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1.
RMD Open ; 10(2)2024 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-38580348

RESUMO

OBJECTIVE: This international task force aimed to provide healthcare professionals and persons living with systemic lupus erythematosus (SLE) with consensus-based recommendations for physical activity and exercise in SLE. METHODS: Based on evidence from a systematic literature review and expert opinion, 3 overarching principles and 15 recommendations were agreed on by Delphi consensus. RESULTS: The overarching principles highlight the importance of shared decision-making and the need to explain the benefits of physical activity to persons living with SLE and other healthcare providers. The 15 specific recommendations state that physical activity is generally recommended for all people with SLE, but in some instances, a medical evaluation may be needed to rule out contraindications. Pertaining to outdoor activity, photoprotection is necessary. Both aerobic and resistance training programmes are recommended, with a gradual increase in frequency and intensity, which should be adapted for each individual, and ideally supervised by qualified professionals. CONCLUSION: In summary, the consensus reached by the international task force provides a valuable framework for the integration of physical activity and exercise into the management of SLE, offering a tailored evidence-based and eminence-based approach to enhance the well-being of individuals living with this challenging autoimmune condition.


Assuntos
Lúpus Eritematoso Sistêmico , Humanos , Consenso , Lúpus Eritematoso Sistêmico/terapia , Exercício Físico , Comitês Consultivos
2.
Artigo em Inglês | MEDLINE | ID: mdl-38642467

RESUMO

BACKGROUND: The development of disability related to activities of daily living (ADL) is of great concern in the aging population, particularly for Hispanic and Non-Hispanic (NH) Black older adults, where disability prevalence is greater compared to NH Whites. ADL-disability is typically measured across many functional tasks without differentiating upper- versus lower-limb limitations, hindering our understanding of disability burden. Despite the importance of the upper limbs for completing ADL and known age-related declines in function, racial/ethnic differences in upper limb function remain largely unknown. METHODS: We identified 4,292 NH White, NH Black, and Mexican American older adults (≥65) from the 2011-2018 waves of the National Health and Nutrition Examination Survey (NHANES). We classified participants as having a limitation based on their ability to complete five upper limb tasks (preparing meals, eating, dressing, reaching overhead, grasping small objects) and compared limitation rates across racial/ethnic groups. RESULTS: Compared to NH Whites, NH Black older adults had significantly greater odds of reporting difficulties preparing meals (OR: 1.36, 95% CI: 1.01, 1.86) and dressing (OR: 1.55, 95% CI: 1.19, 2.02), while Mexican Americans had greater difficulty preparing meals (OR: 1.70, 95% CI: 1.12, 2.58), dressing (OR: 1.63, 95% CI: 1.12, 2.36), and grasping small objects (OR: 1.48, 95% CI: 1.06, 2.07). CONCLUSIONS: Our results demonstrate differences in self-reported upper limb ADL-disability across racial/ethnic groups, particularly for Mexican American older adults. Such findings underscore the need for routine monitoring of upper limb function throughout adulthood to identify limitations and target therapeutic interventions before independence is compromised.

3.
Mult Scler ; 29(13): 1595-1603, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37880951

RESUMO

We know very little about exercise adherence, compliance and sustainability in multiple sclerosis (MS), yet adherence is seemingly important for yielding immediate and sustained health benefits. This paper is focused on exercise adherence, compliance and sustainability in the context of informing research and practice involving MS. This focus is critical for clarifying terminology for future research and providing a roadmap guiding clinical research and practice. Our objective was accomplished through a narrative summary of the literature by a panel of experts on exercise adherence from the Moving Exercise Research in Multiple Sclerosis Forward (MoXFo) initiative and a concluding summary of the state of the literature and future research directions. The panel of experts identified three overall themes (Background and Importance; Understanding and Promoting Exercise Adherence, Compliance and Sustainability and Challenges to Exercise Adherence, Compliance and Sustainability) that represented a categorization of nine subthemes. These overall themes and subthemes formed the basis of our recommendations regarding future research broadly involving exercise adherence in MS. Overall, there is limited evidence on rates and determinants of exercise adherence and compliance in MS, and little is known about techniques and interventions for immediate and long-term exercise behaviour change.


Assuntos
Esclerose Múltipla , Humanos , Esclerose Múltipla/terapia , Exercício Físico , Terapia por Exercício/métodos
4.
J Head Trauma Rehabil ; 38(4): 336-347, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36854099

RESUMO

OBJECTIVE: Although concussions affect millions of young adults annually, researchers have yet to assess factors that may affect future implementation of post-concussion academic supports within higher education. Therefore, we sought to evaluate preimplementation outcomes of the acceptability, feasibility, appropriateness, and readiness for change of the Post-Concussion Collegiate Return-to-Learn (RTL) Protocol among university stakeholders. SETTING: An online survey. PARTICIPANTS: A convenience sample ( N = 49; 63.3% female) of athletic trainers (ATs; n = 25, age = 30.1 ± 7.6 years) and university faculty/staff ( n = 24, age = 38.3 ± 9.9 years) across the National Collegiate Athletic Association (NCAA) Power 5 Conferences from January to February 2022. DESIGN: A cross-sectional study. MAIN MEASURES: To compare preimplementation outcome measures using the Acceptability of Intervention Measure (AIM), Feasibility of Intervention Measure (FIM), Intervention Appropriateness Measure (IAM), and Organizational Readiness for Implementing Change (ORIC) regarding the RTL protocol between ATs and university faculty/staff. Additional outcomes included internal and external barriers to implementing at their respective institutions. Statistical analyses were conducted using Mann-Whitney U tests, with effect sizes estimated using eta-squared coefficient (η 2 ). RESULTS: Quantitative analyses yielded no statistically significant group differences ( P s > .05) across the AIM, FIM, and IAM outcomes, indicating both groups perceived the protocol to be acceptable, feasible, and appropriate. Moreover, ATs reported higher agreement regarding motivation, desire, willingness to do "whatever it takes," commitment, and determination to implement the novel protocol than faculty/staff. Further, ATs reported higher agreement regarding their institution's confidence to keep track of its progress, support adjustment, maintain momentum, manage institutional politics, coordinate tasks, encourage investment, and handle the challenges of future implementation of the RTL protocol. CONCLUSIONS: Preliminary findings suggest ATs and university faculty/staff across the NCAA Power 5 Conferences may perceive the RTL protocol to be acceptable, feasible, and appropriate for future use; however, noteworthy internal and external barriers may influence its uptake. Future research should utilize implementation frameworks to support the protocol's adoption and reach.


Assuntos
Traumatismos em Atletas , Concussão Encefálica , Medicina Esportiva , Esportes , Adulto Jovem , Humanos , Feminino , Adulto , Pessoa de Meia-Idade , Masculino , Universidades , Estudos Transversais , Concussão Encefálica/diagnóstico , Atletas , Inquéritos e Questionários
5.
Contemp Clin Trials ; 126: 107088, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36669728

RESUMO

BACKGROUND: We propose a randomized controlled trial (RCT) that examines the effects of a remotely-delivered, cultrally-tailored exercise training program for immediate and sustained improvements in patient-reported outcomes (PROs) of walking dysfunction, symptoms, and health-related quality of life (HRQOL) among African-Americans with multiple sclerosis (MS). METHODS/DESIGN: The study will be conducted using a parallel group RCT design. The RCT examines the effects of a remotely-delivered, culturally-tailored exercise training program compared with an active control condition among 100 African-Americans with MS. The primary PROs focus on walking dysfunction. The secondary PROs include symptoms of fatigue, depression, anxiety, and HRQOL. The tertiary PROs include exercise behavior and mediator variables based on social cognitive theory. Participants will be randomly assigned into one of two conditions, intervention (Aerobic and Resistance Exercise Training) or active control (Stretching and Flexibility), using a random numbers sequence with concealed allocation. The conditions will be administered over four months by a trained behavioral coach who will be uninvolved in recruitment, screening, random assignment, and outcome assessment. We will monitor the outcomes of interest before and after the 4-month intervention period, and then again 4 months after intervention cessation for capturing stability of intervention effects. The data analysis will follow intent-to-treat principles with a linear mixed model. DISCUSSION: If successful, this RCT will provide initial evidence for the uptake and implementation of the program in clinics/environments providing healthcare for African-Americans with MS.


Assuntos
Terapia por Exercício , Esclerose Múltipla , Treinamento de Força , Humanos , Negro ou Afro-Americano , Terapia por Exercício/psicologia , Esclerose Múltipla/terapia , Esclerose Múltipla/psicologia , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Caminhada
6.
Aging Clin Exp Res ; 34(10): 2505-2514, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-35871136

RESUMO

BACKGROUND: Grip strength is commonly used to assess hand function among older adults. While shown to be associated with disability, the degree to which grip strength specifically predicts hand limitations is unknown. AIMS: The primary aim of this study was to evaluate grip strength as a predictor of hand limitations. METHODS: Using the 2011-14 National Health and Nutrition Examination Survey (NHANES), we classified older adults reporting one or more hand limitations versus those with no limitations. Odds ratios were used to assess the association between grip strength (separated into quartiles) and the likelihood of a hand limitation while controlling for sex, race/ethnicity, education level, income, and pain. Receiver operator characteristic (ROC) curves were used to evaluate the degree to which grip strength discriminates between older adults with and without a hand limitation. RESULTS: We identified 2064 older adults (age ≥ 65), 31% of whom reported a hand-related limitation. Older adults with very low grip strength (weakest quartile) were more likely to report at least one limitation (OR: 6.1, 95% CI: 3.2, 11.8) than those with high grip strength (strongest quartile). However, grip strength had poor to moderate discrimination of hand limitations (ROC area under curves: 0.65-0.81). DISCUSSION: While self-reported hand limitations were associated with lower grip strength; overall, it is a relatively poor predictor of hand impairments among older adults. CONCLUSION: Better assessments are needed to adequately evaluate upper extremity impairments to help older adults maintain functional independence.


Assuntos
Pessoas com Deficiência , Força da Mão , Humanos , Idoso , Inquéritos Nutricionais , Extremidade Superior , Autorrelato
7.
Disabil Health J ; 15(4): 101344, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-35725690

RESUMO

BACKGROUND: There is increasing research interest regarding physical activity behavior among persons with multiple sclerosis (MS), yet there is little known about physical activity and its correlates in Black persons with MS. OBJECTIVE: This cross-sectional study assessed associations among social cognitive theory (SCT) variables and device-measured and self-reported physical activity in samples of Black and White persons with MS. METHODS: Participants included 67 Black and 141 White persons with MS who wore an ActiGraph accelerometer on a belt around the waist measuring moderate-to-vigorous physical activity (MVPA) for seven days and completed a battery of questionnaires. Questionnaires included demographic and clinical characteristics, leisure-time exercise, exercise self-efficacy, overcoming barriers self-efficacy, function, social support, exercise outcome expectations, and goal setting and planning. RESULTS: Black participants with MS engaged in significantly less MVPA, but not sedentary behavior or light physical activity, than the White participants with MS. Black participants further had significantly lower levels of exercise self-efficacy and outcome expectations than the White sample. All SCT correlates were significantly correlated with self-reported physical activity, but only exercise and barriers self-efficacy, perceived function, and exercise goal setting were associated with device-measured MVPA. The difference in physical activity between Black and White participants with MS was accounted for by differences in exercise self-efficacy and outcome expectations. CONCLUSIONS: Researchers should consider developing behavioral interventions that target exercise self-efficacy and outcome expectations as SCT variables for increasing physical activity in Black persons with MS.

8.
Adapt Phys Activ Q ; 39(4): 399-423, 2022 Oct 01.
Artigo em Inglês | MEDLINE | ID: mdl-35472758

RESUMO

Exercise is becoming more integrated into the management of multiple sclerosis (MS) and is promoted to manage impairments and symptoms. Whereas extensive research outlines factors impacting participation, less is known regarding how medicalized exercise promotion might impact views of exercise and self. We conducted a secondary data analysis to understand how medicalized exercise-promotion paradigms impact the meaning and roles of exercise among those with MS. Twenty-two interviews were selected for reanalysis with an interpretative phenomenological analysis methodology and a critical disability studies lens. Three themes were identified: Constant Vigilance (worry about exercise), Productivity and Social Engagement (exercise to feel productive, engage socially, and enhance self-worth), and Exercise as Medicine/Self-Care (exercise to manage MS, relax, improve mental well-being, prevent/reverse disability, and stay healthy). This research underscores that exercise occupies many contradictory roles reflecting a medicalized exercise-promotion paradigm for those with MS, and this should inform exercise promotion practices.


Assuntos
Esclerose Múltipla , Análise de Dados , Exercício Físico , Humanos , Medicalização , Pesquisa Qualitativa , Autocuidado
9.
Contemp Clin Trials ; 114: 106690, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-35091136

RESUMO

The Lupus Intervention Fatigue Trial (LIFT) is a prospective, randomized controlled trial to assess the effectiveness of a six-month motivational interviewing intervention program versus an educational control to reduce fatigue in persons with systematic lupus erythematosus (SLE). Participants are randomized using a stratified, 1:1 allocation design to the LIFT intervention or control arm. We plan to enroll 236 participants to achieve the target of 200 persons with six-month follow-up for the primary endpoint. Specific aims of this study are to evaluate the impact of the LIFT intervention on 1) self-reported measures of fatigue and 2) impact on accelerometer-measured physical activity. The primary study outcome is six-month change in fatigue from baseline, assessed by the Fatigue Severity Score (FSS). Additional outcomes include objective measures of physical activity, including non-sedentary behavior and moderate-to-vigorous activity (secondary outcome), and adherence to the LIFT dietary intervention, as assessed by nutrient density (diet quality) and recommended food groups/eating patterns (exploratory outcome) in persons with SLE. Intervention effectiveness will be assessed using an intention-to-treat two-arm comparison of six-month change in FSS, with one interim monitoring analysis. A two-sample independent group t-test will compare the six-month changes in FSS between the study arms. Intervention effect durability will be assessed 12-months after baseline (6 months after completion of the intervention). Enrollment began in June 2019 and is expected to end in June 2023. This study will inform future intervention strategies that promote physical activity and improved diet quality to reduce fatigue in persons with SLE.


Assuntos
Lúpus Eritematoso Sistêmico , Entrevista Motivacional , Dieta , Exercício Físico , Fadiga/terapia , Humanos , Lúpus Eritematoso Sistêmico/terapia , Estudos Prospectivos , Ensaios Clínicos Controlados Aleatórios como Assunto
10.
Disabil Rehabil ; 44(12): 2648-2659, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-33174442

RESUMO

PURPOSE: Strong evidence supports the benefits of physical activity (PA) and exercise for adults with multiple sclerosis (MS) and multidisciplinary PA guidelines exist. Previous research indicates that healthcare professionals may not yet widely promote exercise to their patients with MS. Before active promotion of PA/exercise becomes widespread practice for healthcare professionals, it is essential to understand the disability and inaccessibility-related barriers to exercise for this population. We sought to understand the barriers to PA/exercise among individuals with MS across a spectrum of MS impairment. METHODS: Participants were instructed to take pictures of people, places and things that make PA/exercise easier or more difficult in preparation for a semi-structured interview. This photo elicitation approach allowed individuals to explain the barriers they faced even if they would not attribute those barriers to ableism or inaccessibility themselves. Interviews were analyzed using Interpretative Phenomenological Analysis. RESULTS: Twenty-three persons with MS participated. Three main themes were: inaccessibility limits PA/exercise participation, ableism happens in the PA space, and assistive devices both provide access to PA and are associated with disability stigma. CONCLUSION: This study adds nuance to current understandings of the barriers and facilitators of PA in this population by illustrating the disability-specific barriers and experiences with inaccessibility. With increasing efforts to promote PA, there must be an increased awareness of the structural inequalities and barriers that physically and psychologically affect decision-making around PA.IMPLICATIONS FOR REHABILITATIONThere are many barriers to exercise for individuals with multiple sclerosis which prevent this population from experiencing the benefits of exercise.Rehabilitation professionals may play a role in drawing attention to accessible resources when providing recommendations or discussing barriers with their patients/clients.Rehabilitation professionals should consider that people with MS make decisions about assistive technology based on their needs, the meanings they attribute to it, expectations and attitudes of people around them.People with MS experience disability stigma as they participate in exercise and physical activity and this may extend into the rehabilitation space in the form of perceived compulsory ablebodiedness.


Assuntos
Pessoas com Deficiência , Esclerose Múltipla , Adulto , Pessoas com Deficiência/reabilitação , Exercício Físico , Terapia por Exercício , Humanos , Esclerose Múltipla/reabilitação , Pesquisa Qualitativa , Discriminação Social
11.
Arch Phys Med Rehabil ; 102(2): 203-215, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33171130

RESUMO

OBJECTIVE: To describe the experiences of clinicians who have used robotic exoskeletons in their practice and acquire information that can guide clinical decisions and training strategies related to robotic exoskeletons. DESIGN: Qualitative, online survey study, and 4 single-session focus groups followed by thematic analysis to define themes. SETTING: Focus groups were conducted at 3 regional rehabilitation hospitals and 1 Veteran's Administration (VA) Medical Center. PARTICIPANTS: Clinicians (N=40) reported their demographic characteristics and clinical experience using robotic exoskeletons. Twenty-nine clinicians participated in focus groups at regional hospitals that use robotic exoskeletons, as well as 1 VA Medical Center. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Clinicians' preferences, experiences, training strategies, and clinical decisions on how robotic exoskeleton devices are used with Veterans and civilians with spinal cord injury. RESULTS: Clinicians had an average of 3 years of experience using exoskeletons in clinical and research settings. Major themes emerging from focus group discussions included appropriateness of patient goals, patient selection criteria, realistic patient expectations, patient and caregiver training for use of exoskeletons, perceived benefits, preferences regarding specific exoskeletons, and device limitations and therapy recommendations. CONCLUSIONS: Clinicians identified benefits of exoskeleton use including decreased physical burden and fatigue while maximizing patient mobility, increased safety of clinicians and patients, and expanded device awareness and preferences. Suitability of exoskeletons for patients with various characteristics and managing expectations were concerns. Clinicians identified research opportunities as technology continues to advance toward safer, lighter, and hands-free devices.


Assuntos
Exoesqueleto Energizado , Padrões de Prática Médica/estatística & dados numéricos , Robótica/instrumentação , Traumatismos da Medula Espinal/fisiopatologia , Traumatismos da Medula Espinal/reabilitação , Adulto , Feminino , Grupos Focais , Hospitais de Veteranos , Humanos , Masculino , Pesquisa Qualitativa , Inquéritos e Questionários , Estados Unidos
12.
J Neuroeng Rehabil ; 17(1): 124, 2020 09 11.
Artigo em Inglês | MEDLINE | ID: mdl-32917287

RESUMO

BACKGROUND: Persons with spinal cord injury (SCI) may experience both psychological and physiological benefits from robotic locomotor exoskeleton use, and knowledgeable users may have valuable perspectives to inform future development. The objective of this study is to gain insight into the experiences, perspectives, concerns, and suggestions on the use of robotic locomotor exoskeletons by civilians and veterans living with SCI. METHODS: Participants reported their demographic characteristics and the extent of robotic exoskeleton use in an online survey. Then, 28 experienced robotic locomotor exoskeleton users participated in focus groups held at three regional hospitals that specialize in rehabilitation for persons with SCI. We used a qualitative description approach analysis to analyze the data, and included thematic analysis. RESULTS: Participants expressed that robotic exoskeletons were useful in therapy settings but, in their current form, were not practical for activities of daily living due to device limitations. Participants detailed the psychological benefits of being eye-level with their non-disabled peers and family members, and some reported physiologic improvements in areas such as bowel and bladder function. Participants detailed barriers of increased fatigue, spasticity, and spasms and expressed dissatisfaction with the devices due to an inability to use them independently and safely. Participants provided suggestions to manufacturers for technology improvements. CONCLUSIONS: The varied opinions and insights of robotic locomotor exoskeletons users with SCI add to our knowledge of device benefits and limitations.


Assuntos
Exoesqueleto Energizado , Robótica/instrumentação , Traumatismos da Medula Espinal/reabilitação , Atividades Cotidianas , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Pesquisa Qualitativa , Inquéritos e Questionários , Adulto Jovem
13.
Disabil Rehabil Assist Technol ; 15(7): 762-772, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32255369

RESUMO

Purpose: To describe appraisals of robotic exoskeletons for locomotion by potential users with spinal cord injuries, their perceptions of device benefits and limitations, and recommendations for manufacturers and therapists regarding device use.Materials and methods: We conducted focus groups at three regional rehabilitation hospitals and used thematic analysis to define themes.Results: Across four focus groups, 35 adults participated; they were predominantly middle-aged, male, and diverse in terms of race and ethnicity, well educated, and not working. Participants had been living with SCI an average of two decades. Most participants were aware of exoskeletons. Some were enthusiastic about the usability of the devices while others were more circumspect. They had many questions about device affordability and usability, and were discerning in their appraisal of benefits and suitability to their particular circumstances. They reflected on device cost, the need for caregiver assistance, use of hands, and environmental considerations. They weighed the functional benefits relative to the cost of preferred activities. Their recommendations focused on cost, battery life, and independent use.Conclusions: Potential users' appraisals of mobility technology reflect a nuanced appreciation of device costs; functional, social, and psychological benefits; and limitations. Results provide guidance to therapists and manufacturers regarding device use.Implications for RehabilitationPotential users of robotic locomotor exoskeletons with spinal cord injuries appreciate the functional, social, and psychological benefits that these devices may offer.Their appraisals reflect nuanced consideration of device cost and features, and the suitability of the assistive technology to their circumstances.They recommend that manufacturers focus on reducing cost, extending battery life, and features that allow independent use.


Assuntos
Exoesqueleto Energizado , Transtornos Neurológicos da Marcha/reabilitação , Conhecimentos, Atitudes e Prática em Saúde , Locomoção , Traumatismos da Medula Espinal/reabilitação , Adulto , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Veteranos
14.
Mult Scler J Exp Transl Clin ; 5(1): 2055217319834715, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30858982

RESUMO

BACKGROUND: The promotion of exercise among black individuals with multiple sclerosis (MS) is important for managing the functional and symptomatic manifestations of MS. OBJECTIVE: The objective of this study was to elicit exercise program preferences among black individuals with MS. METHODS: Participants completed a survey delivered through Qualtrics. The survey measured exercise program component preferences, the importance of racial considerations, and barriers and facilitators to exercise participation. RESULTS: Forty black individuals with MS completed the survey and reported a preference for five days per week (range 0-7) of exercise at a moderate intensity (50% of the sample). Over 60% of participants desired an exercise program that was longer than six months, and over half wanted the aid of a behavioral coach. Participants preferred weight/resistance training exercises (52.5%) and easy walking (35%) modalities. The outcomes expected from exercise were increased muscle strength (65%) and improved overall body functioning (60%). The anticipated barriers for exercise were largely fatigue (40%) and time management (32.5%). The desired facilitators were a personal trainer (57.5%) and more exercise information (32.5%). Cultural and racial tailoring was very important or held some importance on the components of the program. CONCLUSION: The findings of this study should be considered when developing exercise interventions for black individuals with MS.

15.
Disabil Rehabil ; 41(25): 3071-3078, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-30039984

RESUMO

Background: Patient and public involvement and engagement and consumer feedback are encouraged by community leaders, policymakers, and funders to address health problems. Patient and consumer feedback is a critical step in scaling research applications among persons with multiple sclerosis (MS). This is important as there are physical activity guidelines for exercise in MS that have important translational utility for research, yet participation in exercise research is low among persons with MS. This may be explained by minimal engagement of persons with MS in research design. It is important to understand experiences in exercise research participation, as this will improve the translation of preliminary research into a larger phase II efficacy study.Objectives: We aimed to understand experiences of persons with MS who participated in a feasibility research study of a home-based exercise intervention grounded in current physical activity guidelines and supplemented with behavioural change modules.Methods: This study was a qualitative extension of our main feasibility study and included a basic qualitative research design based on feedback questionnaires and semi-structured interviews. Participants were recruited from those who completed our feasibility study of a 4-month home-based, exercise-training programme supplemented by behavioural strategies for promoting compliance among persons living with MS. Eighteen participants with mild to moderate disability provided study feedback. Coding and thematic analyses were performed, and questionnaire feedback and interview data were triangulated to provide meaningful data from participants.Results: Our analysis identified two main themes for improving a future phase II efficacy study. The themes were 1. Enrolment and assessments and 2. Improvements in the design and delivery of the exercise programme components.Conclusions: Exercise participation is important to improve and manage the symptoms and general health of persons with MS. Including persons with MS in the development and assessment of research will provide vital information to improve the design of future exercise studies. Capitalising on feedback from research participants and opinions from consumers of research will help researchers and clinicians deliver meaningful exercise interventions that are directly relevant to persons with MS.Implications for RehabilitationThe current physical activity guidelines for persons with MS are acceptable to persons with MS and rehabilitation professionals should prescribe these guidelines as appropriate.Consideration should be made to the use of individualised recruitment methods to optimise participation of persons with MS in exercise interventions.Rehabilitation professionals should combine behaviour change approaches with exercise interventions to optimise exercise participation in persons with MS.


Assuntos
Terapia por Exercício , Retroalimentação , Esclerose Múltipla/reabilitação , Projetos de Pesquisa , Sujeitos da Pesquisa , Adulto , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Participação do Paciente , Ensaios Clínicos Controlados Aleatórios como Assunto , Inquéritos e Questionários
16.
Disabil Rehabil ; 41(2): 166-171, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-29111839

RESUMO

OBJECTIVES: This study adopted a qualitative research design with directed content analysis and examined the interpretations of physical activity, exercise, and sedentary behaviour by persons with multiple sclerosis. METHODS: Fifty three persons with multiple sclerosis who were enrolled in an exercise trial took part in semi-structured interviews regarding personal interpretations of physical activity, exercise, and sedentary behaviours. RESULTS: Forty three percent of participants indicated a consistent understanding of physical activity, 42% of participants indicated a consistent understanding of exercise, and 83% of participants indicated a consistent understanding of sedentary behaviour with the standard definitions. There was evidence of definitional ambiguity (i.e., 57, 58, and 11% of the sample for physical activity, exercise, and sedentary behaviour, respectively); 6% of the sample inconsistently defined sedentary behaviour with standard definitions. Some participants described physical activity in a manner that more closely aligned with exercise and confused sedentary behaviour with exercise or sleeping/napping. CONCLUSIONS: Results highlight the need to provide and utilise consistent definitions for accurate understanding, proper evaluation and communication of physical activity, exercise, and sedentary behaviours among persons with multiple sclerosis. PRACTICE IMPLICATIONS: The application of consistent definitions may minimise ambiguity, alleviate the equivocality of findings in the literature, and translate into improved communication about these behaviours in multiple sclerosis. Implications for Rehabilitation The symptoms of multiple sclerosis can be managed through participation in physical activity and exercise. Persons with multiple sclerosis are not engaging in sufficient levels of physical activity and exercise for health benefits. Rehabilitation professionals should use established definitions of physical activity, exercise, and sedentary behaviours when communicating about these behaviours among persons with multiple sclerosis.


Assuntos
Exercício Físico , Esclerose Múltipla , Comportamento Sedentário , Adulto , Atitude Frente a Saúde , Exercício Físico/fisiologia , Exercício Físico/psicologia , Terapia por Exercício/métodos , Terapia por Exercício/psicologia , Feminino , Humanos , Masculino , Esclerose Múltipla/fisiopatologia , Esclerose Múltipla/psicologia , Pesquisa Qualitativa
17.
Contemp Clin Trials ; 75: 1-8, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-30342254

RESUMO

BACKGROUND: Exercise training is a promising approach for managing multiple sclerosis (MS), but existing research has not focused on black individuals with MS. This is important as black individuals with MS may experience a more aggressive disease course, increased comorbidities, and have a poorer prognosis with disease modifying therapies. MATERIALS AND METHODS: Thirty-two black adults with mild-to-moderate MS related disability participated in a patient-informed, three-month, home-based, racially tailored, exercise program. The exercise program, Project GEMS, was modified for black persons with MS through patient feedback. The feasibility of the modified exercise program was measured through the four domains of process (e.g., recruitment and retention), resources (e.g., communication and monetary costs), management (e.g., of data management and safety reporting), and scientific outcomes (e.g., safety, burden, adherence, experience, and treatment effect). RESULTS: This exercise program was feasible, safe, and well received based on data analysis and formative evaluation. Twenty-four participants completed post-assessment (75%; two dropped out, six did not return follow-up assessments). The exercise program cost a total of $3726.57 (personnel costs = $2128.74 USD, $20.87 USD per/h; exercise program costs = $1597.83 USD, mean cost per person = $46.93). Participants were adherent with 70% of the 48 exercise sessions via self-reported exercise logs. There was a significant and large increase (t = -5.1, p < .001, d = -1.0) in exercise behavior as measured by the Godin Leisure-Time Exercise Questionnaire. CONCLUSION: The results support the feasibility, acceptability, safety, and efficacy of this intervention for increasing exercise behavior among black adults with mild-to-moderate MS.


Assuntos
Negro ou Afro-Americano , Terapia por Exercício/métodos , Esclerose Múltipla/reabilitação , Cooperação do Paciente , Adulto , Custos e Análise de Custo , Terapia por Exercício/economia , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde , Seleção de Pacientes , Treinamento de Força/economia , Treinamento de Força/métodos , Autocuidado , Resultado do Tratamento
18.
PLoS One ; 13(10): e0205382, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30335774

RESUMO

BACKGROUND: Multiple sclerosis (MS) is a disease of the central nervous system that causes ataxia and deficits in balance. Exercise-based therapies have been identified as integral to the recovery of motor function in MS, but few studies have investigated non-traditional movement interventions. We examined a targeted ballet program (TBP) designed to mitigate ataxia and improve balance in females with mild-to-moderate relapsing-remitting MS. METHODS AND FINDINGS: Twelve females with mild-to-moderate disability due to MS were assessed for study eligibility for the study. Ten participants met the inclusion criteria. Two were lost to unrelated health complications. Eight participants completed the TBP. The TBP met twice a week for 60 minutes for 16 weeks. Assessments included (a) the International Cooperative Ataxia Rating Scale (ICARS), (b) the Mini-Balance Evaluations Systems Test (Mini-BESTest), (c) smoothness of movement during a five-meter walk, and (d) balance in a step to stand task before and after the TBP. There were no TBP-related adverse events. Single-tailed paired samples t-tests and Wilcoxon tests were conducted. Improvements were observed in ICARS (p = 7.11E-05), Mini-BESTest (p = 0.001), smoothness of movement in the left (p = 0.027) and right (p = 0.028) sides of the body, and balance in a step-to-stand task in the back (p = 0.025) direction. Results yielded 42% and 58% improvements in the mean Mini-BESTest and ICARS scores, respectively. CONCLUSIONS: This study adds to current research by providing support for a TBP intervention targeting ataxia and balance in MS. The TBP was well tolerated, improved balance, and mitigated ataxia. Clinical improvements were larger than those of previous studies on physical rehabilitation in MS with similar outcome measures. TRIAL REGISTRATION: ISRCTN ISRCTN67916624.


Assuntos
Ataxia/patologia , Dança , Esclerose Múltipla/terapia , Equilíbrio Postural/fisiologia , Adulto , Idoso , Terapia por Exercício , Feminino , Marcha/fisiologia , Humanos , Pessoa de Meia-Idade , Esclerose Múltipla/patologia , Índice de Gravidade de Doença
19.
Mult Scler J Exp Transl Clin ; 3(4): 2055217317734886, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-29051831

RESUMO

BACKGROUND: Internet-delivered, behavioral interventions represent a cost-effective, broadly disseminable approach for teaching persons with multiple sclerosis (MS) the theory-based skills, techniques, and strategies for changing physical activity. OBJECTIVES: This pilot, randomized controlled trial examined the efficacy of a newly developed Internet website based on e-learning approaches that delivered a theory-based behavior intervention for increasing physical activity and improving symptoms, walking impairment, and neurological disability. METHODS: Participants with MS (N = 47) were randomly assigned into behavioral intervention (n = 23) or waitlist control (n = 24) conditions delivered over a six-month period. Outcomes were administered before and after the six-month period using blinded assessors, and data were analyzed using analysis of covariance in SPSS. RESULTS: There was a significant, positive intervention effect on self-reported physical activity (P = 0.05, [Formula: see text] = 0.10), and non-significant improvement in objectively measured physical activity (P = 0.24, [Formula: see text] = 0.04). There were significant, positive effects of the intervention on overall (P = 0.018, [Formula: see text] = 0.13) and physical impact of fatigue (P = 0.003, [Formula: see text] = 0.20), self-reported walking impairment (P = 0.047, [Formula: see text] = 0.10), and disability status (P = 0.033, [Formula: see text] = 0.11). There were non-significant improvements in fatigue severity (P = 0.10, [Formula: see text] = 0.06), depression (P = 0.10, [Formula: see text] = 0.07) and anxiety (P = 0.06, [Formula: see text] = 0.09) symptoms, and self-reported disability (P = 0.10, [Formula: see text] = 0.07). CONCLUSIONS: We provide evidence for the efficacy of an Internet-based behavioral intervention with content delivered through interactive video courses grounded in e-learning principles for increasing physical activity and possibly improving secondary outcomes of fatigue, depression, anxiety, and walking impairment/disability in persons with MS.

20.
Disabil Health J ; 10(4): 580-586, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28363457

RESUMO

BACKGROUND: Physical inactivity and elevated depressive symptoms are both highly prevalent and correlated among persons with multiple sclerosis (MS). Variables from Social Cognitive Theory (SCT) might be differentially correlated with physical activity in persons with MS who have elevated depressive symptoms. PURPOSE: This study investigated the influence of elevated depressive symptoms on correlates of physical activity based on SCT in persons with MS. METHODS: Participants (mean age = 50.3 years, 87% female, 69% Caucasian) completed questionnaires on physical activity, depressive symptoms, self-efficacy, social support, outcome expectations, functional limitations, and goal setting. The questionnaires were delivered and returned through the U.S. Postal Service. The sample (N = 551) was divided into 2 subgroups (i.e., elevated vs non-elevated levels of depressive symptoms) for statistical analyses. Bivariate correlations and stepwise multiple regressions were conducted using SPSS. RESULTS: Self-efficacy (r = 0.16), functional limitations (r = 0.22) and goal-setting (r = 0.42) were significantly (p < 0.05) associated with physical activity among the elevated depressive sample. The regression analysis indicated that self-efficacy predicted physical activity in Step 1 (ß = 0.16, p < 0.05), but was no longer significant when goal-setting (ß = 0.06, p > 0.05) entered the model. All social cognitive variables were significantly associated with physical activity levels (r = 0.16-0.40, p < 0.001) among the non-elevated depressive sample. Self-efficacy predicted physical activity in Step 1 (ß = 0.24, p < 0.001), but it was no longer significant once goal-setting, functional limitations, and self-evaluative outcome expectations entered the model. CONCLUSION: Based on SCT, self-efficacy and goal-setting represent possible targets of behavior interventions for increasing physical activity among persons with MS who have elevated depressive symptoms. There is a larger set of targets among those with MS who do not have elevated symptoms.


Assuntos
Depressão/complicações , Pessoas com Deficiência , Exercício Físico , Objetivos , Intenção , Esclerose Múltipla/complicações , Autoeficácia , Atividades Cotidianas , Adulto , Cognição , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Apoio Social , Inquéritos e Questionários , Estados Unidos
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