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1.
Dev Med Child Neurol ; 2024 Mar 16.
Artigo em Inglês | MEDLINE | ID: mdl-38491830

RESUMO

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.

2.
Am J Med Genet C Semin Med Genet ; 193(2): 139-146, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-37102433

RESUMO

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.


Assuntos
Anormalidades Múltiplas , Artrogripose , Humanos , Adulto , Estados Unidos , Artrogripose/diagnóstico , Saúde Mental , Estudos Transversais , Ansiedade/epidemiologia , Bem-Estar Psicológico
3.
Spinal Cord ; 60(8): 706-711, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35169302

RESUMO

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.


Assuntos
Traumatismos da Medula Espinal , Adolescente , Adulto , Canadá , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Qualidade de Vida , Traumatismos da Medula Espinal/reabilitação , Inquéritos e Questionários , Adulto Jovem
4.
Spinal Cord ; 60(8): 694-700, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35110695

RESUMO

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.


Assuntos
Exercício Físico , Traumatismos da Medula Espinal , Adulto , Braço/fisiologia , Ergometria , Exercício Físico/fisiologia , Teste de Esforço/métodos , Humanos , Pessoa de Meia-Idade , Consumo de Oxigênio/fisiologia , Traumatismos da Medula Espinal/terapia , Esportes Aquáticos/fisiologia , Adulto Jovem
5.
Spinal Cord ; 59(6): 700-704, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33828245

RESUMO

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.


Assuntos
Neoplasias da Mama , Traumatismos da Medula Espinal , Neoplasias da Mama/complicações , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/terapia , Feminino , Humanos , Avaliação de Resultados em Cuidados de Saúde , Qualidade de Vida , Traumatismos da Medula Espinal/complicações , Traumatismos da Medula Espinal/epidemiologia , Traumatismos da Medula Espinal/terapia
6.
J Med Internet Res ; 23(7): e27064, 2021 07 06.
Artigo em Inglês | MEDLINE | ID: mdl-34255680

RESUMO

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.


Assuntos
Artrogripose , Telerreabilitação , Adolescente , Adulto , Criança , Terapia por Exercício , Humanos , Projetos Piloto , Reprodutibilidade dos Testes , Adulto Jovem
7.
Arch Phys Med Rehabil ; 101(1): 1-10, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31493382

RESUMO

OBJECTIVE: To identify whether motor skill-based training improves wheeling biomechanics in older adults and whether transfer or retention occurs. DESIGN: Randomized controlled trial. SETTING: Human mobility laboratory. PARTICIPANTS: Able-bodied older adults 50 years and older deemed ready to participate in physical activity (N=34). INTERVENTION: Participants were randomized to 1 of 3 groups: experimental group with 6 motor skill-based training sessions, active control group with dose-matched uninstructed practice, and the inactive control group (no training or practice). The experimental group's training sessions consisted of two 5-minute blocks of wheelchair propulsion training, separated by a 5-minute break, for a total of 60 minutes of wheeling. Breaks included education and discussion related to wheelchair propulsion. Training focused on increasing push angle, decreasing push frequency, decreasing negative braking forces, and using a circular wheeling pattern with smooth pushes. MAIN OUTCOME MEASURES: Temporal spatial and kinetic variables (ie, push angle, push frequency, total and tangential forces, negative force) were evaluated during steady-state wheeling and biomechanical variables were assessed with the SmartWheel Clinical Protocol to identify transfer. RESULTS: The training group significantly increased push angle and decreased push frequency compared with the practice (P<.05) and control groups (P<.05), which were retained over time and transferred to overground wheeling on tile (P≤.05). The dose-matched practice group did not differ from the inactive control group for any variables (P>.05). CONCLUSIONS: Older adults improve select biomechanical variables following motor skill-based training, which are retained over time and transfer to overground wheeling. Participants in the active control group did not improve with uninstructed practice compared with the inactive control group.


Assuntos
Destreza Motora , Desempenho Psicomotor , Ensino , Cadeiras de Rodas , Idoso , Fenômenos Biomecânicos , Feminino , Humanos , Cinética , Masculino , Pessoa de Meia-Idade , Análise Espaço-Temporal , Fatores de Tempo
8.
Am J Med Genet C Semin Med Genet ; 181(3): 277-279, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31120641

RESUMO

The 1st international symposium on arthrogryposis (ISA) was held in 2007 in Birmingham, UK, to bring together a multinational group of experts in the field of arthrogryposis, patients and their families to discuss various aspects of care for individuals with Arthrogryposis Multiplex Congenita (AMC). These "lessons learnt" set the tone for the 2nd ISA held in Saint Petersburg, Russia in 2014. Clinical and research advances have recently been made in the field of arthrogryposis and were shared at the 3rd ISA, in Philadelphia, in 2018. Highlights of the 3ISA and future directions are presented.


Assuntos
Artrogripose/patologia , Humanos
9.
Am J Med Genet C Semin Med Genet ; 181(3): 469-473, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31260181

RESUMO

Individuals with Arthrogryposis Multiplex Congenita (AMC) are born with multiple joint contractures in multiple body areas, typically manifested as clubfeet, extended or flexed knees and/or elbows, and internal shoulder rotation, and clasped hands. They require multiple surgeries as children, but there is little data that reports their aging and future quality of life (QOL). This study describes the relationship between AMC-related surgically-managed joints in childhood and adulthood, and QOL as adults. Participants (n = 83) from 14 countries completed an online questionnaire followed by a telephone/Skype interview as adults. Data points collected regarding total number of surgeries, affected joints, country of origin, sex, age, and SF-36's Physical Capacity Score (PCS) for QOL were analyzed using a beta regression model to explore which factors may potentially influence adult QOL. The average number of surgeries per participant was 9.8, with at least 50% performed during childhood. 78, 45, and 31% of participants had foot, knee, and hip surgeries, respectively. The model demonstrated that knee and/or shoulder surgeries were more likely to have a negative correlation with PCS; elbow surgery, however, showed a positive correlation, as elbow function may impact independent function. However, future expansion of this data set to a longitudinal registry would provide better ongoing surgery-specific data.


Assuntos
Artrogripose/psicologia , Artrogripose/cirurgia , Articulações/cirurgia , Qualidade de Vida/psicologia , Adolescente , Adulto , Feminino , Humanos , Masculino , Inquéritos e Questionários , Adulto Jovem
10.
Am J Med Genet C Semin Med Genet ; 181(3): 436-453, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31347265

RESUMO

Clinical interventions and research have mostly focused on the orthopedic and genetic outcomes of individuals with arthrogryposis multiplex congenita (AMC), and although pain has gained recognition as an important issue experienced by individuals with AMC, it has received little attention within the AMC literature. The aims of this scoping review were to describe the pain experiences of children and adults with AMC, to identify pain assessment tools and management techniques, and document the impact of pain on participation in everyday activities among children and adults with AMC. A search of the literature was conducted in four search engines and identified a total of 89 articles. Once study eligibility was reviewed, 21 studies met the selection criteria and were included in this review. Pain appears to be more commonly experienced in adults with AMC compared with children with AMC, with individuals having undergone multiple corrective procedures self-reporting pain more often. In adult populations, musculoskeletal chronic pain is a significant problem, resulting in restrictions in activities of daily living, mobility, and participation. Researchers and clinicians must agree on the use of validated measures appropriate for evaluating pain in AMC and the use of appropriate pain management techniques to relieve pain. Pediatric studies should focus on determining how commonly pain is experienced in infants, children, and adolescents with AMC. Pain in adults with AMC should be acknowledged to offer proper client-centered interventions throughout the lifespan.


Assuntos
Artrogripose/complicações , Dor Musculoesquelética/etiologia , Atividades Cotidianas , Adulto , Criança , Humanos
11.
Am J Med Genet C Semin Med Genet ; 181(3): 385-392, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31397084

RESUMO

Arthrogryposis multiplex congenita (AMC) can be a perplexing diagnosis that consists of limited range of motion (ROM) and decreased muscle strength in multiple joints. The person with AMC often possesses a certain tenacity and "spunk" that assists them with adjusting and adapting to the realities of daily life. The rehabilitation process assists the individual with AMC in achieving and maintaining the maximal active and passive range of motion and strength in order to participate in activities of daily living (ADL) throughout the developmental stages. The result of this life-long process is greatly impacted by collaboration among the multidisciplinary teams. Ultimately, rehabilitation should focus on three levels of treatment: (a) body structure, (b) activity, and (c) participation. This article describes rehabilitation across the lifespan-focusing on the therapeutic needs in the infant, toddler, school age and teenage/adult years-while also highlighting opportunities for improvement.


Assuntos
Artrogripose/fisiopatologia , Artrogripose/reabilitação , Longevidade/fisiologia , Atividades Cotidianas , Humanos , Amplitude de Movimento Articular/fisiologia
12.
Am J Med Genet C Semin Med Genet ; 181(3): 454-460, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31099966

RESUMO

Arthrogryposis multiplex congenita (AMC) is considered a rare disorder resulting in multiple congenital contractures in two or more areas. Considerable literature is available on managing the contractures during an affected child's development but little information is available to those managing these ongoing issues in adulthood. Due to the heterogeneity etiological factors and presentation of AMC, and the small sample sizes of previous studies, it has been difficult to generalize results to the adult population. This current study presents the several steps taken to create an international AMC database for adults to populate with their own data over time. The methods included a scoping review of the literature for valid and reliable outcome measures used for AMC, a Delphi methodology to create the database with a team of clinicians, researchers and patients, a Beta testing of the database, and a final launch of the Adult AMC Registry. This registry includes 48 nonstandardized questions and 12 standardized questionnaires. It takes 35-45 min for a participant to complete. A shorter version will be created for participants to complete for years 2 and 3, followed by this longer version every 4 years. The protocol for referring English-speaking patients and access to the registry is provided. Data will be reviewed every year to ensure quality. The registry will be maintained for a minimum of 10 years and data will be comprehensively analyzed every 5 years. Our goal is to have 500 adults with AMC from around the world as participants.


Assuntos
Artrogripose/epidemiologia , Adulto , Humanos , Internet , Sistema de Registros , Inquéritos e Questionários
13.
Dev Med Child Neurol ; 2024 Apr 09.
Artigo em Inglês | MEDLINE | ID: mdl-38590274

RESUMO

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.

14.
Dev Med Child Neurol ; 2024 Apr 06.
Artigo em Inglês | MEDLINE | ID: mdl-38581247

RESUMO

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.

15.
J Med Syst ; 44(1): 26, 2019 Dec 11.
Artigo em Inglês | MEDLINE | ID: mdl-31828440

RESUMO

With decreasing inpatient lengths of stay following spinal cord injury (SCI), newly injured patients may be discharged into the community without the self-management skills needed to prevent secondary conditions. A mobile app was developed to facilitate self-management skills following SCI in the inpatient rehabilitation and early community settings. The objective of this study was to explore patients' perspectives on the usability of this self-management app. A mixed-methods study design was implemented. The app was trialed at a local rehabilitation centre with 20 inpatient participants who experienced a SCI. They received mobile app training sessions throughout their inpatient rehabilitation. A thematic analysis was performed on qualitative data from post-discharge exit questionnaires and researchers' field notes. Quantitative data (in the form of participants' tool usage data and self-reported system usability scale scores) were collected at discharge and 3 months post-discharge. Three main themes emerged from the qualitative analysis: (1) being accessible to users (i.e., being easy to adopt and compatible with assistive technologies), (2) being intuitive to navigate (i.e., incorporating a simple app layout and a system of alert notifications), and (3) offering users flexibility (i.e., providing users with control over their data). The mobile app received above average mean system usability scale scores, both at discharge (78.1/100) and 3 months post-discharge (71.6/100). Given that participants found the app acceptable for use in inpatient rehabilitation and following discharge into the community, further testing is warranted to explore its efficacy in preventing secondary complications.


Assuntos
Aplicativos Móveis , Autogestão/métodos , Traumatismos da Medula Espinal/reabilitação , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
16.
J Med Syst ; 43(6): 145, 2019 Apr 22.
Artigo em Inglês | MEDLINE | ID: mdl-31011881

RESUMO

With decreasing inpatient rehabilitation lengths of stay, there may be a greater risk of spinal cord injury (SCI) populations being discharged into the community without the self-management skills needed to prevent secondary complications. Recent advancements in mobile health has made mobile apps a feasible method of delivering population-based, self-management interventions to address SCI-specific secondary complications. The objective of this study is to describe stakeholder perspectives on the development of a functional mobile app to facilitate self-management skills needed to prevent secondary complications following recent SCI during inpatient rehabilitation. A user-centered design approach was used that involved an evolving mobile app and the collection of prospective qualitative data. Stakeholders from three groups were enrolled in the study: individuals admitted for rehabilitation following SCI (n = 20) and informal (n = 7) and formal (n = 48) caregivers. Iterative feedback was gathered from rehabilitation inpatients during ongoing interactions and via post-discharge exit questionnaires, from informal caregivers via one-on-one interviews, and from formal caregivers via series of focus groups at various phases throughout the design process. Three main themes emerged from the analysis: (1) being individualized and user friendly (i.e., developing an app that is simple and easy to use to facilitate universal uptake), (2) targeting goals to promote self-management (i.e., adopting self-management skills relative to personal goals and confidence), and (3) increasing participation and support-seeking to facilitate lifestyle change (i.e., encouraging leisure activities to facilitate community integration). Key stakeholder perspectives contributed to the development of a self-management mobile app that will be evaluated in future research.


Assuntos
Aplicativos Móveis , Autogestão/métodos , Traumatismos da Medula Espinal/reabilitação , Adulto , Objetivos , Humanos , Entrevistas como Assunto , Estilo de Vida , Pessoa de Meia-Idade , Estudos Prospectivos , Prevenção Secundária/métodos , Autoimagem , Telemedicina , Interface Usuário-Computador , Adulto Jovem
17.
Arch Phys Med Rehabil ; 99(7): 1295-1302.e9, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29305847

RESUMO

OBJECTIVE: To test the hypothesis that caregivers enhance the wheelchair skills capacity and confidence of the power wheelchair users to whom they provide assistance, and to describe the nature of that assistance. DESIGN: Multicenter cross-sectional study. SETTING: Rehabilitation centers and communities. PARTICIPANTS: Participants (N=152) included caregivers (n=76) and wheelchair users (n=76). INTERVENTIONS: None. MAIN OUTCOME MEASURES: Version 4.3 of the Wheelchair Skills Test (WST) and the Wheelchair Skills Test-Questionnaire (WST-Q). For each of the 30 individual skills, we recorded data about the wheelchair user alone and in combination (blended) with the caregiver. RESULTS: The mean total WST capacity scores ± SD for the wheelchair users alone and blended were 78.1%±9.3% and 92.4%±6.1%, respectively, with a mean difference of 14.3%±8.7% (P<.0001). The mean WST-Q capacity scores ± SD were 77.0%±10.6% and 93.2%±6.4%, respectively, with a mean difference of 16.3%±9.8% (P<.0001). The mean WST-Q confidence scores ± SD were 75.5%±12.7% and 92.8%±6.8%, respectively, with a mean difference of 17.5%±11.7% (P<.0001). The mean differences corresponded to relative improvements of 18.3%, 21.0%, and 22.9%, respectively. The nature and benefits of the caregivers' assistance could be summarized in 7 themes (eg, caregiver provides verbal support [cueing, coaching, reporting about the environment]). CONCLUSIONS: Caregivers significantly enhance the wheelchair skills capacity and confidence of the power wheelchair users to whom they provide assistance, and they do so in a variety of ways. These findings have significance for wheelchair skills assessment and training.


Assuntos
Cuidadores/psicologia , Pessoas com Deficiência/psicologia , Autoimagem , Cadeiras de Rodas/psicologia , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Centros de Reabilitação , Inquéritos e Questionários
18.
Am J Med Genet A ; 173(5): 1270-1278, 2017 May.
Artigo em Inglês | MEDLINE | ID: mdl-28374968

RESUMO

Arthrogryposis multiplex congenita (AMC) is a birth defect that involves congenital joint contractures in two or more joints including the limbs, spine, and jaw. The purpose of our study was to identify long-term outcomes of adults with AMC. We recruited 177 participants from over 15 countries, making this the largest international study of adults with AMC. Participants provided demographic information including living situation and mobility and completed two standardized outcome measures, of quality of life and physical activity, using an online survey format. The data were compiled and descriptive analyses were performed. The study group consisted of 72% females and a mean age of 39 years. Over 90% of participants had upper and lower limb involvement, 35% had scoliosis or lordosis while 16% had jaw problems. Participants had an average of nine (0-70) surgeries at the time of the study. The majority (75%) of respondents lived independently of family members (on their own or with a partner). Participants were nearly three times more likely to have a graduate degree than the general US population. Participants reported lower physical function scores than the general US population; however, they reported similar or higher scores for the other quality of life domains of the SF-36. They were considerably less physically active than able-bodied individuals. Half of participants experienced chronic back pain and 60% reported joint pain. Additionally, almost half of the participants took regular pain medications.


Assuntos
Artrogripose/epidemiologia , Artrogripose/fisiopatologia , Dor nas Costas/fisiopatologia , Articulações/fisiopatologia , Adulto , Idoso , Artrogripose/complicações , Dor nas Costas/complicações , Exercício Físico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Estados Unidos/epidemiologia
20.
Ergonomics ; 59(2): 291-7, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-26218859

RESUMO

This study examined the effect of age on sub-maximal wheelchair propulsion efficiency and sprint power output (SPO) in inexperienced able-bodied males. Two age groups were used for this study: a younger adult group (N = 10; mean age 24.8 ± 3.0 years) and an older adult group (N = 8; mean age 70.9 ± 5.2 years). No one had prior manual wheelchair experience. The primary outcome measures were gross mechanical efficiency (GME), mechanical effectiveness (ME) during sub-maximal treadmill wheeling and SPO during a max sprint test. There were no significant differences in GME; however, there was a significant difference in ME [0.74 ± 0.12 and 0.62 ± 0.08 (p = 0.007)] and sprint test [SPO = 224.66 ± 79.25 and 125.98 ± 53.02 (W) (p = 0.008)], for younger and older adults, respectively. Healthy, active older individuals can have a physiological capacity similar to younger populations to wheel sub-maximally, but their ME and lower SPO reduce the ability to propel manual wheelchairs during maximal wheeling. PRACTITIONER SUMMARY: Understanding the potential for older adults to propel wheelchairs is important as the population ages with disabilities. This study demonstrated significantly lower ME but not GME in older versus younger adult populations. Strength training may be needed to keep older adults active in manual wheelchairs.


Assuntos
Fatores Etários , Teste de Esforço , Sistemas Homem-Máquina , Análise e Desempenho de Tarefas , Cadeiras de Rodas , Aceleração , Adulto , Idoso , Idoso de 80 Anos ou mais , Envelhecimento/fisiologia , Fenômenos Biomecânicos , Pessoas com Deficiência , Humanos , Masculino , Adulto Jovem
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