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1.
Disabil Rehabil Assist Technol ; : 1-11, 2024 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-38949081

RESUMEN

PURPOSE: Wheelchair users experience many barriers to physical activity as affordable and accessible exercise equipment options are limited. Thus, the home-based adapted rower (aROW) and gym-based aROW were developed. The objectives were to determine: 1) wheelchair users' preferences, perspectives, facilitators, and barriers to using the home-based versus the gym-based aROW, 2) perceived usability of the home and gym aROWs, and 3) recommendations to adapt the aROW further for home and community use. MATERIALS AND METHODS: In this two-phase exploratory mixed-methods study, participants completed one month of using a home aROW, followed by one month of using a community gym aROW. After each phase, participants completed a semi-structured interview and the System Usability Scale (SUS) questionnaire. Interview data were analyzed using conventional content analysis and effect size comparing SUS data was calculated. RESULTS AND CONCLUSIONS: Four categories were identified: what worked well, barriers to using the aROWs, what could be improved and important considerations. There was a large effect size in perceived usability between the aROWs with participants preferring the home aROW. Overall, rowing was enjoyable, and participants achieved positive physical outcomes. As preferences are individual, the home aROW provides wheelchair users with a potential choice between home or gym exercise.


Rowing is an enjoyable and effective form of aerobic exercise for wheelchair usersWheelchair users experience social, environment and financial barriers to engaging in exerciseThe home aROW provides a low-cost and accessible option for wheelchair-adapted aerobic exercise.

2.
Dev Med Child Neurol ; 2024 Apr 09.
Artículo en Inglés | MEDLINE | ID: mdl-38590274

RESUMEN

OBJECTIF: Afin de faciliter les études multisites et la recherche clinique d'envergure internationale, cette étude a pour but d'identifier des éléments de données communs (EDCs) normalisés et fondés sur un consensus pour l'arthrogrypose multiple congénitale (AMC). MÉTHODE: Une étude à méthodes mixtes comprenant plusieurs groupes de discussion et trois séries d'enquêtes Delphi modifiées pour parvenir à un consensus ont été menées. RÉSULTATS: Dans l'ensemble, 45 experts cliniques ainsi qu'adultes ayant une expérience vécue (dont 12 membres d'un consortium d'AMC) ont participé à cette étude à travers 11 pays en Amérique du Nord, Europe et Australie. Les EDCs comprennent 321 éléments de données et 19 mesures standardisées dans divers domaines, du développement du fœtus à l'âge adulte. Les éléments de données relatifs aux traits phénotypiques de l'AMC ont été cartographiés conformément à l'ontologie du phénotype humain (HPO). Une structure de gouvernance universelle, des protocoles de fonctionnement et des plans de développement durable ont été identifiés comme les principaux facilitateurs considérant que la capacité limitée de partage des données et la nécessité d'une infrastructure informatique fédérée étaient les principaux obstacles. INTERPRÉTATION: Une collecte de données systématiques sur l'AMC à l'aide d'EDCs permettra d'étudier sur les voies étiologiques, décrire le profil épidémiologique, et établir des corrélations génotype­phénotype de manière standardisée. Les EDCs proposés faciliteront les collaborations internationales multidisciplinaires en améliorant à grande échelle les études multicentriques, les possibilités de partage des données, ainsi que le transfert et la diffusion des connaissances.

3.
Dev Med Child Neurol ; 2024 Apr 06.
Artículo en Inglés | MEDLINE | ID: mdl-38581247

RESUMEN

OBJETIVO: Para facilitar los estudios multicéntricos y la investigación clínica internacional, este estudio pretende identificar de forma consensuada los elementos de datos estandarizados para la artrogriposis múltiple congénita (AMC). MÉTODO: Estudio de métodos mixtos de grupos de discusión y tres rondas de encuestas Delphi modificadas para llegar a un consenso utilizando dos escalas de clasificación por niveles. RESULTADOS: En total, 45 expertos clínicos y adultos con experiencia vivida (incluidos 12 miembros de un consorcio de AMC) participaron en este estudio procedentes de 11 países: Norteamérica, Europa y Australia. Los CDEs incluyen 321 elementos de datos y 19 medidas estandarizadas en varios dominios desde el desarrollo fetal hasta la edad adulta. Los elementos de datos relativos a los rasgos fenotípicos del CDEs se mapearon de acuerdo con la Ontología de Fenotipos Humanos. Se identificaron como principales facilitadores la estructura de gobernanza universal, protocolos operados de forma local y los planes de sostenibilidad, mientras que los principales obstáculos observados son la capacidad limitada para compartir datos y la necesidad de una infraestructura informática federada. INTERPRETACIÓN: La recopilación de datos sistemáticos sobre la AMC mediante CDEs permitirá investigar las vías etiológicas, describir el perfil epidemiológico y establecer correlaciones genotipo­fenotipo de forma estandarizada. Los CDEs propuestos facilitarán las colaboraciones multidisciplinares internacionales mejorando los estudios a gran escala y las oportunidades para compartir datos, translación de conocimiento y difusión.

4.
Dev Med Child Neurol ; 2024 Mar 16.
Artículo en Inglés | MEDLINE | ID: mdl-38491830

RESUMEN

AIM: To facilitate multisite studies and international clinical research, this study aimed to identify consensus-based, standardized common data elements (CDEs) for arthrogryposis multiplex congenita (AMC). METHOD: A mixed-methods study comprising of several focus group discussions and three rounds of modified Delphi surveys to achieve consensus using two tiered-rating scales were conducted. RESULTS: Overall, 45 clinical experts and adults with lived experience (including 12 members of an AMC consortium) participated in this study from 11 countries in North America, Europe, and Australia. The CDEs include 321 data elements and 19 standardized measures across various domains from fetal development to adulthood. Data elements pertaining to AMC phenotypic traits were mapped according to the Human Phenotype Ontology. A universal governance structure, local operating protocols, and sustainability plans were identified as the main facilitators, whereas limited capacity for data sharing and the need for a federated informatics infrastructure were the main barriers. INTERPRETATION: Collection of systematic data on AMC using CDEs will allow investigations on etiological pathways, describe epidemiological profile, and establish genotype-phenotype correlations in a standardized manner. The proposed CDEs will facilitate international multidisciplinary collaborations by improving large-scale studies and opportunities for data sharing, knowledge translation, and dissemination.

5.
Disabil Rehabil Assist Technol ; : 1-11, 2023 Sep 11.
Artículo en Inglés | MEDLINE | ID: mdl-37695264

RESUMEN

INTRODUCTION: Exercise is an important occupation for wheelchair users. Limited access to adapted aerobic exercise equipment in the community and lack of knowledge on how to exercise are barriers to exercise participation among wheelchair users. To address these barriers, the adapted rower (aROW) and adapted skier (aSKI) exercise machines and educational materials were created. PURPOSE: 1) To compare wheelchair users' perspectives of the effectiveness and usability of the aROW and aSKI. 2) To explore perceptions of educational materials to support use of the machines. MATERIALS AND METHODS: A sequential, mixed-methods study design was used. Six wheelchair users trialled the machines, and completed an interview and two usability questionnaires. Qualitative data were analysed using thematic and conventional content analysis. Usability scores of both machines were compared using the Wilcoxon Signed Ranks Test. RESULTS: Data show high usability of the aROW and aSKI. More set up challenges were reported for the aROW than the aSKI. Participants perceived both machines provided effective cardiovascular workouts, and each met their exercise goals differently. Participants preferred the instructional videos over instructional sheets and provided suggestions for improving both. The Wilcoxon Signed Ranks Test showed no statistically significant difference in usability between the aROW and aSKI. CONCLUSION: Implementing the aROW and aSKI in the community may address some equity issues that wheelchair users face by providing more aerobic exercise options. Results will inform educational material revisions to support use of the machines.IMPLICATIONS FOR REHABILITATIONThe adapted rower (aROW) and adapted skier (aSKI) were perceived as highly usable, suggesting provision of more adapted aerobic exercise options, like the aROW and aSKI, may address some exercise-related equity issues wheelchair users experience.Wheelchair users may consider multiple factors when choosing adapted exercise equipment, highlighting the importance of providing multiple options for adapted aerobic exercise equipment to facilitate agency in choice of exercise.

6.
Am J Med Genet C Semin Med Genet ; 193(2): 139-146, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-37102433

RESUMEN

Little is known about the mental well-being of adults living with arthrogryposis multiplex congenita (AMC). The objectives of this study were to determine the incidence of depression in an international population of adults with AMC and to identify variables independently associated with depression. This cross-sectional study used independent samples t-test and hierarchical multiple regression. The mean Hospital Anxiety and Depression Scale-depression (HADS-D) score of our sample, which included 60 adults with AMC, was 4.0 ± 3.6, with 19% having some signs of depression. Occupation status, age, sex, physical independence, environmental factors, anxiety, and fatigue explained 52.2% of the variance in HADS-D. The prevalence of depression in an adult sample of individuals with AMC is similar to that of the general adult population in the United States. Beyond direct interventions to ameliorate depression, rehabilitation clinicians may also consider treatments and interventions to decrease anxiety and reduce fatigue and environmental barriers.


Asunto(s)
Anomalías Múltiples , Artrogriposis , Humanos , Adulto , Estados Unidos , Artrogriposis/diagnóstico , Salud Mental , Estudios Transversales , Ansiedad/epidemiología , Bienestar Psicológico
7.
J Spinal Cord Med ; 46(1): 118-125, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-35254229

RESUMEN

OBJECTIVES: This purpose of this research was to (1) to evaluate eHealth and general health literacy levels among individuals with spinal cord injury (SCI) and (2) to identify relationships between eHealth literacy, general health literacy, and various sociodemographic factors. DESIGN: Cross-sectional. SETTING: The study was conducted in the community setting. PARTICIPANTS: As part of a larger study, a total of 50 community-dwelling individuals with SCI were recruited. INTERVENTIONS: n/a. OUTCOME MEASURES: Quantitative online survey data were collected on participants' sociodemographic characteristics, eHealth literacy (using the eHealth Literacy Scale), general health literacy (using the Brief Health Literacy Screening Tool). RESULTS: The average age of participants was 49 years old; 25 participants were male and 25 were female. A total of 39 participants experienced traumatic SCI and 11 participants experienced non-traumatic SCI. Participants demonstrated moderate levels of eHealth literacy (31.6 out of 40) and general health literacy (17.6 out of 20). A significant, positive correlation was found between eHealth literacy and general health literacy. Significant, positive correlations were found between general health literacy and sociodemographic factors, including income and education. A significant, negative correlation was found between general health literacy and time since injury. CONCLUSION: No previous studies we are aware of have evaluated perceived eHealth literacy and general health literacy among people with SCI. This study demonstrated the diverse range of eHealth literacy levels in SCI populations and how this, and other factors, may impact an individual's ability to self-manage and adopt to eHealth technologies.


Asunto(s)
Alfabetización en Salud , Traumatismos de la Médula Espinal , Telemedicina , Humanos , Masculino , Femenino , Persona de Mediana Edad , Estudios Transversales , Traumatismos de la Médula Espinal/epidemiología , Encuestas y Cuestionarios , Internet
8.
JMIR Res Protoc ; 11(10): e38715, 2022 Oct 07.
Artículo en Inglés | MEDLINE | ID: mdl-36206037

RESUMEN

BACKGROUND: Although there have been recent efforts to improve access to Canadian national parks, many remain not fully accessible to people with disabilities. Winter conditions, in particular, present challenges that limit their participation in outdoor activities. OBJECTIVE: This study aimed to develop a novel method to assess park access during winter, which will inform recommendations for national park standards to meet the needs of all park visitors (regardless of ability) during winter conditions. METHODS: A larger participatory mixed methods research project exploring park access was adapted. A 3-phase approach has already been proposed to achieve the study objectives. In the first phase, a scoping review of the existing accessibility standards will be conducted. In the second phase, objective audits of trails and features in 6 parks, 3 in western Canada and 3 in eastern Canada, will be conducted, as well as mobile interviews with 24 various participants in each region regarding their experiences of and recommendations for improving the park's accessibility. In the final phase, a Delphi participatory consensus development process will be used, based on the data gathered in the first 2 phases, to prioritize recommendations for standards. This paper will focus on the second phase of the study, specifically on whether the in-person winter mobile interviews (ie, walking and wheeling interviews) with people who have a wide range of disabilities while visiting 3 parks in 2 provinces were modified. Changes were made to accommodate the extreme winter weather conditions in Quebec while using safe and informative data collection methods. RESULTS: In Quebec, one park, where winter conditions are safer, has been assessed in person (n=4). Web-based interviews were used to facilitate the assessment of other winter and summer conditions in two other parks (n=8). Winter and web-based interviews were completed in April 2022. Data are currently being collected and analyzed, and results will be completed by December 2022. CONCLUSIONS: We expect that adapting the protocol to gather further information on winter conditions and access to parks will provide high-quality and rich data to better inform park access standards. This participatory mixed methods research will inform the development of park standards that consider the accessibility needs of all people. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38715.

10.
Top Spinal Cord Inj Rehabil ; 28(2): 205-215, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35521055

RESUMEN

Background: Our research team developed a mobile application (app) to facilitate health-related self-management behaviors for secondary conditions among individuals with spinal cord injury (SCI). To facilitate mobile app adoption and ongoing use into the community, it is important to understand potential users' expectations and needs. Objectives: The primary objective of this study was to explore user expectations of a mobile app intervention designed to facilitate self-management behavior among individuals with SCI. Methods: Data were collected via one-on-one, semi-structured interviews with a subsample of 20 community-dwelling participants enrolled in a larger, clinical trial. Analysis of the transcripts was undertaken using a six-phase process of thematic analysis. Results: Our analysis identified three main themes for expectations of the mobile app intervention. The first theme, desiring better health outcomes, identified participants' expectation of being able to improve their psychological, behavioral, and physical health outcomes and reduce associated secondary conditions. The second theme, wanting to learn about the mobile app's potential, identified participants' interest in exploring the functionality of the app and its ability to promote new experiences in health management. The third theme, desiring greater personal autonomy and social participation, identified participants' desire to improve their understanding of their health and the expectation for the app to facilitate social engagement with others in the community. Conclusion: By exploring end-users' expectations, these findings may have short-term effects on improving continued mobile health app use among SCI populations and long-term effects on informing future development of mobile app interventions among chronic disease populations.


Asunto(s)
Aplicaciones Móviles , Automanejo , Traumatismos de la Médula Espinal , Humanos , Motivación
11.
Top Spinal Cord Inj Rehabil ; 28(2): 196-204, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35521060

RESUMEN

Background: As eHealth technologies become a more prevalent means to access care and self-manage health, it is important to identify the unique facilitators and barriers to their use. Few studies have evaluated the use or potential use of eHealth technologies in spinal cord injury (SCI) populations. Objectives: The primary objective of this study was to explore and identify barriers and facilitators to engagement with eHealth technologies among individuals with SCI. Methods: A qualitative descriptive study was conducted. Data were collected via one-on-one, semi-structured interviews with a subsample of 20 community-dwelling participants enrolled in a larger clinical trial. Analysis of the transcripts was undertaken using a four-phase process of content analysis. Results: Our analysis identified three barriers to engagement with eHealth technologies, including (1) overcoming a digital divide to comprehending and utilizing eHealth technologies, (2) navigating internet resources that provide too much information, and (3) interacting with these technologies despite having limited hand function. Our analysis also identified three facilitators to using eHealth technologies, including (1) having previous successful experiences with eHealth technologies, (2) being able to use voice activation features, and (3) being able to interact in an online community network. Conclusion: By exploring barriers and facilitators to eHealth technology use, these findings may have a short-term impact on informing researchers and clinicians on important factors affecting engagement of individuals with SCI with telemedicine, mobile, and web applications (apps) and a long-term impact on informing future development of eHealth interventions and tools among chronic disease populations.


Asunto(s)
Traumatismos de la Médula Espinal , Telemedicina , Humanos , Vida Independiente , Investigación Cualitativa , Tecnología
12.
JMIR Res Protoc ; 11(3): e33611, 2022 Mar 31.
Artículo en Inglés | MEDLINE | ID: mdl-35357324

RESUMEN

BACKGROUND: Canada's national parks are world-renowned. However, despite recent attempts to improve access, many are not accessible to people with disabilities. With the advent of provincial and federal legislation, standards are being developed to assist with the design and management of parks. OBJECTIVE: The overarching objective of this study is to inform accessibility standards for federal parks that meet the needs of all park visitors, regardless of ability. The specific objectives of this study are to identify park accessibility standards that exist internationally, identify the accessibility challenges that people with disabilities face in park environments, and prioritize and recommend accessibility standards for national parks. METHODS: A 3-phase approach will be used to achieve the study objectives. In the first phase, a scoping review of the existing accessibility standards will be conducted. The second phase will include objective audits of trails and features in 6 parks, 3 in western Canada and 3 in eastern Canada, as well as mobile interviews with 24 diverse participants in each region regarding their experiences of and recommendations for improving the park's accessibility. In the final phase, a Delphi participatory consensus development process will be used, based on the data gathered in the first 2 phases, to prioritize recommendations for standards. RESULTS: We expect to find gaps in existing standards that do not account for the diverse range of accessibility requirements that people with disabilities have for visiting parks. We also expect to find that existing standards, on their own, may not be enough to ensure equitable access to all the experiences and amenities that parks have to offer. Development of subsequent guidelines and best practices may be necessary to address complex scenarios for which standards may not be the best approach to ensuring accessibility. CONCLUSIONS: The participatory and mixed methods approaches used in this study will provide rich insights for developing accessible park standards that consider the diverse needs of people with disabilities. The findings will also support the development or enhancement of park standards at all levels of government. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/33611.

13.
Spinal Cord ; 60(8): 706-711, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35169302

RESUMEN

STUDY DESIGN: Mixed-methods. OBJECTIVES: (1) To explore psychosocial and quality of life outcomes between those injured early versus later in life, and (2) to explore their post-injury experiences. SETTING: GF Strong Rehabilitation Centre, Vancouver, Canada. METHODS: For this community-based study, we recruited individuals with SCI (>55 years of age) who were either injured between the ages of 15-30 (n = 15) or after the age of 50 (n = 15). We collected quantitative data about participants' sociodemographics and participants completed standardised questionnaires assessing personal factors, environmental factors, life habits, and quality of life. An independent samples t test was performed for continuous variables and the Chi-square test was conducted for the categorical variables. Qualitative data were collected via semi-structured interviews. Thematic content analysis was performed on the interview transcripts. RESULTS: We found no statistically significant differences between the two groups on any of the psychosocial outcomes. However, those injured later in life were significantly more likely to be female, have a higher income, and live in residential care. We identified three main qualitative themes that were consistent across the two groups: 'dealing with health and changes in occupation', 'enacting interdependence', and 'living in the community'. Some sub-themes varied between groups. CONCLUSIONS: To facilitate better rehabilitation, clinicians need to be aware of disparities among people with SCI relating to age of injury. Across age cohorts, it is important to increase independence, provide greater support when entering or returning to the workforce, and reduce societal stigma.


Asunto(s)
Traumatismos de la Médula Espinal , Adolescente , Adulto , Canadá , Femenino , Humanos , Masculino , Investigación Cualitativa , Calidad de Vida , Traumatismos de la Médula Espinal/rehabilitación , Encuestas y Cuestionarios , Adulto Joven
14.
Spinal Cord ; 60(8): 694-700, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35110695

RESUMEN

STUDY DESIGN: Non-randomized crossover trial. OBJECTIVES: The objective of this study was to assess the oxygen uptake during exercise using the Adapted ROWing machine (AROW) compared to the more commonly used Arm Crank Ergometry (ACE) for people with spinal cord injury/disease (SCI/D) with or without trunk stability. SETTING: Canada, Vancouver. METHODS: Participants were from a convenience sample of 14 adults with SCI/D (age 21-63 y) which include those with lumbar to low cervical impairments currently exercising at least once per week using cardiovascular exercise equipment at our Physical Activity Research Centre. The interventions were non-randomized steady-state exercise bouts at self-selected low and moderate workloads on the AROW and ACE for 5 min each. Our primary outcomes were the rate of oxygen consumption (mL/kg/min) and the Borg 0-10 Rating Scale of Perceived Exertion (RPE). RESULTS: A repeated measures two-way ANOVA (p < 0.05) indicated that exercising on the AROW resulted significantly greater oxygen consumption and perceived exertion than ACE at similar sub-maximal workloads which may be explained by the differences in efficiency between the devices (Partial eta squared = 0.84, F stat = 48.25; Partial eta squared = 0.86, F stat = 53.54). CONCLUSIONS: We have demonstrated that this form of upper extremity exercise had a greater RPE and VO2 on the ACE at a given workload. Thus, the AROW could provide a functional upper extremity workout that can be used for daily exercise for those with varying levels of SCI.


Asunto(s)
Ejercicio Físico , Traumatismos de la Médula Espinal , Adulto , Brazo/fisiología , Ergometría , Ejercicio Físico/fisiología , Prueba de Esfuerzo/métodos , Humanos , Persona de Mediana Edad , Consumo de Oxígeno/fisiología , Traumatismos de la Médula Espinal/terapia , Deportes Acuáticos/fisiología , Adulto Joven
15.
Artículo en Inglés | MEDLINE | ID: mdl-35089861

RESUMEN

The purpose of this study was to assess 1) how treadmill slope variance affected external power output (PO) and propulsion technique reliability; and 2) how PO is associated with propulsion technique. Eighteen individuals with spinal cord injury performed two wheelchair treadmill exercise blocks (0% and 1% treadmill slope, standardized velocity) twice on two separate days. PO, velocity, and 14 propulsion technique variables were measured. In a follow-up study, N = 29 performed wheelchair treadmill drag tests. Target and actual slope were documented and PO, intraclass correlation coefficients (ICC) and smallest detectable differences (SDD) were calculated. Within and between visits, the reliability study ICCs were perfect for velocity (1.0), weak for PO (0.33-0.46), and acceptable (>0.70) for five (0% slope) and 10 (1% slope) propulsion technique variables, resulting in SDDs of 35-196%. Measured PO explained 56-90% of the variance in key propulsion technique variables. In the follow-up, PO ICCs were weak (0.43) and SDDs high. Bias between target and actual slope appeared random. In conclusion, PO variability accounts for 50-90% of the variability in propulsion technique variables when speed and wheelchair set-up are held constant. Therefore, small differences in PO between interventions could mask the effect of the interventions on propulsion technique.


Asunto(s)
Traumatismos de la Médula Espinal , Silla de Ruedas , Fenómenos Biomecánicos , Prueba de Esfuerzo/métodos , Estudios de Seguimiento , Humanos , Reproducibilidad de los Resultados
16.
Disabil Rehabil ; 44(15): 3915-3924, 2022 07.
Artículo en Inglés | MEDLINE | ID: mdl-33730952

RESUMEN

PURPOSE: Arm crank ergometry and adaptive rowing are existing exercise options for wheelchairs users, but not commonly available. This study was conducted to explore exercise participation of wheelchair users, as well as the usability of the adaptive rowing ergometer (aROW) and arm crank ergometer (ACE). METHODS: This mixed-methods study used a concurrent triangulation design. Following completion of both exercise sessions (5 min each), participants (n = 14) with spinal cord injury/disease (SCI/D) completed the System Usability Scale (SUS), and a semi-structured interview. Participants were asked about the use of both exercise modalities, and general exercise participation. SUS data were analyzed using a paired sample t-test and qualitative data were analyzed through conventional content analysis. RESULTS: Wheelchair users exercised for improved physical and mental health, as well as for functional independence, and community participation; however, lack of accessible equipment was a prominent barrier. Both the aROW and ACE have high usability, but the aROW was perceived as more enjoyable and effective for cardiovascular exercise. CONCLUSIONS: The implementation of the aROW into community gyms has the potential to help close the existing gap in inclusive equipment and may help people with disabilities to be more fully included in their community and lead healthier lives.Implications for rehabilitationWheelchair users perceive exercise as a meaningful activity that enhances physical health and risk of disease, functional independence, community participation, and overall social and emotional health.The adapted rowing machine was perceived as highly usable and was felt to be more enjoyable and effective for cardiovascular exercise compared to traditional arm crank ergometers.The adaptive rower provides an additional accessible equipment option for wheelchair users to obtain effective cardiovascular exercise.More available equipment may increase community participation and promote inclusion for wheelchair users.


Asunto(s)
Personas con Discapacidad , Traumatismos de la Médula Espinal , Silla de Ruedas , Brazo , Ergometría , Humanos
17.
J Med Internet Res ; 23(7): e27064, 2021 07 06.
Artículo en Inglés | MEDLINE | ID: mdl-34255680

RESUMEN

BACKGROUND: Arthrogryposis multiplex congenita (AMC) is characterized by joint contractures and muscle weakness, which limit daily activities. Youths with AMC require frequent physical therapeutic follow-ups to limit the recurrence of contractures and maintain range of motion (ROM) and muscle strength; however, access to specialized care may be limited because of geographical distance. Telerehabilitation can offer a potential solution for delivering frequent follow-ups for youth with AMC, but research on the use of telerehabilitation in children with musculoskeletal disorders is scarce. OBJECTIVE: The study aims to evaluate the feasibility of delivering a home exercise program (HEP) by using telerehabilitation for youth with AMC. We also aim to explore the effectiveness of the HEP as a secondary aim. METHODS: Youths aged between 8 and 21 years with AMC were recruited at the Shriners Hospitals for Children-Canada. The participants completed baseline and post-HEP questionnaires (the Physical Activity Questionnaire for Adolescents, Pediatrics Outcomes Data Collection Instrument, and Adolescent and Pediatric Pain Tool), and clinicians assessed their active ROM using a virtual goniometer. Clinicians used the Goal Attainment Scale with the participants to identify individualized goals to develop a 12-week HEP and assess the achievement of these goals. Follow-ups were conducted every 3 weeks to adjust the HEP. Data on withdrawal rates and compliance to the HEP and follow-ups were collected to assess the feasibility of this approach. The interrater reliability of using a virtual goniometer was assessed using the intraclass correlation coefficient and associated 95% CI. Nonparametric tests were used to evaluate feasibility and explore the effectiveness of the HEP. RESULTS: Of the 11 youths who were recruited, 7 (median age: 16.9 years) completed the HEP. Of the 47 appointments scheduled, 5 had to be rescheduled in ≤24 hours. The participants performed their HEP 2.04 times per week (95% CI 1.25-4.08) and reported good satisfaction with the approach. A general intraclass correlation coefficient of 0.985 (95% CI 0.980-0.989) was found for the web-based ROM measurement. Individualized goals were related to pain management; endurance in writing, standing, or walking; sports; and daily activities. In total, 12 of the 15 goals set with the participants were achieved. Statistically significant improvements were observed in the pain and comfort domain of the Pediatrics Outcomes Data Collection Instrument (preintervention: median 71; 95% CI 34-100; postintervention: median 85; 95% CI 49-100; P=.08) and Physical Activity Questionnaire for Adolescents (preintervention: median 1.62; 95% CI 1.00-2.82; postintervention: median 2.32; 95% CI 1.00-3.45; P=.046). CONCLUSIONS: The remote delivery of an HEP for youth with AMC is feasible. Promising results were found for the effectiveness of the HEP in helping youths with AMC to achieve their goals. The next step will be to assess the effectiveness of this exercise intervention in a randomized controlled trial. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/18688.


Asunto(s)
Artrogriposis , Telerrehabilitación , Adolescente , Adulto , Niño , Terapia por Ejercicio , Humanos , Proyectos Piloto , Reproducibilidad de los Resultados , Adulto Joven
18.
Spinal Cord ; 59(6): 700-704, 2021 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-33828245

RESUMEN

Aging women face increased risks of both breast cancer and spinal cord injury (SCI). Unique treatment challenges for this population warrant consideration. Despite advances in breast cancer treatments, significant adverse health outcomes continue to occur. Cancer treatments can be detrimental to the quality of life of able-bodied women, but more so for women living with pre-existing SCI. The goal of this Perspective Paper is to inform rehabilitation professionals about the needs of women with SCI treated for breast cancer. Specific objectives were: (1) give an overview of breast cancer treatment-related adverse outcomes that need special attention in women with SCI; and (2) inspire researchers to study the consequences of breast cancer-related health conditions in women with SCI. We identified SCI-specific considerations for undergoing breast cancer surgery, chemotherapy, radiation and endocrine therapy. This paper attempts to raise awareness regarding these issues due to the lack of research attention they have received.


Asunto(s)
Neoplasias de la Mama , Traumatismos de la Médula Espinal , Neoplasias de la Mama/complicaciones , Neoplasias de la Mama/epidemiología , Neoplasias de la Mama/terapia , Femenino , Humanos , Evaluación de Resultado en la Atención de Salud , Calidad de Vida , Traumatismos de la Médula Espinal/complicaciones , Traumatismos de la Médula Espinal/epidemiología , Traumatismos de la Médula Espinal/terapia
19.
J Med Eng Technol ; 45(4): 249-257, 2021 May.
Artículo en Inglés | MEDLINE | ID: mdl-33769164

RESUMEN

Manual wheelchair users face a high prevalence of upper extremity pain and injuries associated with poor biomechanics and the relatively low mechanical efficiency of conventional push wheeling. Recently developed geared wheels, which permit the wheelchair user to propel forwards by pulling at the handrims using a 'rowing' motion, have been speculated to improve ergonomics and reduce operational energy costs. This study compared the gross mechanical efficiency (GME) and perceived exertion (RPE) of these geared wheels to standard wheelchair wheels after a motor skill-based training session was conducted to familiarise participants with using both wheels. Fourteen able-bodied males were enrolled in the study. A within-participants, repeated-measures design was used to assess oxygen uptake (VO2), respiratory exchange ratio (RER), energy expenditure (En) and RPE during 5-minute, steady-state wheeling trials. Total external power output (Pext) was obtained using a drag test protocol for comparison over En to determine GME ratio. Stroke frequency and movement pattern were assessed through video tracking and propulsion testing. Although geared wheels required fewer strokes, standard wheels resulted in significantly lower VO2, RPE and En (p ≤ 0.001). These findings suggest overall that standard wheels were more mechanically efficient, likely due to internal energy loss of the geared wheel system.


Asunto(s)
Silla de Ruedas , Brazo , Fenómenos Biomecánicos , Humanos , Masculino , Destreza Motora , Esfuerzo Físico
20.
Disabil Rehabil Assist Technol ; 16(8): 918-926, 2021 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-32275453

RESUMEN

BACKGROUND: Wheelchair users typically receive little training about wheelchair maintenance. Therefore, we developed a peer-led, manual wheelchair skills maintenance training programme, with the intention of evaluating its efficacy in a future experimental study. PURPOSE: The purpose of this feasibility study was to examine how well we were able to implement the training programme and to evaluate the feasibility of conducting a larger scale clinical trial. SETTING: Spinal cord injury research centre. PARTICIPANTS: Five mentors and fifteen mentees were recruited to complete this feasibility study. METHOD: We collected information about recruitment capability and sample characteristics, data collection procedure, acceptability of the training programme, resources required, and participants' responses to the intervention. Participants completed all the items and we had little missing data. Participants did not face any difficulty answering the questionnaires or performing the tests. Therefore, we could conclude data collection was feasible moving forward to perform larger efficacy trials. The acceptability of the wheelchair maintenance programme was more than 90%. There was a statistically significant improvement in wheelchair maintenance knowledge test and total rolling resistance. Confidence of mentees increased significantly after the training. Improvements in the 3-cone test and the 6-min push test results were not significant. CONCLUSIONS: If recruitment and scheduling challenges can be overcome, our data suggested that it is feasible to conduct a larger experimental study to test the efficacy of the programme.Implications for RehabilitationWheelchair maintenance skills are important to help wheelchair users keep their wheelchairs working safely and efficiently.The findings from this study suggest that a peer-led wheelchair maintenance training programme may improve participants' wheelchair maintenance knowledge and maintenance self-confidence.The study also suggests that a peer-led wheelchair maintenance training programme may decrease the rolling resistance of participants' wheelchairs.A larger clinical trial is needed to demonstrate the efficacy of this intervention authoritatively.


Asunto(s)
Traumatismos de la Médula Espinal , Silla de Ruedas , Estudios de Factibilidad , Humanos , Conocimiento , Encuestas y Cuestionarios
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