Objective: People with spinal cord injury/disease (SCI/D) have high healthcare needs. Using data from the second International Spinal Cord Injury (InSCI) community survey, the objective of this study is to determine the performance of healthcare systems for people with SCI/D. Specifically, health utilities for people with SCI/D and the country's healthcare system performance relative to other countries with comparable economic profiles will be examined.
Design: A cross-sectional, multi-national, observational cohort study.
Setting: Community setting with participants from 31 countries across six World Health Organization regions.
Participants: Of the 15,051 participants completing the survey between May 2022 and October 2024, 72% were male with a median age of 54 years, 55% having an incomplete injury and 64% having paraplegia.
Interventions: Not applicable MAIN OUTCOME MEASURES: Health-related quality of life was assessed by reporting health utilities using the EQ-5D-5L. Sixteen healthcare system performance indicators for five domains were derived by mapping the InSCI survey items to the Commonwealth Fund domains.
Results: Health utility values ranged from 0.75 for Finland, a high-income country, to -0.01 for Iran, an upper-middle income country. All 31 countries have strengths and areas for improvement across sixteen indicators. High-income countries generally had higher health utility ratings and better rankings for their healthcare system performance. However, the healthcare systems in many of the upper-middle and lower-middle-income countries performed well, and efficiently utilized limited resources.
Conclusion: To optimize health and participation in the community, the healthcare system must be responsive and meet the needs for people living with SCI/D. Results from this study provide evidence on the link between healthcare policies, resources and health outcomes for people with SCI, which can inform policy change.
Objective: To engage young adults with intellectual disabilities (ID) in redesigning the Vocational Fit Assessment (VFA), an algorithm-based assessment to support customized employment decisions for people with ID, toward an accessible self-report tool, the VFA Self-Report (VFA-SR).
Design: A mixed-methods, competency-based approach to assessment and technology design for young adults with ID. We conducted cross-sectional cognitive interviews to collect qualitative and quantitative data on the interpretability of 102 candidate items and tool accessibility. Participants learned the VFA-SR rating scale, answered items while describing performance, and responded to Likert-style usability questions.
Setting: Community.
Participants: Eleven young adults (N=11; aged 19-23y) with mild/moderate ID.
Interventions: Not applicable.
Main outcome measures: Not applicable.
Results: Five items on the VFA-SR were modified based on qualitative data from interviews. Participants were highly likely to answer "Yes" to items that described their performance positively, with an average alignment between "Yes" selections and positive performance of 97% (SD, 5%). All participants either "agreed" or "strongly agreed" that the VFA-SR was easy to use, and 9 reported feeling confident using it.
Conclusions: Overall, young adults with mild/moderate ID felt the current iteration of the VFA-SR was easy to use and responded to the rating scale items as intended. We gained valuable insights into how to present information to young adults with ID, specific improvements to the items, and considerations for accessibility in subsequent iterations of the tool. Our study developed a version of the VFA that incorporates person-centered measurement principles (eg, Patient-Driven, Transparent, Comprehensible, and Timely) by encompassing young adults' goals, preferences, and priorities in employment planning decisions.
Objective: To test the preliminary effect of an innovative, in-home person-centered stroke telerehabilitation program combining Rasch keyform mapping with metacognitive strategy training.
Design: Single-group pre-/posttest quasi-experimental design.
Setting: University research laboratory and in-home telerehabilitation.
Participants: Thirty (N=30) stroke survivors with a mean age ± SD of 59.7±16 years, 3.92 years poststroke (SD, 5.76), and with arm/hand hemiparesis.
Interventions: The Fugl-Meyer Assessment of the Upper Extremity (FMA-UE) keyform, derived from Rasch analysis, maps personalized motor skill levels to the likelihood of successfully performing home/community activities of varying difficulty. Scored keyforms were made available to participants. Participants/therapists co-created an in-home telerehabilitation program (nine 1-h sessions over 6 wks) to address participants' self-identified home activity goals through individualized cognitive strategy training using a metacognitive strategy training approach.
Main outcome measures: Activity performance using the Patient-Specific Functional Scale (PSFS); self-efficacy using the Stroke Self-Efficacy Questionnaire; skill generalization using the Performance Quality Rating Scale (PQRS); and paretic arm motor ability using the telerehabilitation-specific FMA-UE (tFMA-UE). Pre-to-post mean score differences were compared using the Wilcoxon signed-rank test (P<.05), and Cohen's d indicated effect size.
Results: Ninety percent of participants completed the intervention. The mean pre-to-post score differences ± SD were as follows: PSFS: pre: 2.30±1.67, post: 5.76±1.99, P<.001, d=1.73; Stroke Self-Efficacy Questionnaire: pre: 87.93±18.24, post: 99.96±12.92, P<.001, d=1.12; PQRS Completeness: pre: 9.19±1.00, post: 9.33±1.75, P=.13; PQRS Quality: pre: 4.04±2.09, post: 5.72±2.24, P<.001, d=1.25; telerehabilitation-specific FMA-UE: pre: 22.11±9.12, post: 23.74±9.43, P=.01, d=0.55.
Conclusions: Pre-to-post comparisons were significant, and effect sizes for all measures were medium/large. Combining keyform mapping with strategy training during stroke telerehabilitation may facilitate the co-creation of personalized intervention plans. The combined intervention may improve paretic upper extremity motor skills and increase activity performance, self-efficacy, and skill generalization.
Objective: To characterize opinions and experiences related to use of artificial intelligence (AI) in the context of patient-accessible electronic medical records in rehabilitation (PAEHR or "open notes").
Design: Rehabilitation providers and patients with acquired brain injury (ABI) completed a web-based survey.
Setting: Provider participants were recruited via publicly-available email lists published by licensure boards and via internal listservs within a large Midwestern healthcare system. Patient participants were recruited via medical records search within the same healthcare system.
Participants: 677 providers and 270 patients with ABI completed the survey. Providers (physical therapy, occupational therapy, speech-language pathology) were working in settings that utilize electronic health records. Adults with ABI had received rehabilitative care between 2021 and 2024.
Interventions: Not Applicable.
Main outcome measures: Participants responded to multiple choice, Likert-scale, and open-response questions about their experiences with and opinions about AI in the context of clinical documentation in rehabilitation.
Results: Both groups reported little experience with AI in daily life or healthcare contexts. Both groups reported concerns regarding AI accuracy and privacy. Most providers expressed interest in AI tools for supporting clinical documentation; patients with ABI expressed more hesitancy. Both groups agreed that a patient-directed summary would be helpful for improving the utility of open notes. Both groups rated Goals, Progress, Activities, and Home Exercise Programs as the most important note components for patients to understand.
Conclusions: Rehabilitation providers and patients with ABI agree that patient-directed note summaries may be one way to improve open notes. Generative AI provides one potential pathway for creating such a summary without undue clinician burden, but both providers and patients express significant concerns about accuracy and privacy. Future work should continue to evaluate the potential of AI solutions for improving patient-provider communication in the open notes era, while mitigating potential drawbacks.
Objective: To investigate the long-term functional independence of individuals with prolonged disorders of consciousness (DOC) who emerge from the minimally conscious state (MCS).
Design: Retrospective cohort study. Follow-up assessments were conducted at 6 and 12 months after emergence.
Setting: Long-term neurorehabilitation center.
Participants: We conducted a retrospective analysis of 62 individuals with prolonged DOC who emerged from MCS and completed 6- and 12-month follow-up assessments. Individuals were predominantly men (79%), with a median age of 35 years (interquartile range [IQR]: 25.9-49.4), and most had sustained a traumatic brain injury (74%). At admission, 21% of individuals were in an unresponsive wakefulness state and 79% in MCS (44% MCS- and 56% MCS+).
Interventions: Not applicable.
Main outcome measures: Functional independence was evaluated using the Disability Rating Scale (DRS), the Barthel Index (BI), the Functional Independence Measure (FIM), and the Functional Assessment Measure (FAM). Descriptive statistics and categorical analyses were used to evaluate changes across timepoints.
Results: At 6 months after emergence, individuals showed severe functional dependence, with most of the sample categorized as extremely or severely disabled. Median scores indicated poor independence across all scales (DRS: 16/29 [IQR=8.25-18]; BI: 10/100 [IQR=0.25-31]; FIM: 29.5/126 [IQR=20-46.75]; FIM+FAM: 52 [IQR=36.26-80]). By 12 months, slight but nonsignificant improvements were observed (DRS: 14 [IQR=8-18]; BI: 20.5 [IQR=2.25-52.5]; FIM: 32 [IQR=23-63.25]; FIM+FAM: 60 [IQR=37.25-107]), with only a minority transitioning to less severe disability categories. Most remained highly dependent in motor, cognitive, and daily living activities.
Conclusions: Individuals with prolonged DOC generally show limited functional recovery after emerging from MCS, with only minimal group-level improvements during the first year. These findings highlight the persistence of severe disability after emergence from prolonged DOC and the importance of long-term care strategies.
Objective: To characterize opinions and experiences related to patient-accessible electronic health records in rehabilitation (or "open notes") in patients with a history of acquired brain injury (ABI) and rehabilitation providers.
Design: Patients with ABI and rehabilitation providers completed a web-based survey.
Setting: Patients were identified and recruited from medical records in a large Midwestern health care system. Providers were recruited through internal listservs within the same health care system as well as publicly available state licensure board email lists.
Participants: Patients with ABI (N=284) and rehabilitation providers (N=740) participated in the study. Adults with ABI had received rehabilitative care between 2021 and 2024, and rehabilitation providers (physical therapy, occupational therapy, speech-language pathology) were working in settings that use electronic health records. Primary analyses were conducted with responses from the 149 patients who reported reading at least 1 rehabilitation note in an electronic health record and 390 providers who reported that a patient had read one of their notes.
Interventions: Not applicable.
Main outcome measures: Participants responded to multiple choice, Likert scale, and open-response questions about their experiences with and opinions about open notes in rehabilitation.
Results: Patients with ABI were enthusiastic about open notes in rehabilitation, with a large majority agreeing that access to open notes reinforces their rehabilitative care and improves their connection to their providers. Patients with ABI were unconcerned about the potential for notes to be confusing, offensive, or upsetting. In contrast, providers were ambivalent about open note access, with a majority expressing concerns that patients might misunderstand or be offended by their notes. Rehabilitation providers also expressed significant burden surrounding clinical documentation and reported that patient access to notes increased this burden and disagreed that it improved patient-provider communication.
Conclusions: Results suggest significant tensions between patient and provider perspectives surrounding open rehabilitation notes. Future work should examine methods for increasing the utility of open notes in supporting improved patient-provider communication while minimizing provider documentation burden.

