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1.
Mult Scler ; 26(12): 1448-1458, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-31971074

RESUMEN

Helminthic worms are ancestral members of the intestinal ecosystem that have been largely eradicated from the general population in industrialized countries. Immunomodulatory mechanisms induced by some helminths mediate a "truce" between the mammalian host and the colonizing worm, thus allowing for long-term persistence in the absence of immune-mediated collateral tissue damage. This concept and the geographic discrepancy between global burdens of chronic inflammatory diseases and helminth infection have sparked interest in the potential of using helminthic worms as a therapeutic intervention to limit the progression of autoimmune diseases such as multiple sclerosis (MS). Here, we present and evaluate the evidence for this hypothesis in the pre-clinical animal model of MS, experimental autoimmune encephalitis, in helminth-infected MS patients and in clinical trials of administered helminth immunotherapy (HIT).


Asunto(s)
Helmintiasis , Helmintos , Esclerosis Múltiple , Animales , Ecosistema , Helmintiasis/terapia , Humanos , Inmunoterapia , Esclerosis Múltiple/terapia
2.
Clin Anat ; 29(5): 561-7, 2016 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-26480021

RESUMEN

Angelman's syndrome (AS) is a genetic neurodevelopment disorder. The cause is a known abnormality involving the maternal inherited ubiquitin-protein ligase (UBE3A) gene. Clinical characteristics universal to the disorder are well documented in the literature and include developmental delay, seizures, ataxia, altered tone, severely impaired speech and intellect, as well as an overall happy demeanor, frequent bouts of laughter, and hypermotoric behavior. Associated with this disorder are several musculoskeletal aberrations. To date, a review of case studies reporting on these musculoskeletal changes has not been carried out. Thus, the purpose of this paper was to provide an overview of the musculoskeletal changes present in individuals with AS. In our review of 21 case reports from 1965-2013, the most consistently reported anatomical changes were of the craniofacial region. These include microcephaly, brachycephaly, a palpable occipital groove, prognathism, and wide spaced teeth. Other musculoskeletal abnormalities less frequently reported in the literature include scoliosis, excessive lumbar lordosis, and pes planus. Given that the majority of the case reports reviewed was of young children, the possibility of underreporting musculoskeletal changes which may manifest in the later years of life may be present. Early diagnosis and interventions to minimize secondary complications are crucial to maintain quality of life. An overall multidisciplinary approach is emphasized to maximize developmental potential for these individuals. Future prospective studies that follow patients into adulthood are needed to better understand the prevalence and development of secondary musculoskeletal changes, which in turn can inform intervention techniques and preventative measures. Clin. Anat. 29:561-567, 2016. © 2015 Wiley Periodicals, Inc.


Asunto(s)
Síndrome de Angelman/patología , Cráneo/patología , Síndrome de Angelman/complicaciones , Síndrome de Angelman/diagnóstico , Síndrome de Angelman/epidemiología , Diagnóstico Diferencial , Manejo de la Enfermedad , Humanos , Anomalías Musculoesqueléticas/etiología , Prevalencia , Pronóstico
3.
Mult Scler Relat Disord ; 87: 105689, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38820698

RESUMEN

BACKGROUND: The growing importance of telehealth in multiple sclerosis (MS) necessitates an understanding of current practices and training needs of health professionals. We aimed to evaluate the knowledge, preparedness, and training preferences of Australian allied health professionals (AHPs) in telehealth exercise therapy and exercise behavioural change for MS patients to inform the development of educational training. METHODS: An online survey was completed by 58 Australian AHPs, including 34 physiotherapists, 14 exercise physiologists, and 10 occupational therapists, focusing on their current practices, preparedness, and training preferences in telehealth exercise and behavioural change for MS. The survey included multiple-choice, Likert scale, and free-text response questions. Data were analysed using binary and multinomial logistic regressions. RESULTS: Not all AHPs were aware of MS exercise guidelines (67% awareness), with exercise physiologists showing the highest familiarity. There was a significant understanding of the difference between physical activity and exercise, though definitions often lacked clarity. Most AHPs (91%) employed behavioural change strategies in their practice, especially goal-setting (95%), identifying facilitators (67%), and reinforcing progress (66%). While most (72%) felt prepared in promoting exercise to MS clients, there were differences in confidence levels concerning the prescription, modification, and teaching of telehealth exercise programs, with occupational therapists have significant less confidence in those domains compared to other AHPs. Most AHPs expressed interest in additional training, with a preference for online workshops focusing on exercise prescription for MS, behaviour change, and telehealth delivery methods. CONCLUSION: In our Australian AHP sample we identified that a quarter to a third of AHPs in MS care may not be confident or prepared to promote telehealth exercise and behavioural change to people with MS. Moreover, the findings highlight some disparity in knowledge and confidence levels amongst different AHPs concerning exercise therapy for MS, indicating the need for tailored multidisciplinary training programs. Such programs should address profession-specific educational gaps and training preferences, ensuring effective and safe telehealth exercise prescription in MS care.


Asunto(s)
Técnicos Medios en Salud , Terapia por Ejercicio , Conocimientos, Actitudes y Práctica en Salud , Esclerosis Múltiple , Telemedicina , Humanos , Esclerosis Múltiple/terapia , Esclerosis Múltiple/rehabilitación , Terapia por Ejercicio/métodos , Australia , Masculino , Femenino , Adulto , Persona de Mediana Edad , Actitud del Personal de Salud , Fisioterapeutas/educación
4.
Int J MS Care ; 26(1): 22-29, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38213676

RESUMEN

BACKGROUND: Sleep disturbances are common in individuals with multiple sclerosis. The objective of this systematic review was to determine effective behavioral interventions to improve their sleep. METHODS: Literature searches were performed in December 2021 in Ovid MEDLINE, Elsevier Embase, and Web of Science, along with hand searching for grey literature and cited references. Four reviewers independently reviewed titles and abstracts (2 reviewers for each article; n = 830) and the full-text articles (n = 81). Consensus for inclusion was achieved by a fifth reviewer. Thirty-seven articles were eligible for inclusion. Four reviewers extracted relevant data from each study (2 reviewers for each article) using a standard data extraction table. Consensus was achieved for completeness and accuracy of the data extraction table by a fifth reviewer. The same 4 reviewers conducted a quality appraisal of each article to assess the risk of bias and quality of the articles, and consensus was achieved by a fifth reviewer as needed. Descriptive data were used for types of interventions, sleep outcomes, results, and key components across interventions. RESULTS: Overall, the cognitive behavioral therapy for insomnia, cognitive behavioral therapy/psychotherapy, and education/self-management support interventions reported positive improvements in sleep outcomes. Quality appraisal scores ranged from low to high, indicating potential for bias. CONCLUSIONS: Variability in the intervention type, intervention dose, outcomes used, training/expertise of interventionist, specific sample, and study quality made it difficult to compare and synthesize results. Further research is necessary to demonstrate the efficacy of most of the interventions.

5.
Gait Posture ; 114: 21-27, 2024 Aug 28.
Artículo en Inglés | MEDLINE | ID: mdl-39213950

RESUMEN

BACKGROUND: Previous research has suggested that spatiotemporal step parameters differ between settings; however, it remains unclear how different settings influence walking balance control. RESEARCH QUESTION: How do settings and sex influence walking balance control during walking at different speeds for young adults? METHODS: Forty-two adults (21 male (23 ± 4 years), 21 female (24 ± 5 years)) completed overground walking trials in four settings: laboratory (10 m), hallway, indoor open, and outdoor pathway (all 20 m) at three self-selected speeds (slow, preferred, fast) following verbal instructions. Participants wore 17 inertial sensors (Xsens Awinda, Movella, Henderson, NV) to capture total body kinematics. The number of included strides was matched across all conditions, with six strides included in each condition for all participants. Medial-lateral and anterior-posterior total body angular momentum range over each stride was calculated (HML range and HAP range). Setting × speed × sex mixed factorial analysis of variance with repeated measures on setting and speed were used for statistical analysis (α =.05). RESULTS: Significant setting × speed interactions (p <.001) were present for both outcomes. HML range was greater in the laboratory and hallway compared to the indoor open and outdoor pathway settings for slow walking speed only. HAP range was lower in the outdoor pathway compared to all indoor settings at slow and preferred walking speeds. Differences in HAP range between settings was more pronounced at the slow speed condition. Across setting and speed conditions, HML range was greater for males compared to females. SIGNIFICANCE: Young adults may alter their balance control strategy depending on the setting (laboratory, indoor open and outdoor pathway), particularly at slow speeds. Researchers and clinicians are cautioned not to assume walking in laboratory settings reflects walking in all settings nor that males and females can be examined as a single group.

6.
Front Neurol ; 15: 1332859, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38327624

RESUMEN

Introduction: Neurological conditions account from more than half of Canadians requiring chronic care. Both physical activity and the development of a self-management skillset are critical components supporting individuals with chronic health conditions. "NeuroSask: Active and Connected" is a virtual chronic disease management program offering twice weekly neuro-physiotherapist directed "active" exercise sessions, followed by weekly knowledge-exchange "connect" sessions with invited guest experts. NeuroSask was launched April 2020 in response to the restricted services and supports for people with neurological conditions. The program aimed to provide seated physical activity, social interaction, and access to expertise in neurological conditions and neurorehabilitation. A program evaluation of NeuroSask was conducted to gain participants' perspectives. Methods: All participants registered for the NeuroSask program were invited to complete optional online surveys (SurveyMonkey) circulated by email at 3 occasions post-program launch: 10 weeks, 1 year, and 2 years. Participants could complete any one or all of the surveys, at their discretion. The number of potential respondents changed dependent on the total number of participants registered for NeuroSask at the time the survey was circulated. Questions were co-designed by multi-stakeholder team members. Descriptive statistics were used for closed-ended questions and a reflexive thematic analysis was completed with coding conducted in NVivo 12 Plus for open-ended text. Results: Response rates (participants/registrants) were as follows: 10-week survey 260/793, one year survey 326/1224, and 2-year survey 434/1989. 90% of participants reported being in either the age categories of 40-59 years or above 60 years. 75% of both survey respondents and program registrants were female. 70% of both survey respondents and program registrants reported a diagnosis of multiple sclerosis and 30% reported other neurological conditions. Survey respondents were from all ten Canadian provinces, with 45% reporting living outside of large cities. Respondents reported preferring online vs. in person format for this type of programming. Three main themes, and eight corresponding subthemes were identified highlighting the perceived impact and key components of the NeuroSask program: Theme 1 "together in a positive and encouraging environment" (subthemes 1a: connection, 1b: empowerment); Theme 2 "access to enthusiastic qualified leaders from home" (subthemes 2a: leader characteristics, 2b: accessibility, 2c: program logistics); Theme 3 "being able to enjoy everyday life" (subthemes 3a: symptom benefits and beyond, 3b: carry-over, 3c: keep going, please do not cancel). Conclusion: NeuroSask is an example of an accessible and meaningful virtual approach to providing ongoing support for some individuals with neurological conditions. It was perceived as beneficial for fostering community and connection in a positive environment with perceived benefits extending beyond symptom management to participant reported improvements in function, daily life, and disease experience.

7.
Disabil Rehabil ; 45(7): 1147-1153, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-35341443

RESUMEN

PURPOSE: There is a gap in research on how best to support exercise in moderate to severe MS. The objective of this study is to share perspectives of people living with MS and physiotherapists on their experiences in a randomized clinical trial of online physiotherapy vs. an active comparator. METHODS: Semi-structured exit interviews were conducted with volunteer participants from the online and comparator arms of the trial, and focus groups were held with study physiotherapists. Transcripts were analyzed using reflexive thematic analysis. RESULTS: Perspectives from participants with MS yielded three themes: usability of their program, utility of their program, and motivation to participate. Visual and dexterity impairments limited the usability of the online program. Having an opportunity "to be pushed" was valued by participants in both trial arms. Motivation to exercise was variable, and participants desired periodic face-to-face contact with their physiotherapists. Perspectives from trial physiotherapists yielded similar and complementary findings concerning usability and utility. CONCLUSIONS: Participants with MS and physiotherapists found the online physiotherapy platform useful for supporting exercise, yet they identified some limitations. As the appeal of online platforms has increased since the pandemic, it will be important to consider the needs of people with moderate to severe MS. TRIAL REGISTRATION NUMBER: NCT03039400.IMPLICATIONS FOR REHABILITATIONPeople with moderate-to-severe MS and physiotherapists involved in a clinical trial found online physiotherapy useful for supporting exercise. Physiotherapists and participants using the online program desired improved platform accommodations for people living with MS with visual and dexterity impairments.Physiotherapists and people living with MS from both the online exercise program and comparator groups perceived a need for more face-to-face contact and opportunities to build therapeutic alliance.Perspectives from prescribing physiotherapists and people living with MS about supporting exercise online may have practice implications during and post-pandemic.


Asunto(s)
Esclerosis Múltiple , Fisioterapeutas , Humanos , Modalidades de Fisioterapia , Ejercicio Físico , Terapia por Ejercicio
8.
Spinal Cord Ser Cases ; 9(1): 1, 2023 01 16.
Artículo en Inglés | MEDLINE | ID: mdl-36646680

RESUMEN

STUDY DESIGN: Cross-sectional equipment inventory. OBJECTIVES: The objective of this study was to describe the equipment used in activity-based therapy (ABT) programs for individuals with spinal cord injury or disorder (SCI/D) across Canada. SETTINGS: Publicly funded and private SCI/D care settings. METHODS: A survey on equipment available for ABT for different therapeutic goals was answered by Canadian sites providing SCI/D rehabilitation. Information about the setting and type of client were also collected. The survey results were compiled into an inventory of the reported types and use of ABT related equipment, with equipment grouped into varying levels of technology. Descriptive statistics and qualitative descriptive analysis were used to answer the questions: (1) 'who' used the equipment, (2) 'what' types of equipment are used, (3) 'why' (i.e., for which therapeutic goals), and (4) 'how' it is used. RESULTS: Twenty-two sites from eight Canadian provinces completed the survey. Reported equipment was classified into 5 categories (from low to high-tech). Most equipment reported was used to train balance. The high-tech equipment reported as available, was mostly used for walking training and strengthening of the lower limbs. Low-tech equipment was reported as being used most frequently, while high-tech devices, although available, were reported as infrequently or rarely used. CONCLUSIONS: A large spectrum of equipment with varying levels of technology were reported as available, but were inconsistently used to provide ABT interventions across sites. In order to increase the clinical use of available equipment for ABT, education tools such as protocols regarding ABT principles and implementation are needed.


Asunto(s)
Traumatismos de la Médula Espinal , Caminata , Humanos , Estudios Transversales , Canadá , Traumatismos de la Médula Espinal/rehabilitación , Tecnología
9.
Contemp Clin Trials ; 127: 107142, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36878390

RESUMEN

INTRODUCTION: Physical rehabilitation restores lost function and promotes brain plasticity in people with Multiple Sclerosis (MS). Research groups worldwide are testing the therapeutic effects of combining non-invasive neuromodulation with physical therapy (PT) to further improve functional outcomes in neurological disorders but with mixed results. Whether such devices enhance function is not clear. We present the rationale and study design for a randomized controlled trial evaluating if there is additional benefit to the synergistic pairing of translingual neurostimulation (TLNS) with PT to improve walking and balance in MS. METHODS AND ANALYSIS: A parallel group [PT + TLNS or PT + Sham], quadruple-blinded, randomized controlled trial. Participants (N = 52) with gait and balance deficits due to relapsing-remitting or progressive MS, who are between 18 and 70 years of age, will be recruited through patient registries in Newfoundland & Labrador and Saskatchewan, Canada. All participants will receive 14 weeks of PT while wearing either a TLNS or sham device. Dynamic Gait Index is the primary outcome. Secondary outcomes include fast walking speed, subjective ratings of fatigue, MS impact, and quality of life. Outcomes are assessed at baseline (Pre), after 14 weeks of therapy (Post), and 26 weeks (Follow Up). We employ multiple methods to ensure treatment fidelity including activity and device use monitoring. Primary and secondary outcomes will be analyzed using linear mixed-effect models. We will control for baseline score and site to test the effects of Time (Post vs. Follow-Up), Group and the Group x Time interaction as fixed effects. A random intercept of participant will account for the repeated measures in the Time variable. Participants must complete the Post testing to be included in the analysis. ETHICS AND DISSEMINATION: The Human Research Ethics Boards in Newfoundland & Labrador (HREB#2021.085) & Saskatchewan (HREB Bio 2578) approved the protocol. Dissemination avenues include peer-reviewed journals, conferences and patient-oriented communications.


Asunto(s)
Esclerosis Múltiple , Humanos , Esclerosis Múltiple/rehabilitación , Calidad de Vida , Recurrencia Local de Neoplasia , Caminata , Modalidades de Fisioterapia , Terapia por Ejercicio/métodos , Ensayos Clínicos Controlados Aleatorios como Asunto
10.
Front Neurol ; 14: 1101521, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36937527

RESUMEN

Objective: The literature that has examined healthcare access and needs of the multiple sclerosis (MS) population is limited. Currently, no research has engaged healthcare providers delivering services to this population to examine their perspectives on the provision of MS care in Canada. We aimed to summarize what good MS care should look like according to Canadian healthcare providers working with people with MS, and to identify the supports and resources required, within their care setting, to enable this standard of care. Methods: A qualitative descriptive approach was taken to analyze data from participants who responded to additional open-ended survey questions, within a larger "MS Models of Care Survey" targeting Canadian healthcare providers working with persons with MS. Results: Currently, a gap exists between what healthcare providers working with persons with MS believe MS care should encompass and what they are able to offer. Participants emphasized that their MS clinics are currently understaffed and patient-to-provider ratios are high, leaving very little time to address the array of healthcare concerns their patients present with. The healthcare providers overwhelmingly described that moving toward multidisciplinary team-based MS care that includes appropriate numbers of MS-trained neurologists, nurses, physiotherapists, occupational therapists, and mental health providers working within one location would be their prioritized approach to comprehensively managing MS care. This model of care enables all professionals to effectively coordinate care and use their time efficiently by only focusing on their area of expertise, all while meeting the needs of their patient in one setting, reducing wait-times and improving overall care. Conclusion: To meet the care needs of Canadians with MS, the healthcare system must consider standardizing and funding multidisciplinary team-based MS clinics, comparable to Stroke units, which continue to show favorable health outcomes after years of implementation.

11.
BMC Sports Sci Med Rehabil ; 15(1): 175, 2023 Dec 21.
Artículo en Inglés | MEDLINE | ID: mdl-38129896

RESUMEN

BACKGROUND: Multiple sclerosis (MS) is a degenerative disease of the central nervous system (CNS) that disrupts walking function and results in other debilitating symptoms. This study compares the effects of 'task-oriented exercise' against 'generalized resistance and aerobic exercise' and a 'stretching control' on walking and CNS function in people with MS (PwMS). We hypothesize that task-oriented exercise will enhance walking speed and related neural changes to a greater extent than other exercise approaches. METHODS: This study is a single-blinded, three-arm randomized controlled trial conducted in Saskatchewan, Canada. Eligible participants are those older than 18 years of age with a diagnosis of MS and an expanded Patient-Determined Disease Steps (PDDS) score between 3 ('gait disability') and 6 ('bilateral support'). Exercise interventions are delivered for 12 weeks (3 × 60-min per week) in-person under the supervision of a qualified exercise professional. Interventions differ in exercise approach, such that task-oriented exercise involves weight-bearing, walking-specific activities, while generalized resistance and aerobic exercise uses seated machine-based resistance training of major upper and lower body muscle groups and recumbent cycling, and the stretching control exercise involves seated flexibility and relaxation activities. Participants are allocated to interventions using blocked randomization that stratifies by PDDS (mild: 3-4; moderate: 5-6). Assessments are conducted at baseline, post-intervention, and at a six-week retention time point. The primary and secondary outcome measures are the Timed 25-Foot Walk Test and corticospinal excitability for the tibialis anterior muscles determined using transcranial magnetic stimulation (TMS), respectively. Tertiary outcomes include assessments of balance, additional TMS measures, blood biomarkers of neural health and inflammation, and measures of cardiorespiratory and musculoskeletal fitness. DISCUSSION: A paradigm shift in MS healthcare towards the use of "exercise as medicine" was recently proposed to improve outcomes and alleviate the economic burden of MS. Findings will support this shift by informing the development of specialized exercise programming that targets walking and changes in corticospinal excitability in PwMS. TRIAL REGISTRATION: ClinicalTrials.gov, NCT05496881, Registered August 11, 2022. https://classic. CLINICALTRIALS: gov/ct2/show/NCT05496881 . Protocol amendment number: 01; Issue date: August 1, 2023; Primary reason for amendment: Expand eligibility to include people with all forms of MS rather than progressive forms of MS only.

12.
Int J Stroke ; 18(1): 117-122, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-36129364

RESUMEN

RATIONALE: Clinical practice guidelines support structured, progressive protocols for improving walking after stroke. Yet, practice is slow to change, evidenced by the little amount of walking activity in stroke rehabilitation units. Our recent study (n = 75) found that a structured, progressive protocol integrated with typical daily physical therapy improved walking and quality-of-life measures over usual care. Research therapists progressed the intensity of exercise by using heart rate and step counters worn by the participants with stroke during therapy. To have the greatest impact, our next step is to undertake an implementation trial to change practice across stroke units where we enable the entire unit to use the protocol as part of standard of care. AIMS: What is the effect of introducing structured, progressive exercise (termed the Walk 'n Watch protocol) to the standard of care on the primary outcome of walking in adult participants with stroke over the hospital inpatient rehabilitation period? Secondary outcomes will be evaluated and include quality of life. METHODS AND SAMPLE SIZE ESTIMATES: This national, multisite clinical trial will randomize 12 sites using a stepped-wedge design where each site will be randomized to deliver Usual Care initially for 4, 8, 12, or 16 months (three sites for each duration). Then, each site will switch to the Walk 'n Watch phase for the remaining duration of a total 20-month enrolment period. Each participant will be exposed to either Usual Care or Walk 'n Watch. The trial will enroll a total of 195 participants with stroke to achieve a power of 80% with a Type I error rate of 5%, allowing for 20% dropout. Participants will be medically stable adults post-stroke and able to take five steps with a maximum physical assistance from one therapist. The Walk 'n Watch protocol focuses on completing a minimum of 30 min of weight-bearing, walking-related activities (at the physical therapists' discretion) that progressively increase in intensity informed by activity trackers measuring heart rate and step number. STUDY OUTCOME(S): The primary outcome will be the change in walking endurance, measured by the 6-Minute Walk Test, from baseline (T1) to 4 weeks (T2). This change will be compared across Usual Care and Walk 'n Watch phases using a linear mixed-effects model. Additional physical, cognitive, and quality of life outcomes will be measured at T1, T2, and 12 months post-stroke (T3) by a blinded assessor. DISCUSSION: The implementation of stepped-wedge cluster-randomized trial enables the protocol to be tested under real-world conditions, involving all clinicians on the unit. It will result in all sites and all clinicians on the unit to gain expertise in protocol delivery. Hence, a deliberate outcome of the trial is facilitating changes in best practice to improve outcomes for participants with stroke in the trial and for the many participants with stroke admitted after the trial ends.


Asunto(s)
Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular , Adulto , Humanos , Calidad de Vida , Caminata/fisiología , Rehabilitación de Accidente Cerebrovascular/métodos , Modalidades de Fisioterapia , Terapia por Ejercicio/métodos , Resultado del Tratamiento , Ensayos Clínicos Controlados Aleatorios como Asunto
13.
Front Neurol ; 13: 904757, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35669877

RESUMEN

Objective: Little work has evaluated integrated models of care in multiple sclerosis (MS) and the composition of MS care teams across Canada is largely unknown. We aimed to gather information regarding existing models of MS care across Canada, and to assess the perceptions of health care providers (HCPs) regarding the models of care required to fully meet the needs of the person with MS. Methods: We conducted an anonymous online survey targeting Canadian HCPs working in MS Clinics, and neurologists delivering MS care whether or not they were based in an MS Clinic. We queried the types of HCPs delivering care within formal MS Clinics, wait times for HCPs, the perceived importance of different types of HCPs for good quality care, assessments conducted, and whether clinic databases were used. We summarized survey responses using descriptive statistics. Results: Of the 716 HCPs to whom the survey was distributed, 100 (13.9%) people responded. Of the 100 respondents, 85 (85%) indicated that their clinical practice included people with MS and responded to specific questions about clinical care. The most common types of providers within MS Clinics with integrated models of care were neurologists and MS nurses. Of 23 responding MS Clinics, 10 (43.5%) indicated that there were not enough neurologists, and 16 (69.6%) indicated that there were not enough non-neurologist HCPs to provide adequate care. More than 50% of clinics reported wait times exceeding 3 months for physiatrists, physiotherapists, psychiatrists, psychologists, neuropsychologists and urologists; in some clinics wait times for these providers exceeded 1 year. Multiple disciplines were identified as important or very important for delivering good quality MS care. Over 90% of respondents thought it was important for neurologists, nurse practitioners, MS nurses and psychiatrists to be co-located within MS Clinics. Conclusion: Canadian HCPs viewed the ideal MS service as being multidisciplinary in nature and ideally integrated. Efforts are needed to improve timely access to specialized MS care in Canada, and to evaluate how outcomes are influenced by access to care.

14.
Mult Scler Int ; 2021: 5531693, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34327022

RESUMEN

BACKGROUND: Knowledge translation (KT) models that represent an individual's perspective are a sign of effective KT. Some common challenges in KT include participant engagement, organization of the team, and time demands of the participants. We implemented a unique tripartite KT program to (1) share current research, (2) inform persons living with multiple sclerosis (pwMS) about the clinical research process, and (3) invite pwMS to immediately participate in clinical research. The primary aim was to determine participants' perspectives on the value and acceptability of an experiential research program offered at a patient and family educational conference. METHODS: A team of researchers identified factors that would impact the logistics of hosting an experiential research program at a conference and designed a unique tripartite KT program. The local multiple sclerosis (MS) society was engaged to select an appropriate location and invite stakeholders to the conference. A survey to determine participants' perspectives on the value and acceptability of the experiential research program was developed and analyzed. RESULTS: 65 pwMS attended the conference, and 44 (67.7%) participated in the on-site experiential research program. 72.7% of the participants completed the survey, of which 93.8% stated that they strongly agree or agree with the following statements: "Did you feel like participating in research today was a valuable experience to you?" and "Did you feel like you were contributing to MS research?" 100% of the participants agreed or strongly agreed when asked "would you like to see more research activities taking place at these kinds of events?" CONCLUSIONS: This paper describes the logistics and challenges of conducting an experiential KT program, which proved to be rewarding for pwMS. The majority of pwMS attending the conference agreed to participate in the on-site experiential research program and an overwhelming majority of participants felt the experience was valuable.

15.
Int J MS Care ; 22(4): 178-186, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32863786

RESUMEN

BACKGROUND: Although physical activity (PA) is considered the most important nonpharmaceutical intervention for persons with multiple sclerosis (MS), less than 20% of people with MS are engaging in sufficient amounts to accrue benefits. Promotion of PA is most effective when combined with additional behavior change strategies, but this is not routinely done in clinical practice. This study aimed to increase our understanding of current practice and perspectives of health care providers (HCPs) in Canada regarding their use of interventions to address PA behavior in MS management. Investigating HCPs' perspectives on implementing PA behavior change with persons with MS will provide insight into this knowledge-to-practice gap. METHODS: Semistructured focus groups were conducted with 31 HCPs working with persons with MS in Saskatchewan, Canada. Based on interpretive description, data were coded individually by three researchers, who then collaboratively developed themes. Analysis was inductive and iterative; triangulation and member reflections were used. RESULTS: Five themes were established: 1) prescribing, promoting, and impacting wellness with PA; 2) coordinating communication and continuity in practice; 3) timely access to relevant care: being proactive rather than reactive; 4) enhancing programming and community-based resources; and 5) reconciling the value of PA with clinical practice. CONCLUSIONS: The HCPs value PA and want more support with application of behavior change strategies to deliver PA behavioral interventions, but due to the acute and reactive nature of health care systems they feel this cannot be prioritized in practice. Individual- and system-level changes are needed to support consistent and effective use of PA behavioral interventions in MS.

16.
Transl Behav Med ; 10(1): 310-323, 2020 02 03.
Artículo en Inglés | MEDLINE | ID: mdl-30496560

RESUMEN

Initiatives to increase physical activity (PA) are most effective when combined with behavior change strategies (BCS). However, this is not routinely done and perhaps can be attributed to health care professionals' (HCP) lack of confidence and understanding of how to best apply BCS. This review aimed to identify and synthesize the existing literature describing methods used to train HCP to deliver BCS for PA promotion for individuals living with neurological conditions. This review followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. Eight databases were searched for articles describing how HCP were trained on BCS targeting PA and/or exercise for neurological pathology. Two researchers independently screened abstracts and used third-party consensus when needed. Studies must have described the planning/implementation of BCS targeting PA in adults with neurological disorders, with interventions delivered by a HCP. A data extraction table based on the study objective and the Cochrane Consumers and Communication Review Group's data extraction template was used. Risk of bias was assessed using the Quality Assessment Tools for Quantitative and Qualitative Studies. Included studies were also evaluated using the Workgroup for Intervention Development and Evaluation Research (WIDER) recommendations for reporting behavior change intervention content. Extraction and evaluation of risk of bias were completed independently by two researchers. Data were synthesized according to a who, what, when, and how approach. The search yielded 2,616 articles after duplicates removed, with 13 articles, representing eight unique interventions in individuals with spinal cord injury, stroke, multiple sclerosis, and Parkinson's disease included. Methodological quality ranged from strong to weak. Methods used to increase HCP knowledge and use of BCS were heterogeneous. Common training features included multiple resources, multiple sessions, expert input, and ongoing support, but a lack of evaluation of training effectiveness. The BCS were based on Social Cognitive Theory in seven interventions. Physiotherapists were the most common HCP trained. There was considerable variety in how HCP were trained to use BCS and a lack of evaluation of training effectiveness. Future work should include more description of the content and structure of HCP training and a direct measure of effectiveness. Researchers should consider implementation strategies during development and reporting of behavior change interventions. This review was not registered with PROSPERO.


Asunto(s)
Esclerosis Múltiple , Rehabilitación Neurológica , Adulto , Ejercicio Físico , Personal de Salud , Humanos , Investigación Cualitativa
17.
Int J MS Care ; 22(5): 208-214, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33177956

RESUMEN

BACKGROUND: Options to support adherence to physical activity in moderate-to-severe multiple sclerosis (MS) are needed. The primary aim was to evaluate adherence to a Web-based, individualized exercise program in moderate-to-severe MS. Secondary aims explored changes in 29-item Multiple Sclerosis Impact Scale, Hospital Anxiety and Depression Scale (HADS), grip strength, Timed 25-Foot Walk test, and Timed Up and Go (TUG) results. METHODS: Participants were randomized (2:1) to a physiotherapist-guided Web-based home exercise program or a physiotherapist-prescribed written home exercise program. The primary outcome was adherence (number of exercise sessions over 26 weeks). Secondary outcomes were described in terms of means and effect sizes. RESULTS: There were 48 participants: mean ± SD age, 54.3 ± 11.9 years; disease duration, 19.5 ± 11.0 years; and Patient-Determined Disease Steps scale score, 4.4 ± 1.6. There was no significant difference in mean ± SD adherence in the Web-based group (38.9 ± 28.1) versus the comparator group (34.6 ± 40.8; U = 198.5, P = .208, Hedges' g = 0.13). Nearly 50% of participants (23 of 48) exercised at least twice per week for at least 13 of the 26 weeks. Adherence was highest in the Web-based subgroup of wheelchair users. Medium effect sizes were found for the HADS anxiety subscale and in ambulatory participants for TUG. There were no adverse events. CONCLUSIONS: There was no difference in exercise adherence between the Web-based and active comparator groups. There was no worsening of secondary outcomes or adverse events, supporting the safety of Web-based physiotherapy. More research is needed to determine whether wheelchair users might be most likely to benefit from Web-based physiotherapy.

18.
Int J MS Care ; 22(1): 43-51, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32123528

RESUMEN

BACKGROUND: Due to the chronic and incurable nature of the autoimmune disease multiple sclerosis (MS), some people with MS will seek out alternative therapeutic approaches. Helminth immunotherapy, the deliberate inoculation with helminthic parasites as an intervention to prevent, delay, or minimize progression of autoimmune disorders, is one such approach gaining traction in academic research and with the public. Herein, we explored the perspectives of people with MS regarding helminth immunotherapy and its use in disease management. METHODS: Interpretive description, a qualitative research approach, was applied to data extracted from online forums. Multiple investigators independently identified, extracted, and analyzed data to develop preliminary codes. Inductive thematic analysis and triangulation were then used to collaboratively establish themes. RESULTS: Four main themes were generated: experience of living with MS, influential factors in contemplating helminth immunotherapy, logistics of helminth immunotherapy, and concerns about helminth immunotherapy. CONCLUSIONS: There was a general consensus in publicly available online forums that conventional therapies do not provide meaningful improvement for some people with MS. These people may seek alternative therapies such as helminth immunotherapy. Information on helminth immunotherapy from internet resources (eg, blogs and social media forums) can contain biased and scientifically unsupported opinions. Messages of efficacy and improved quality of life are readily available and may influence people with MS considering helminth immunotherapy as an alternative therapy. Although some people with MS are seeking helminth immunotherapy, clinical trial data do not currently support its use for people with MS.

20.
Trials ; 20(1): 664, 2019 Dec 02.
Artículo en Inglés | MEDLINE | ID: mdl-31791380

RESUMEN

BACKGROUND: Multiple sclerosis (MS) is a chronic, degenerative disease of the central nervous system. Because of the long-term and unpredictable nature of the disease, the burden of MS is significant from both a patient and societal perspective. Despite a recent influx of disease-modifying therapies to treat MS, many individuals continue to experience disability that negatively affects productivity and quality of life. Previous research indicates that physical activity has a positive impact on walking function in individuals with MS, in addition to the usual beneficial effects on overall health. However, most people with MS are not active enough to gain these benefits, and a lack of support to initiate and maintain physical activity has been identified as a major barrier. This study will evaluate the impact of a novel intervention involving individualised behaviour change strategies delivered by neurophysiotherapists on increasing physical activity levels in individuals with MS who are currently inactive. METHODS/DESIGN: This single-blind, parallel-group, randomised controlled trial will be conducted in Saskatchewan, Canada. Eligible participants include individuals with MS who are ambulatory but identified as currently inactive by the self-reported Godin Leisure-Time Exercise Questionnaire (GLTEQ). The intervention will be delivered by neurophysiotherapists and includes individualised behaviour change strategies aimed at increasing physical activity over a 12-month period. The control group will receive usual care during the 12-month study period. The primary outcome is the change in physical activity level, as measured by the change in the GLTEQ score from baseline to 12 months. Secondary outcomes include the change in patient-reported outcome measures assessing MS-specific symptoms, confidence and quality of life. DISCUSSION: Physical activity has been identified as a top research priority by the MS community. Findings from this novel study may result in new knowledge that could significantly impact the management and overall health of individuals with MS. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04027114. Registered on 10 July 2019.


Asunto(s)
Ejercicio Físico , Esclerosis Múltiple/psicología , Ensayos Clínicos Controlados Aleatorios como Asunto , Femenino , Humanos , Masculino , Evaluación de Resultado en la Atención de Salud , Autoinforme , Método Simple Ciego , Encuestas y Cuestionarios
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