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.

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.

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.

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.

Work process related to cerebral palsy of neurological rehabilitation centers.

OBJECTIVE: To evaluate the work process for CP cases in different rehabilitation centers according to Brazilian health policies and recommendations from the "World Report on Disability". METHODS: A questionnaire - Evaluation Process of Rehabilitation of Children with CP was applied to the Coordinators of 13 services. This instrument has a maximum score of 108 points. RESULTS: The results of the questionnaire varied from 28 to 64 points. The mean and SD were 43.5 and 10.9, respectively. The main administrative difficulties were: (a) presence of unmet demand, (b) patient absenteeism, (c) referral to primary care services, (d) inadequate physical facilities, (e) the scarce provision of prosthetics and orthotics, (f) insufficient financial resources, (g) human resources training, (h) difficulties with the use of the information system and (i) transportation difficulties for patients. CONCLUSION: Administrative and clinical guidelines are needed for uniformity of the work process of the rehabilitation centers.