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1.
Arch Rehabil Res Clin Transl ; 6(1): 100316, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38482107

RESUMO

Objective: To determine the feasibility of a self-directed training protocol to promote actual arm use in everyday life. The secondary aim was to explore the initial efficacy on upper extremity (UE) outcome measures. Design: Feasibility study using multiple methods. Setting: Home and outpatient research lab. Participants: Fifteen adults (6 women, 9 men, mean age=53.08 years) with chronic stroke living in the community. There was wide range of UE functional levels, ranging from dependent stabilizer (limited function) to functional assist (high function). Intervention: Use My Arm-Remote protocol. Phase 1 consisted of clinician training on motivational interviewing (MI). Phase 2 consisted of MI sessions with participants to determine participant generated goals, training activities, and training schedules. Phase 3 consisted of UE task-oriented training (60 minutes/day, 5 days/week, for 4 weeks). Participants received daily surveys through an app to monitor arm training behavior and weekly virtual check-ins with clinicians to problem-solve challenges and adjust treatment plans. Outcome Measures: Primary outcome measures were feasibility domains after intervention, measured by quantitative study data and qualitative semi-structured interviews. Secondary outcomes included the Canadian Occupational Performance Measure (COPM), Motor Activity Log (MAL), Fugl-Meyer Assessment (FMA), and accelerometry-based duration of use metric measured at baseline, discharge, and 4-week follow-up. Results: The UMA-R was feasible in the following domains: recruitment rate, retention rate, intervention acceptance, intervention delivery, adherence frequency, and safety. Adherence to duration of daily practice did not meet our criteria. Improvements in UE outcomes were achieved at discharge and maintained at follow-up as measured by COPM-Performance subscale (F[1.42, 19.83]=17.72, P<.001) and COPM-Satisfaction subscale (F[2, 28]=14.73, P<.001), MAL (F[1.31, 18.30]=12.05, P<.01) and the FMA (F[2, 28]=16.62, P<.001). Conclusion: The UMA-R was feasible and safe to implement for individuals living in the community with chronic stroke. Adherence duration was identified as area of refinement. Participants demonstrated improvements in standardized UE outcomes to support initial efficacy of the UMA-R. Shared decision-making and behavior change frameworks can support the implementation of UE self-directed rehabilitation. Our results warrant the refinement and further testing of the UMA-R.

2.
ACR Open Rheumatol ; 6(1): 21-30, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37964675

RESUMO

OBJECTIVE: Cognitive impairment (CI) in systemic lupus erythematosus (SLE) negatively impacts health-related quality of life leading to activity limitations. This qualitative study aimed to (1) explore the effect of SLE-related CI on activities of daily living and life role participation and (2) describe factors influencing activity restriction and life role participation. METHODS: Semistructured, in-depth interviews of lived experience of CI in SLE were conducted with 24 participants with SLE. Sociodemographic and clinical data, and objective and subjective cognitive function, were collected to characterize participants. A qualitative thematic content analysis was undertaken guided by a framework analytical approach. RESULTS: Participants reported problems in multiple cognitive domains, with multiple perceived causes. CI was felt to impact work, social, domestic, and family life, health, and independence. Five overarching themes were represented in the data: (1) characterization of SLE-reported CI, (2) perceived cause of CI, (3) perceived impact of CI on activities of daily living and life role participation, (4) adaptations for managing CI, and (5) influence of CI adaptations on activities of daily living and life role participation. CONCLUSION: This study provides a better understanding of the patient experience of CI in SLE, how it impacts their lives, and what coping strategies they employ. It highlights the long-term challenges those with CI in SLE undergo and provides evidence for the urgent need to implement multidisciplinary treatment options. When managing CI, it may be beneficial to evaluate and understand available psychosocial support resources to help identify and reinforce relevant adaptations to improve health-related quality of life.

3.
Am J Occup Ther ; 77(6)2023 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-38015490

RESUMO

IMPORTANCE: This study provides information to clinicians about how persons with MS coped in both positive and negative ways during a potentially traumatic experience (the coronavirus disease 2019 [COVID-19] pandemic), which will help clinicians to provide better services to this population in the face of stressful events. OBJECTIVE: To describe both positive and negative outcomes among persons with multiple sclerosis (MS) and to examine whether resilience and social support were related to positive and negative outcomes during the peak of the pandemic. DESIGN: An online survey administered during the COVID-19 pandemic. PARTICIPANTS: Participants were 74 individuals with MS and 104 healthy controls (HCs) recruited through social media and community support groups. OUTCOMES AND MEASURES: The survey included questionnaires that assessed both positive and negative responses to the pandemic, including benefit finding, loneliness, and distress. Resilience and social support were also assessed. RESULTS: Differences were noted between persons with MS and HCs on negative but not positive outcomes. Better social support and resilience were related to positive outcomes. CONCLUSIONS AND RELEVANCE: Both persons with MS and HCs were similar in benefit finding and stress management. However, negative outcomes were worse in the MS group. Our findings shed light on the importance of individuals with MS adopting a positive outlook to help during times of adversity. What This Article Adds: Among persons with disabilities such as multiple sclerosis, finding benefits during stressful times can be a potential coping mechanism. Furthermore, resilience and social support should be taken into account to moderate the effects of adverse events.


Assuntos
COVID-19 , Esclerose Múltipla , Humanos , Pandemias , Apoio Social , Adaptação Psicológica
4.
Contemp Clin Trials ; 134: 107331, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37734538

RESUMO

This paper describes the protocol for a Phase I/II, parallel-group, blinded randomized controlled trial that compares the effects of 12-weeks of combined learning and memory rehabilitation with either aerobic cycling exercise or stretching on cognitive, neuroimaging, and everyday life outcomes in 60 persons with moderate-to-severe traumatic brain injury (TBI) who demonstrate impairments in new learning. Briefly, participants will undergo baseline testing consisting of neuropsychological testing, neuroimaging, daily life measures, and cardiorespiratory fitness. Following baseline testing, participants will be randomized to one of 2 conditions (30 participants per condition) using concealed allocation. Participants will be masked as to the intent of the conditions. The conditions will both involve supervised administration of an enhanced, 8-week version of the Kessler Foundation modified Story Memory Technique, embedded within either 12-weeks of supervised and progressive aerobic cycling exercise training (experimental condition) or 12-weeks of supervised stretching-and-toning (active control condition). Following the 12-week intervention period, participants will complete the same measures as at baseline that will be administered by treatment-blinded assessors. The primary study outcome is new learning and memory impairment based on California Verbal Learning Test (CVLT)-III slope, the secondary outcomes include neuroimaging measures of hippocampal volume, activation, and connectivity, and the tertiary outcomes involve measures of daily living along with other cognitive outcomes. We further will collect baseline sociodemographic data for examining predictors of response heterogeneity. If successful, this trial will provide the first Class I evidence supporting combined memory rehabilitation and aerobic cycling exercise training for treating TBI-related new learning and memory impairment.


Assuntos
Lesões Encefálicas Traumáticas , Treino Cognitivo , Humanos , Exercício Físico , Lesões Encefálicas Traumáticas/psicologia , Terapia por Exercício/métodos , Memória , Resultado do Tratamento , Ensaios Clínicos Controlados Aleatórios como Assunto , Ensaios Clínicos Fase I como Assunto
6.
Mult Scler ; 29(9): 1107-1117, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37496331

RESUMO

BACKGROUND: There is considerable evidence that persons with multiple sclerosis (PwMS) who experience cognitive impairments (CIs) are at risk of having significant limitations in activities of daily living (ADLs). However, ADL assessment often consists of proxies or self-report of ADLs. This study examined whether the performance of instrumental ADLs (I-ADL) is impaired in PwMS with and without CI. METHODS: Participants included 72 PwMS and 48 matched healthy controls (HCs). PwMS were divided into MS-CI (n = 25) and MS-not-impaired (n = 47) groups based on the Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS) scores. All participants performed the Actual RealityTM (AR) test, measuring I-ADL using authentic websites. RESULTS: The MS-CI performed significantly worse on AR compared with HC and MS-not-impaired. In addition, the MS-not-impaired performed significantly worse than HC on AR. AR differentiates well between PwMS with and without CI. CONCLUSIONS: While CI in MS results in significant limitations in the performance of I-ADL, PwMS who do not show evidence of CI can have limitations in I-ADL. AR assessment is a valid and reliable tool sensitive to CI. It should be used in addition to traditional cognitive assessments to detect early functional deterioration through the course of MS.


Assuntos
Disfunção Cognitiva , Esclerose Múltipla , Humanos , Atividades Cotidianas , Testes Neuropsicológicos , Disfunção Cognitiva/etiologia , Disfunção Cognitiva/diagnóstico , Autorrelato
7.
Contemp Clin Trials Commun ; 33: 101112, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37113325

RESUMO

Background: Half of all stroke survivors experience hemiparesis on the contralateral side, resulting in chronic upper extremity (UE) impairment. Remote rehabilitation is a promising approach to optimize the gains made in the clinic to maximize function and promote UE use at home. This paper describes the study protocol for a remote home-based UE self-training program. Design: This was a feasibility study that used a convergent mixed methods approach. Methods: We collected data on 15 community-dwelling individuals with UE hemiparesis after stroke. The study used motivational interviewing (MI) and ecological momentary assessments (EMA) to maximize engagement in a 4-week personalized UE self-training program. The study consisted of three phases: 1) training in MI for the interventionists 2) creating customized treatment plans using shared decision making, and 3) four weeks of UE self-training. Measures and analysis: To evaluate feasibility, we will summarize recruitment and retention rates, intervention delivery, acceptance, adherence, and safety. Quantitative UE outcomes will measure change in UE status after the intervention (Fugl-Meyer Assessment, Motor Activity Log, Canadian Occupational Performance Measure, and bilateral magnitude ratio). Qualitative data (1:1 semi-structured interviews) will capture participants' perceptions and experience with the intervention. Quantitative and qualitative data will be integrated to gain a deeper understanding of the facilitators and barriers for engagement and adherence to UE self-training. Conclusion: The results of this study will advance the scientific knowledge for use of MI and EMA as methods for enhancing adherence and engagement in UE self-training in stroke rehabilitation. The ultimate impact of this research will be to improve UE recovery for individuals with stroke transitioning back into community. Clinical trials registration: NCT05032638.

8.
Brain Inj ; 37(7): 621-627, 2023 06 07.
Artigo em Inglês | MEDLINE | ID: mdl-36879491

RESUMO

PRIMARY OBJECTIVE: Examine the impact of four personal protective factors (self-awareness (SA), self-efficacy (SE), cognitive and emotional factors) on positive adaptation, or resiliency, in persons with traumatic brain injury (TBI). We hypothesized that people with better SA and cognitive skills, less depression and positive SE will report better quality of life (QOL). RESEARCH DESIGN: Correlational longitudinal design was used to explore relationships between outcome variables at initial evaluation and 6-months following initial evaluation. METHODS AND PROCEDURES: 38 community-dwelling adults at least 1 year after sustaining a moderate-to-severe TBI were administered the Self-Efficacy Scale, Awareness Questionnaire, Chicago Multiscale Depression Inventory, Symbol Digit Modalities Test, and SF-12. MAIN OUTCOME AND RESULTS: Higher rated SE and emotional functioning correlated with better QOL indicating SE and emotional functioning may be personal factors facilitating positive adaptation in persons with TBI. Interestingly, poorer cognitive functioning (i.e. processing speed) and lower SA correlated with better QOL. Additionally, cognitive and emotional functioning were significant predictors of QOL. CONCLUSION: Strengthening emotional functioning and SE may improve outcomes after TBI. However, it may be that self-reported QoL is a poor outcome for people with TBI and measurement in future studies and practice should focus on actual engagement of activities.


Assuntos
Lesões Encefálicas Traumáticas , Qualidade de Vida , Adulto , Humanos , Qualidade de Vida/psicologia , Fatores de Proteção , Lesões Encefálicas Traumáticas/psicologia , Cognição , Emoções
9.
Arch Phys Med Rehabil ; 104(6): 925-931, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36758712

RESUMO

OBJECTIVE: To examine the efficacy of Speed of Processing Training (SOPT) in improving everyday functional outcomes in persons with multiple sclerosis (MS). DESIGN: Randomized controlled trial. SETTING: A nonprofit rehabilitation research institution and the community. PARTICIPANTS: In total, 60 participants with MS with impaired processing speed were randomly assigned to SOPT (n=33) or an active control group (n=27). INTERVENTION: SOPT, a restorative computerized cognitive intervention involving 10 treatment sessions consisting of visual tasks designed to improve speed and accuracy of information processing MAIN OUTCOME MEASURES: Outcomes included performance on the Timed Instrumental Activities of Daily Living (TIADL) and self-report of functional behavior, quality of life, and affect. RESULTS: The treatment group showed improvement in the total TIADL score and 2 subtests compared with the active control group. Participants in the treatment group who demonstrated improved cognitive performance after the intervention also showed improved performance on one TIADL subtest. Quality of life, affective symptomatology, and self-reported functional status were not changed after the intervention. CONCLUSIONS: Improvement in underlying cognitive or perceptual deficits is thought to promote recovery and everyday performance as per the restorative approach to cognitive rehabilitation. However, this study showed only selected improvements in everyday functional outcomes for persons with MS.


Assuntos
Atividades Cotidianas , Terapia Ocupacional , Humanos , Atividades Cotidianas/psicologia , Qualidade de Vida , Cognição , Velocidade de Processamento
10.
Ann Phys Rehabil Med ; 66(3): 101677, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-35667625

RESUMO

Cognitive impairment (CI) has been recognized as one of the core multiple sclerosis (MS) symptoms that profoundly impact lives of people with MS (PwMS). Clinical trials have begun to focus on cognition as a primary or secondary outcome, but translating improvements in cognitive testing scores to functioning in the real world is difficult. Performance-based functional assessments and virtual reality (VR) assessments, which incorporate real-world challenges, have been proposed as a way to better assess functional cognition (i.e., cognitive performance and its impact on real-life cognitive functioning of PwMS) and could address the difficulty in evaluating the impact of a treatment on real-world functioning. In this narrative review, we identify and summarize some of the promising recent research applications of performance-based functional assessments and VR tools to assess functional cognition in MS. Overall, most of the studies suggest that functional and VR assessments can detect cognitive differences between people with and without MS and between PwMS with and without CI. Furthermore, performance on some of the functional and VR assessments was associated with performance on standard cognitive assessments. However, developing any guidelines on how to implement these assessments in clinical practice is difficult because of the relatively small sample size across these studies. Performance-based functional and VR assessments represent an innovative approach to increasing sensitivity of how cognitive impairments/abilities present in the daily life of PwMS. More studies, with a larger sample size, robust research methods, and pre- and post-treatment assessments, are warranted to validate relevant, accessible functional and VR assessments before implementing these assessment approaches in clinical practice.


Assuntos
Disfunção Cognitiva , Esclerose Múltipla , Realidade Virtual , Humanos , Esclerose Múltipla/complicações , Cognição , Testes Neuropsicológicos , Disfunção Cognitiva/etiologia
11.
Front Rehabil Sci ; 3: 1005025, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36466937

RESUMO

Background: Driving is associated with independence, well-being, quality of life, and an active lifestyle. Driving requires cognitive, motor, and visual skills, including self-awareness and processing speed. This study examines whether driver self-awareness, motor processing speed, and cognitive processing speed can predict fitness to drive among individuals referred to occupational therapy evaluation due to concerns about their driving ability. Method: In this cross-sectional study, 39 participants were referred to off- and on-road driving evaluation to determine their fitness to drive due to changes in health status, advanced age, license renewal requirement, or prior automobile accidents. A registered occupational therapist (OT) classified 23 of the participants as fit to drive and 16 as unfit to drive. Motor and cognitive processing speed were assessed by the Stationary Perception-Reaction Timer and the Color Trails Test, respectively. Driving self-awareness was assessed by comparing the DI and OT evaluations to the participants' estimation of their own on-road driving performance. Results: The fit-to-drive participants had a better motor and cognitive processing speed than those unfit-to-drive. The unfit-to-drive group overestimated their driving ability, whereas the fit-to-drive group accurately or almost accurately estimated their driving ability. Driving self-awareness was a significant predictor of participants' fitness to drive. Conclusions: This study demonstrates the importance of self-awareness for predicting fitness to drive among people at risk for compromised driving skills. Thus, driving self-awareness should be addressed as part of fitness-to-drive evaluations and interventions.

12.
Contemp Clin Trials Commun ; 30: 101026, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36387993

RESUMO

New learning and memory impairments are common in Multiple Sclerosis (MS) and negatively impact everyday life, including occupational and social functioning. Despite the demand for learning and memory treatments, few cognitive rehabilitation protocols are supported by Class I research evidence, limiting the degree to which effective treatments may be utilized with persons with MS. The present double-blind, placebo controlled randomized clinical trial (RCT) examines the efficacy of an 8-session cognitive rehabilitation protocol encompassing training in the application of three strategies with the strongest empirical evidence (self-generation, spaced learning and retrieval practice) to treat impaired learning and memory in persons with MS, Kessler Foundation Strategy-based Training to Enhance Memory (KF-STEM™). A sample of 120 participants with clinically definite MS who have impairments in new learning and memory will be enrolled. Outcomes will be assessed via three mechanisms, an Assessment of Global Functioning, which examines everyday functioning and quality of life, a Neuropsychological Evaluation to examine objective cognitive performance, and functional Magnetic Resonance Imaging to examine the impact of treatment on patterns of cerebral activation. We will additionally evaluate the longer-term efficacy of KF-STEM™ on everyday functioning and neuropsychological assessment through a 6-month follow-up evaluation and evaluate the impact of booster sessions in maintaining the treatment effect over time. The methodologically rigorous design of the current study will provide Class I evidence for the KF-STEM™ treatment protocol for persons with MS.

13.
Neuropsychol Rehabil ; 32(8): 1676-1725, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-35583377

RESUMO

This study aimed to (1) describe the scope of research related to the Dynamic Comprehensive Model of Awareness (DCMA) (Toglia & Kirk, 2000); (2) identify themes and support for key model postulates; and (3) suggest future research directions related to this model. Using PRISMA scoping guidelines, 366 articles were reviewed, and 54 articles met our inclusion criteria. Selected studies were clustered into three themes: (1) the relationship between general and online self-awareness (50%); (2) interventions based on the model (41%); and (3) factors contributing to self-awareness (9%). Most studies were conducted with participants with acquired brain injury (BI) and traumatic BI (68%), most used a cross-sectional design (50%), and most intervention studies utilized a single-subject design (18%), followed by an experimental design (9%). This review provides evidence for the wide application of the DCMA across varying ages and populations. The need for a multidimensional assessment approach is recognized; however, stronger evidence that supports a uniform assessment of online self-awareness is needed. The intervention studies frequently described the importance of direct experience in developing self-awareness; however, few studies compared how intervention methods to influence general versus online self-awareness, or how cognitive capacity, self-efficacy, psychological factors, and context, influence the development of self-awareness.


Assuntos
Lesões Encefálicas Traumáticas , Lesões Encefálicas , Estudos Transversais , Humanos , Maleatos , Percepção
14.
Mult Scler Relat Disord ; 57: 103339, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-35158428

RESUMO

BACKGROUND: The COVID-19 pandemic provided a unique opportunity to explore the impact of the mandated lockdown and social distancing policies on engagement in daily occupations for individuals with multiple sclerosis (MS) and able bodied (i.e. healthy) adults. The study also examined whether the changes in daily occupations were associated with health-related quality of life (HrQOL). METHODS: Between the spring and early fall of 2020, 69 persons with MS and 95 healthy adults completed an online survey that included measurements of 26 activities of daily life. For each activity, participants reported whether they continued to perform the activity (with or without adjustments), whether they stopped, or started to perform the activity during the pandemic. Social support, HrQOL, and demographics, including financial distress were also obtained. RESULTS: Participants with MS and healthy adults both reduced the number of activities performed during the pandemic. Healthy adults continued to do more activities with and without adjustments compared with participants with MS. In both groups, better HrQOL was associated with the number of activities participants continued to do with and without adjustments, and worse HrQOL with the number of activities they stopped doing. CONCLUSIONS: Fewer persons with MS engaged in everyday occupations than healthy adults following the COVID-19 pandemic. The ability to maintain occupational engagement and to participate in social and daily activities is important for maintaining high HrQOL in both groups. Thus, these results call for attention in treatment and self-management of MS symptomatology.


Assuntos
COVID-19 , Esclerose Múltipla , Adulto , Controle de Doenças Transmissíveis , Humanos , Esclerose Múltipla/epidemiologia , Ocupações , Pandemias , Qualidade de Vida , SARS-CoV-2
15.
Brain Inj ; 36(2): 183-190, 2022 01 28.
Artigo em Inglês | MEDLINE | ID: mdl-35213287

RESUMO

PRIMARY OBJECTIVES: This study examined (a) the impact of coronavirus disease-2019 (COVID-19) pandemic on engagement in activity participation in persons with acquired brain injury (ABI); and (b) whether changes in activity participation during the pandemic were associated participants' health-related quality of life (HRQoL). RESEARCH DESIGN: Exploratory online survey study. METHODS: Eighty-seven respondents with ABI and 98 healthy adults (HA) participated in this study. Engagement in activity participation during COVID-19 was calculated as a percentage of the activities participants performed before the pandemic. MAIN RESULTS: Participants with ABI modified their activities less than HA in order to maintain level of engagement in activity participation. They stopped performing more activities during the pandemic compared to HA and compared to their pre-pandemic engagement. Both groups continued to do similar percentage of activities without modifications compared to before the pandemic. Better HRQoL in both groups was predicted by a larger percentage of activities continued and fewer activities stopped. CONCLUSION: Results emphasize the importance of addressing activity participation changes during situations where there are disruptions of the individual's habits and routines in order to minimize negative consequences of such changes.


Assuntos
Lesões Encefálicas , COVID-19 , Atividades Cotidianas , Adulto , COVID-19/epidemiologia , Humanos , Pandemias , Qualidade de Vida , SARS-CoV-2
16.
Arch Phys Med Rehabil ; 103(7): 1379-1386, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35093328

RESUMO

OBJECTIVE: The current study examined health care disruptions and use of telehealth services among people with multiple sclerosis (pwMS) during the COVID-19 pandemic. DESIGN: Cross-sectional survey. SETTING: General community. PARTICIPANTS: Participants (N=163) included 70 pwMS and 93 healthy controls (HCs). The majority of respondents were from the United States (88%). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Rates of health care disruptions (eg, missing/canceling appointments, experiencing delays) and telehealth use for MS and non-MS medical care and mental health care. RESULTS: In this U.S. majority, predominantly White, and high socioeconomic status sample, 38% to 50% of pwMS reported experiencing disruptions in their MS and non-MS medical care and 20% to 33% reported disruptions in their mental health care; this was significantly lower than the rates observed among HCs. Compared with HCs, pwMS were more likely to use telehealth than in-person services, especially for mental health care. The majority of pwMS and HCs reported being satisfied with telehealth services. Individuals with higher degrees of functional limitation experienced more health care disruptions and were more likely to use telehealth services than individuals with lower degrees of functional limitation. CONCLUSIONS: Despite high health care disruption rates, pwMS frequently used and were highly satisfied with telehealth services during the COVID-19 pandemic. Due to physical limitations commonly observed in the MS population that may preclude travel, telehealth services should be continued even after resolution of the pandemic to expand access and reduce health care disparities.


Assuntos
COVID-19 , Esclerose Múltipla , Telemedicina , COVID-19/epidemiologia , Estudos Transversais , Disparidades em Assistência à Saúde , Humanos , Pandemias , Estados Unidos
17.
Arch Rehabil Res Clin Transl ; 4(1): 100176, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34934940

RESUMO

OBJECTIVE: To delineate health care disruption for individuals with acquired brain injury (ABI) during the peak of the pandemic and to understand the impact of health care disruption on health-related quality of life (HRQoL). DESIGN: Cross-sectional survey. SETTING: General community. PARTICIPANTS: Volunteer sample of adults with traumatic brain injury (TBI; n=33), adults with stroke (n=66), and adults without TBI or stroke (n=108) with access to the internet and personal technology (N=207). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Not applicable. RESULTS: Participants with TBI and stroke reported high rates of disruption in care specific to their diagnosis (53%-54.5%), while participants across all groups reported disruption for major medical care (range, 68.2%-80%), general health care (range, 60.3%-72.4%), and mental health care (range, 31.8%-83.3%). During the pandemic, participants with TBI and stroke used telehealth for care specific to their diagnosis (40.9%-42.4%), whereas all participants used telehealth for major medical care (range, 50%-86.7%), general health care (range, 31.2%-53.3%), and mental health care (range, 53.8%-72.7%). Disruption in TBI or stroke care and type of ABI explained 27.1% of the variance in HRQoL scores (F2,95=16.82, P<.001, R 2=0.262), and disruption in mental health care explained 14.8% of the variance (F1,51=8.86, P=.004, R 2=0.148). CONCLUSIONS: Individuals with and without ABI experienced pronounced disruption in health care utilization overall. However, individuals who experienced a disruption in care specific to TBI or mental health care were most vulnerable to decreased HRQoL. Telehealth was a viable alternative to in-person visits for individuals with and without ABI, but limitations included difficulty with technology, difficulty with comprehensive examination, and decreased rapport with providers.

18.
Eur J Neurol ; 28(5): 1627-1635, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33527564

RESUMO

BACKGROUND AND OBJECTIVES: Deficits in self-awareness can be observed in persons with multiple sclerosis (pwMS). The present study aimed to investigate two types of self-awareness (intellectual and online) among pwMS, which will inform clinical care. Intellectual awareness refers to knowledge of one's own abilities; online awareness refers to real-time monitoring and regulation of one's performance. METHODS: The study sample consisted of 95 pwMS and 65 healthy controls (HCs). Intellectual awareness was defined as discrepancy between participant's and informant's reports of participant's functioning. Online awareness was operationalized by change in self-assessment of performance after engaging in a functional task. RESULTS: PwMS had significantly worse intellectual awareness than HCs regarding money management (confidence interval [CI] 0.44 to 1.99), task performance (CI -0.01 to 2.5), social interaction (CI 0.29 to 2.45), and problem solving (CI 0.87 to 2.8) abilities, but not sensory symptoms. Executive functioning was positively associated with intellectual awareness in HCs, while depressive and anxiety symptoms were negatively related to intellectual awareness in pwMS. In contrast, online awareness was not significantly different between groups; both groups were able accurately to assess their performance after engaging in a functional task. CONCLUSIONS: Intellectual awareness, but not online awareness, is impaired in pwMS. Among pwMS, affective symptomatology may distort their perception of functional status. Persons with MS may benefit from actually performing a functional task during the assessment and treatment process, which may lead to a more accurate estimate of their own abilities.


Assuntos
Função Executiva , Esclerose Múltipla , Ansiedade , Conscientização , Humanos , Percepção
19.
Neuropsychology ; 35(1): 69-77, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-33393801

RESUMO

OBJECTIVE: The use of Internet-based technology (IBT) is an important component of everyday living. However, persons with multiple sclerosis (MS) may face barriers to use. This study aimed to compare IBT perceived use and skills and actual performance in persons with MS and healthy controls (HCs). In addition, it aimed to examine IBT perceptions as a unique predictor of IBT performance beyond demographic, cognitive, motor, and affective factors in persons with MS. METHOD: Ninety-six persons with MS and 65 HCs aged 18 to 65 completed self-report and performance-based IBT measures along with assessments of cognition, motor function, and affect at a single time point. RESULTS: The MS group reported perceptions of less IBT use and poorer skills than HCs and demonstrated worse IBT performance as per accuracy and speed on the Actual Reality. In persons with MS, IBT perceptions and performance were significantly associated. Cognition and dexterity were significantly associated with IBT performance, and anxiety was associated with IBT perceptions. Disease duration, processing speed, and IBT perceptions were unique predictors of IBT performance in the MS group within a multivariate model. CONCLUSION: Persons with MS present with poorer IBT performance compared with HCs, which can limit participation. Processing speed and patient perceptions of IBT use and skills should be considered in technology design and training to improve the capabilities of persons with MS to use IBT for everyday living. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Assuntos
Atividades Cotidianas/psicologia , Internet , Esclerose Múltipla/psicologia , Desempenho Psicomotor , Adulto , Afeto , Ansiedade/psicologia , Cognição , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Destreza Motora , Valor Preditivo dos Testes , Tempo de Reação , Adulto Jovem
20.
Disabil Rehabil ; 43(8): 1129-1136, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-31453721

RESUMO

PURPOSE: To compare sensory processing and functional behavior abilities between participants with multiple sclerosis (MS), with and without cognitive impairments, and healthy controls, and to examine the role disease severity, cognitive impairment, and sensory processing have in predicting the functional behavior of persons with MS. METHODS: Sixty-one participants with MS were enrolled in this study, 43 with cognitive impairments and 18 without (based on the Brief International Cognitive Assessment for MS composite z-score), and 36 healthy controls. Participants were between the ages 23 and 63 and asked to complete the Adolescent/Adult Sensory Profile, Functional Behavior Profile, and MS Functional Composite. RESULTS: Both MS groups showed sensory processing difficulties with lower ability to register sensory input and greater sensory sensitivity and avoidance versus healthy controls. Among both MS groups, sensory processing difficulties correlated with greater disease severity and poor functional behavior in daily life. The significant predictors of functional behavior in daily life were a lower ability to register sensory input and greater sensory avoidance. CONCLUSIONS: Persons with MS have sensory processing difficulties regardless of their cognitive abilities, which negatively affect their functional behavior. Research and practice should further explore the role of sensory processing as expressed in daily scenarios for persons with MS and consider the functional impacts of this study in order to optimize daily life experiences for patients.Implications for rehabilitationSensory processing difficulties in multiple sclerosis (MS) are mainly expressed in poor ability to register and modulate sensory input from daily environment, regardless of patients' cognitive status.Sensory processing difficulties in MS may affect patients' ability to perform activities of daily living.Sensory processing difficulties in MS should be evaluated using objective measures (electrophysiology tools) as well as self-reports that reflect patients' difficulties in real life context.Intervention programs in MS should refer to sensory processing difficulties, to their correlation with disease severity, cognitive status and to their impacts on people's daily function.


Assuntos
Disfunção Cognitiva , Esclerose Múltipla , Atividades Cotidianas , Adolescente , Adulto , Cognição , Disfunção Cognitiva/etiologia , Humanos , Pessoa de Meia-Idade , Esclerose Múltipla/complicações , Percepção , Índice de Gravidade de Doença , Adulto Jovem
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