Internet or telephone interface to collect patient-reported outcomes after inpatient rehabilitation and to examine patient characteristics associated with completion of the CAT-administered measure and mode of administration. DESIGN: Prospective cohort study of patients contacted approximately 4 weeks after discharge from inpatient rehabilitation. Patients selected an Internet or telephone interface. SETTING: Rehabilitation hospital. PARTICIPANTS: Patients (N=674) with diagnoses of neurologic, orthopedic, or medically complex conditions. INTERVENTIONS: None. MAIN OUTCOME MEASURE: CAT version of the Community Participation Indicators (CAT-CPI). RESULTS: From an eligible pool of 3221 patients, 674 (21%) agreed to complete the CAT-CPI. Patients who agreed to complete the CAT-CPI were younger and reported slightly higher satisfaction with overall care than those who did not participate. Among these patients, 231 (34%) actually completed the CAT-CPI; 141 (61%) selected telephone administration, and 90 (39%) selected Internet administration. Decreased odds of completing the CAT-CPI were associated with black and other race; stroke, brain injury, or orthopedic and other impairments; and being a Medicaid beneficiary, whereas increased odds of completing the CAT-CPI were associated with longer length of stay and higher discharge FIM cognition measure. Decreased odds of choosing Internet administration were associated with younger age, retirement status, and being a woman, whereas increased odds of choosing Internet administration were associated with higher discharge FIM motor measure. CONCLUSIONS: CAT administration by Internet and telephone has limited feasibility for collecting postrehabilitation outcomes for most rehabilitation patients, but it is feasible for a subset of patients. Providing alternative ways of answering questions helps assure that a larger proportion of patients will respond.

Predictors of participation enfranchisement after spinal cord injury: the mediating role of depression and moderating role of demographic and injury characteristics.

OBJECTIVES: (1) To examine the mediating effects of depressive symptoms on the relations between employment, grief, depression treatment, and participation enfranchisement after spinal cord injury (SCI); and (2) to examine the moderating role of demographic and injury characteristics, including sex, race, marital status, education, and injury level, and completeness on these relations. DESIGN: Cross-sectional survey as part of the Project to Improve Symptoms and Mood after SCI (PRISMS). SETTING: Rehabilitation facilities. PARTICIPANTS: Persons with SCI (N=522; average age, 42 y; 76% men; 64% white; 64% completed at least a high school education) enrolled from 2007 to 2011. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Participation enfranchisement. RESULTS: The final model fit the data relatively well (comparative fix index=.939; Tucker-Lewis Index=.894; root mean square error of approximation=.066; 90% confidence interval, .043-.089), explaining 32% of the variance in participation enfranchisement. Enfranchisement was positively related to employment and negatively related to depression. Grieving the loss of a loved one and the use of an antidepressant or psychotherapy were related to participation enfranchisement; these relations were mediated by depressive symptoms. Multigroup analyses supported the model's invariance across sex, marital status, severity of injury, and level of injury. CONCLUSIONS: Depression appears to mediate the influence of employment, grief, and depression treatments on participation enfranchisement after SCI. These relations are applicable regardless of sex, marital status, and injury completeness and level. These findings highlight efforts to improve the detection and treatment of depression in SCI rehabilitation programs that may enhance participation.