Task-specific training for bicycle-riding goals in ambulant children with cerebral palsy: a randomized controlled trial.

AIM: To determine whether a task-specific physiotherapist-led training approach is more effective than a non-specific parent-led home programme for attaining bicycle-riding goals in ambulant children with cerebral palsy (CP). METHOD: Sixty-two ambulant children with CP aged 6 to 15 years (33 males, 29 females, mean age 9y 6mo) with bicycle-riding goals participated in this multi-centre, assessor-blind, parallel-group, superiority randomized controlled trial. Children in the task-specific group participated in a physiotherapist-led, group-based, intensive training programme. Children in the parent-led home group were provided with a practice schedule, generic written information, and telephone support. Both programmes involved a 1-week training period. The primary outcome was goal attainment at 1 week after training measured using the Goal Attainment Scale. Secondary outcomes included bicycle skills, participation in bicycle riding, functional skills, self-perception, physical activity, and health-related quality of life at 1 week and 3 months after training. RESULTS: Children in the task-specific training group had greater odds of goal attainment than those in the parent-led home programme at 1 week after intervention (odds ratio [OR] 10.4, 95% confidence interval [CI] 2.8-38.6), with evidence for superiority retained at 3 months (OR 4.0, 95% CI 1.3-12.5). INTERPRETATION: The task-specific physiotherapist-led training approach was more effective for attaining bicycle-riding goals than a non-specific parent-led home programme in ambulant children with CP.

Care management in a French cohort with Down syndrome from the AnDDI-Rares/CNSA study.

Down syndrome (DS) is a genetic neurodevelopmental disorder. In individuals with DS, a multidisciplinary approach to care is required to prevent multiple medical complications. The aim of this study was to describe the rehabilitation, medical care, and educational and social support provided to school-aged French DS patients with varying neuropsychological profiles. A mixed study was conducted. Quantitative data were obtained from a French multicentre study that included patients aged 4-20 years with diverse genetic syndromes. Qualitative data were collected by semi-structured face-to-face interviews and focus groups. Ninety-five DS subjects with a mean age of 10.9 years were included. Sixty-six per cent had a moderate intellectual disability (ID) and 18.9% had a severe ID. Medical supervision was generally multidisciplinary but access to medical specialists was often difficult. In terms of education, 94% of children under the age of six were in typical classes. After the age of 15, 75% were in medico-social institutions. Analysis of multidisciplinary rehabilitation conducted in the public and private sectors revealed failure to access physiotherapy, psychomotor therapy and occupational therapy, but not speech therapy. The main barrier encountered by patients was the difficulty accessing appropriate facilities due to a lack of space and long waiting lists. In conclusion, children and adolescents with DS generally received appropriate care. Though the management of children with DS has been improved considerably, access to health facilities remains inadequate.

Neuro-rehabilitation service during COVID-19 pandemic: Best practices from UK.

This paper provides the context of COVID-19 outbreak with special reference to hospital-based neurorehabilitation services in the UK and transferrable lessons for similar services globally. While the COVID-19 pandemic has created numerous challenges at all levels and forced us to confront our own vulnerabilities as individuals, teams, services, communities and on the global stage, it has also simultaneously offered us opportunities for transformation. Converting catastrophe into opportunity requires creativity, diligence, innovation, strategy and vision. This reflection serves to identify the challenges we encountered, the solutions we applied and the opportunities that we have taken. In the wake of an information avalanche, service and clinical practice challenge, service capacity challenge and above all, a unique and timely reminder of our own humanity and the inter-connectedness and fragility of human societies, we have endeavoured to identify and describe some crucial leadership facets, which are supporting our journey through this global health crisis.

La neurorrehabilitación, un proceso de alta complejidad / Neurorehabilitation, a highly complex process

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Assessing the Ability of Comorbidity Indexes to Capture Comorbid Disease in the Inpatient Rehabilitation Spinal Cord Injury Population.

OBJECTIVE: To examine whether commonly used comorbidity indexes (Deyo-Charlson comorbidity index, Elixhauser comorbidity index, the Centers for Medicare and Medicaid Services [CMS] comorbidity tiers) capture comorbidities in the acute traumatic and nontraumatic SCI inpatient rehabilitation population. DESIGN: Retrospective cross-sectional study. PARTICIPANTS: Data were obtained from the Uniform Data System for Medical Rehabilitation from October 1, 2015 to December 31, 2017 for adults with spinal cord injury (SCI) (Medicare-established Impairment Group Codes 04.110-04.230, 14.1, 14.3). This study included SCI discharges (N=66,235) from 833 inpatient rehabilitation facilities. MAIN OUTCOME MEASURES: International Classification of Diseases-10th Revision-Clinical Modifications (ICD-10-CM) codes were used to assess 3 comorbidity indexes (Deyo-Charlson comorbidity index, Elixhauser comorbidity index, CMS comorbidity tiers). The comorbidity codes that occurred with >1% frequency were reported. The percentages of discharges for which no comorbidities were captured by each comorbidity index were calculated. RESULTS: Of the total study population, 39,285 (59.3%) were men and 11,476 (17.3%) were tetraplegic. The mean number of comorbidities was 14.7. There were 13,939 distinct ICD-10-CM comorbidity codes. There were 237 comorbidities that occurred with >1% frequency. The Deyo-Charlson comorbidity index, Elixhauser comorbidity index, and the CMS tiers did not capture comorbidities of 58.4% (95% confidence interval, 58.08%-58.84%), 29.4% (29.07%-29.76%), and 66.1% (65.73%-66.46%) of the discharges in our study, respectively, and 28.8% (28.42%-29.11%) of the discharges did not have any comorbidities captured by any of the comorbidity indexes. CONCLUSION: Commonly used comorbidity indexes do not reflect the extent of comorbid disease in the SCI rehabilitation population. This work suggests that alternative measures may be needed to capture the complexity of this population.

Perceived Usability and Acceptability of Videoconferencing for Delivering Community-Based Rehabilitation to Individuals with Acquired Brain Injury: A Qualitative Investigation.

OBJECTIVES: There is limited research on the use of telerehabilitation platforms in service delivery for people with acquired brain injury (ABI), especially technologies that support delivery of services into the home. This qualitative study aimed to explore the perspectives of rehabilitation coordinators, individuals with ABI, and family caregivers on the usability and acceptability of videoconferencing (VC) in community-based rehabilitation. Participants' experiences and perceptions of telerehabilitation and their impressions of a particular VC system were investigated. METHODS: Guided by a theory on technology acceptance, semi-structured interviews were conducted with 30 participants from a community-based ABI service, including 13 multidisciplinary rehabilitation coordinators, 9 individuals with ABI, and 8 family caregivers. During the interview, they were shown a paper prototype of a telehealth portal for VC that was available for use. Interview transcripts were coded by two researchers and analysed thematically. RESULTS: The VC was used on average for 2% of client consultations. Four major themes depicted factors influencing the uptake of VC platforms; namely, the context or impetus for use, perceived benefits, potential problems and parameters around use, and balancing the service and user needs. Participants identified beneficial uses of VC in service delivery and strategies for promoting a positive user experience. CONCLUSIONS: Perceptions of the usability of VC to provide services in the home were largely positive; however, consideration of use on a case-by-case basis and a trial implementation was recommended to enhance successful uptake into service delivery.

Introduction of Network-Based Healthcare at Kaiser Permanente.

BACKGROUND: Early 2014, Kaiser Permanente decided to adopt an innovative model for network-based allied healthcare for persons with Parkinson's disease (PD), based on the principles of the Dutch ParkinsonNet. OBJECTIVE: We present the interventions that were performed to implement this method at Kaiser Permanente and we show the first outcomes based on these interventions. METHODS: In this study, 57 physical therapists, 18 speech therapists and 20 occupational therapists, as well as 13 medical centers across the state of California were included. Nine interventions were performed more or less simultaneously, including training and education of healthcare providers and patients, a train the trainer curriculum, organizing IT, streamlining referral processes and building networks. RESULTS: At the start, less than 30% of the patients within the Southern California Region received specialized allied health treatment (consisting of, i.e., gait training, voice training or guidance in activities of daily life). After one year, almost 55% of patients received specialized allied health treatment. In the second year, this number increased to just under 67%, suggesting a sustained concentration of care (the second core component of networked care). This can be seen as a first indicator for successful implementation of the ParkinsonNet network at Kaiser Permanente. CONCLUSIONS: The importance of these findings lies in the fact that a healthcare innovation that proved effective in one country can be transferred successfully to another country and to another healthcare system.

A comparative examination of models of service delivery intended to support community integration in the immediate period following inpatient rehabilitation for spinal cord injury.

STUDY DESIGN: Qualitative study using semi-structured interviews. OBJECTIVES: To describe and compare models of service delivery intended to support community integration in the immediate period following inpatient rehabilitation for SCI, and describe the characteristics of these models or approaches. SETTING: Spinal services from multiple international countries METHODS: Semi-structured interviews were completed with 12 participants from a convenience sample of ten spinal services from developed economies. Interviews were audio-recorded, transcribed verbatim and thematically analysed. RESULTS: Three themes were identified, and are described with supporting quotations. These are: Theme One-Models of service delivery (sub-themes: staffing, peer mentors, facilitating community integration during inpatient rehabilitation; Theme Two-Services provided (sub-themes: telehealth, vocational services, groups); Theme Three-Facilitating self-efficacy and self-management. CONCLUSIONS: A variety of models aimed at supporting community integration in the immediate period following inpatient rehabilitation for SCI were found. Multi-disciplinary staffing and involvement of peer mentors was common to all services. The importance of vocational rehabilitation was acknowledged by all participants, although the approaches taken to this varied. Telehealth has the potential to assist in self-management, particularly for patients who live a long distance from the spinal unit or are confined to the home for health reasons, and could be further developed. Although service models are greatly influenced by the funding context, the findings from this study can be used to inform service planning in this area.

Methods for development of structure, process and outcome indicators for prioritized spinal cord injury rehabilitation Domains: SCI-High Project.

Background: High-quality rehabilitation care following spinal cord injury or disease (SCI/D) is critical for optimizing neurorecovery and long-term health outcomes. This manuscript describes the methods used for developing, refining, and implementing a framework of structure, process, and outcome indicators that reflect high-quality rehabilitation among adults with SCI/D in Canada. Methods: This quality improvement initiative was comprised of the following processes: (1) prioritization of care Domains by key stakeholders (scientists, clinicians, therapists, patients and stakeholder organizations); (2) assembly of 11 Domain-specific Working Groups including 69 content experts; (3) conduct of literature searches, guideline and best practice reviews, and outcome synthesis by the Project Team; (4) refinement of Domain aim and construct definitions; (5) conduct of cause and effect analysis using Driver diagrams; (6) selection and development of structure, process and outcome indicators; (7) piloting and feasibility analysis of indicators and associated evaluation tools; and, (8) dissemination of the proposed indicators. Result: The Project Team established aims, constructs and related structure, process, and outcome indicators to facilitate uniform measurement and benchmarking across 11 Domains of rehabilitation, at admission and for 18 months thereafter, among adult Canadians by 2020. Conclusion: These processes led to the selection of a feasible set of indicators that once implemented should ensure that adults with SCI/D receive timely, safe, and effective rehabilitation services. These indicators can be used to assess health system performance, monitor the quality of care within and across rehabilitation settings, and evaluate the rehabilitation outcomes of the population to ultimately enhance healthcare quality and equity.

Development of an implementation-focused network to improve healthcare delivery as informed by the experiences of the SCI knowledge mobilization network.

Context: Implementing research findings into clinical practice is challenging. This manuscript outlines the experiences and key learnings from a network that operated as a community of practice across seven Canadian Spinal Cord Injury (SCI) rehabilitation centers. These learnings are being used to inform a new implementation-focused network involving SCI rehabilitation programs based in Ontario, Canada. Methods: The SCI KMN adapted and applied implementation science principles based on the National Implementation Research Network's (NIRN) Active Implementation Frameworks in the implementation of best practices in pressure injury and pain prevention and management. Results: The SCI KMN was successful in implementing best practices in both pressure ulcer and pain prevention and management across the various participating sites. Other key objectives met were building capacity in implementation methods in site personnel so that project scaling could occur with these skills and expertise applied to numerous other initiatives. Additionally, various papers, abstracts and conference presentation as well as an implementation guide were disseminated to inform the field of implementation science. Conclusion: The key lessons learned from this experience are being used to develop a new implementation-focused network. Features felt to be especially important for the SCI KMN includes a highly representative governance structure, the use of indicators within an overall evaluation framework and the systematic application of implementation processes with shared learnings supporting each site.

Prioritization of rehabilitation Domains for establishing spinal cord injury high performance indicators using a modification of the Hanlon method: SCI-High Project.

Objectives: To prioritize Domains of SCI Rehabilitation Care (SCI-Care) based on clinical importance and feasibility to inform the development of indicators of quality SCI-Care for adults with SCI/D in Canada. Methods: A 17-member external advisory committee, comprised of key stakeholders, ranked 15/37 Domains of rehabilitation previously flagged by the E-scan project team for gaps between knowledge generation and clinical implementation. Priority scores (D) were calculated using the Hanlon formula: D=[A+(2×B)]×C , where A is prevalence, B is seriousness, and C is the effectiveness of available interventions. A modified "EAARS" (Economic, Acceptability, Accessibility, Resources, and Simplicity) criterion was used to rank feasibility on a scale of 0-4 (4 is high). The product of these two scores determined the initial Domain ranking. Following the consensus process, further changes were made to the Domain rankings. Results: Despite a low feasibility score, Sexual Health was ranked as high priority; and, the Community Participation and Employment Domains were merged. The 11 final prioritized Domains in alphabetic order were: Cardiometabolic Health; Community Participation and Employment; Emotional Well-Being; Reaching, Grasping, and Manipulation; Self-Management; Sexual Health; Tissue Integrity; Urinary Tract Infection; Urohealth; Walking, and Wheeled Mobility. Conclusions: The modified Hanlon method was used to facilitate prioritization of 11 of 37 Domains to advance the quality of SCI-care by 2020. In future, the Spinal Cord Injury Rehabilitation Care High Performance Indicators (SCI-High) Project Team will develop structure, process and outcome indicators for each prioritized Domain.

Need for structured healthcare organization and support for return to work after stroke in Sweden: Experiences of stroke survivors.

OBJECTIVE: To explore stroke survivors' experiences of healthcare-related facilitators and barriers concerning return to work after stroke. DESIGN: A qualitative study. SETTING: Outpatient stroke rehabilitation unit at a University Hospital in southern Sweden. PARTICIPANTS: A convenient sample of 20 persons admitted to Skåne University Hospital for acute stroke care (median age 52 years), in employment of at least 10 h per week at stroke onset and having been referred to stroke rehabilitation within 180 days. METHODS: The interviews were performed by focus groups, and the data were analysed by content analysis. RESULTS: Facilitating factors were a tailored rehabilitation content with relevant treatments, adequate timing and a structured stepwise return-to-work process. A lack of sufficient early healthcare information, rehabilitation planning and coordination were perceived as barriers. An early rehabilitation plan, a contact person, and improved communication between rehabilitation actors were requested, as well as help with work transport, home care, children and psychosocial support for families. CONCLUSION: Tailored rehabilitation content and a structured stepwise return-to-work process facilitated return to work. Insufficient structure within the healthcare system and lack of support in daily life were perceived barriers to return to work, and need to be improved. These aspects should be considered in the return-to-work process after stroke.

[The Digital Gym in the neuromotor rehabilitation field]. / La Palestra Digitale in ambito neuromotorio.

SUMMARY: The digitization of processes has become a necessity to make health management remain sustainable. Current organizational models do not enable the increasing efficiency in process governance required by the increasing demand for rehabilitation services. Vice versa, new technologies have an innovative potential for compensation of disability and for operations management. This is context in which the concept of a "comprehensive digital rehabilitation" also said "digital gym" is developed: as a governance system for the whole inpatient rehabilitation path. The author describes the fundamentals of the Maugeri clinical model for a "Digital Gym" and examines some methodological, clinical and organizational issue concerning: information technology, machine operation protocols, clinical evaluation, machine operator interaction, patient doctor interaction, personalization of care, operational changes linked to the electronic workschedule, and the important training needs.

Development of the Parent Forum: An in-person approach to supporting caregivers of youth with spinal cord injury.

Context/Objective: Describe development, implementation, review, and redesign of a hospital-based, in-person psychoeducational intervention for caregivers of youth with spinal cord injury (SCI) ages 7-17. Design: Process evaluation/case study to describe intervention development, as well as preliminary evaluation data. Setting: Pediatric specialty hospital. Participants: 41 caregivers of youth with SCI. Interventions: Caregivers attended an in-person intervention ("Parent Forum"), after which they were randomized into two groups: one received monthly phone calls from a mental health professional and the other services as usual. Caregivers were invited to attend a second Parent Forum one year later. The current paper focuses solely on the Parent Forum components. Outcome Measures: Caregiver problem solving, study-specific satisfaction questions, and qualitative focus groups. Results: After consulting with multiple stakeholders (including caregivers, clinicians, and researchers), the first Parent Forum was designed to focus on caregiver health/well-being. While caregivers from Parent Forum I reported greater positive problem solving and relatively high satisfaction scores, they also reported wanting more time together and more discussion of their children's health. We redesigned Parent Forum II to incorporate this feedback which yielded positive results, particularly during focus groups. Conclusion: The purpose of this manuscript was to share our development process to inform other teams engaged in intervention design for this or similar populations. Our experience emphasized the need to not only involve multiple stakeholders, but to pilot test intervention components, and be open to modifying them after receiving participant feedback. The final intervention model yielded positive reactions, but also emphasized the need for ongoing caregiver support.

Effectiveness of individualized, goal directed institutional based rehabilitation programme in children with developmental delay disorders, in a region with limited rehabilitation accessibility.

PURPOSE: To evaluate effectiveness of individualized, goal directed rehabilitation protocol in improving functional outcomes in children with developmental delay disorders in a region with limited rehabilitation accessibility and to explore if goal setting influences changes observed in functional levels. METHODS: Children (6 months to 17 years) with developmental delay, who visited as out-patients to the Department of Physical Medicine and Rehabilitation and whose care givers were willing to participate in the study, were enrolled for a period of one year. Individualized rehabilitation protocol targeting the child's specific problems with a simultaneous home programme was performed. A single group pre-post study design was used to assess the protocol's effectiveness. OUTCOME MEASURES: Goal attainment scale (GAS), Gross Motor Function Classification System (GMFCS) Level, Gross Motor Functional Measure (GMFM) and Manual Ability Classification System (MACS) were administered pre and post-intervention monthly for 3 months. Statistical analysis was done using SPSS statistics version-22. RESULTS: Total of 32 children participated in the study. Significant differences between pre and post scores of GAS score (Wilcoxon's signed rank test [W value] = 4.937, p-value < 0.005), GMFCS (W value: -3.435, p-value < 0.005), GMFM (W value: 4.937, p-value < 0.005) and MAC score (W value: -4.714, p-value < 0.005) were noted at 3 months. No correlation was observed between the GAS pre-post score and GMFM, GMFCS and MAC pre-post scores. CONCLUSION: An effective rehabilitation programme in children with developmental delay should be individualized and should be goal directed to achieve maximum functional improvement. Improvement in the goals set were independent of the improvement in functional outcome levels. Care-givers play a pivotal role in both individualization and goal setting for rehabilitation, especially in a region with limited rehabilitation accessibility.

Multistage neurorehabilitation of an adolescent with severe anti-N-methyl-D-aspartate receptor encephalitis: a case report.

We report on a 15-year-old girl with severe anti-N-methyl-D-aspartate receptor encephalitis who had initial poor prognostic factors. We delineate the unique challenges faced in the rehabilitation of our patient including sleep disruption and food aversion. After 20 months of hospitalization and intensive rehabilitation, there was a significant improvement in functional abilities and self-care skills. However, she had residual neurocognitive deficits, visual perceptual, and motor coordination difficulties that continued to improve after discharge, attesting to the need for long-term rehabilitation. The case showed the need for a coordinated multidisciplinary approach, with both targeted therapies and neuropharmacology, tailored to facilitate the different stages of recovery unique to anti-N-methyl-D-aspartate receptor encephalitis patients.

A systematic review of the psychometric properties of the Action Research Arm Test in neurorehabilitation.

BACKGROUND/AIM: The Action Research Arm Test (ARAT) measures upper limb activity limitations in people with acquired brain injuries. Evidence relating to the use of this test in neurorehabilitation is scattered. This review identifies, rates and synthesises evidence on the original 1981 ARAT use within neurorehabilitation. Psychometric properties are reviewed, including specific examination of participants with upper limb spasticity. METHODS: Systematic review of published articles describing psychometric properties and/or use of the original version of the ARAT in neurorehabilitation. COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) search strategy, reporting and methodological checklist with criterion-based appraisal of quality criteria for good measurement properties were applied. A best evidence synthesis for each psychometric property was completed. RESULTS: In 28 included studies, participants had suffered a stroke or traumatic brain injury, with 46% >6 months post-injury. Six studies identified participants with upper limb spasticity. Methodological quality of psychometric properties ranged from poor to excellent. Best evidence synthesis determined moderate positive evidence for using the ARAT with people without limb spasticity: intra-rater reliability (ICC 0.71 (95% CI 0.53-0.89) to 0.99 (95% CI 0.98, 0.99)); responsiveness (ROC curve 0.72-0.88, SRM 0.89); and regarding construct validity, it is a valid measure of activity limitation. Limited evidence for psychometric properties of the ARAT were found when used with people with upper limb spasticity for construct validity and responsiveness (ES 0.55-0.78). Gaps in evidence were found for inter and test-retest reliability, measurement error, content validity, structural validity, floor and ceiling effects. CONCLUSIONS: The ARAT is an appropriate measure of activity limitation post-stroke and should be considered for use with people with TBI; evidence for people with upper limb spasticity is limited. Gaps and mixed limited to moderate evidence for psychometric properties in neurorehabilitation mean further research is required.