Perspectives on medical assistance in dying amongst persons with traumatic spinal cord injury: a qualitative study.

STUDY DESIGN: Qualitative. OBJECTIVE: To explore the perspectives of persons living with chronic (>5 y) traumatic spinal cord injuries (tSCI) concerning medical assistance in dying (MAID). SETTING: Saskatchewan, Canada. METHODS: Qualitative exploratory using an interpretative description methodology. Individual semi-structured interviews were held with online video conferencing. Interviews were analyzed using codebook thematic analysis. RESULTS: Ten persons with a chronic (>5 y) tSCI participated (seven males, three females; age 20s-50s; spinal cord level C2-T10). Participants expressed support for persons living with SCI having access to MAID, specifically in the context of preserving autonomy and respecting equality when compared with able-bodied individuals. However, some were concerned about the implications of access to MAID solely based on the diagnosis of a SCI. Participants also emphasized the variability in the initial personal response to injury and expressed concern about MAID being immediately available after injury. They explained the significance and necessity of reflecting on the injury in what can be a lengthy process of adjustment and acceptance. Participants also discussed the importance of hope and highlighted the irreplaceable value of peer support in shaping hope throughout rehabilitation and the need for compassionate, comprehensive, and continuous care to facilitate reintegration and support independence. CONCLUSIONS: Access to MAID provides a greater range of choices for individuals with tSCI but could increase deaths occurring before optimal adaptation and adjustment. The involvement of inter-professional teams, mental health specialists and peers is important to frame hope and understand the potential of a fulfilling life with a tSCI.

Prevalence of Extracranial Venous Narrowing on Magnetic Resonance Venography Is Similar in People With Multiple Sclerosis, Their Siblings, and Unrelated Healthy Controls: A Blinded, Case-Control Study.

PURPOSE: The study sought to assess and compare the prevalence of narrowing of the major extracranial veins in subjects with multiple sclerosis and controls, and to assess the sensitivity and specificity of magnetic resonance venography (MRV) for describing extracranial venous narrowing as it applies to the chronic cerebrospinal venous insufficiency theory, using catheter venography (CV) as the gold standard. METHODS: The jugular and azygos veins were assessed with time-of-flight MRV in this assessor-blinded, case-control study of subjects with multiple sclerosis, their unaffected siblings, and unrelated controls. The veins were evaluated by diameter and area, and compared with CV. Collateral vessels were also analyzed for maximal diameter, as a potential indicator of compensatory flow. RESULTS: A high prevalence of extracranial venous narrowing was demonstrated in all study groups, collectively up to 84% by diameter criteria and 90% by area, with no significant difference between the groups when assessed independently (P = .34 and .63, respectively). There was high interobserver variability in the reporting of vessel narrowing (kappa = 0.32), and poor vessel per vessel correlation between narrowing on MRV and CV (kappa = 0.064). Collateral neck veins demonstrated no convincing difference in maximum size or correlation with jugular narrowing. CONCLUSION: There is a high prevalence of narrowing of the major extracranial veins on MRV in all 3 study groups, with no significant difference between them. These findings do not support the chronic cerebrospinal venous insufficiency theory. Although MRV has shown a high sensitivity for identifying venous narrowing, time-of-flight imaging demonstrates poor interobserver agreement and poor specificity when compared with the gold standard CV.

Effectiveness of home visiting programs on child outcomes: a systematic review.

BACKGROUND: The effectiveness of paraprofessional home-visitations on improving the circumstances of disadvantaged families is unclear. The purpose of this paper is to systematically review the effectiveness of paraprofessional home-visiting programs on developmental and health outcomes of young children from disadvantaged families. METHODS: A comprehensive search of electronic databases (e.g., CINAHL PLUS, Cochrane, EMBASE, MEDLINE) from 1990 through May 2012 was supplemented by reference lists to search for relevant studies. Through the use of reliable tools, studies were assessed in duplicate. English language studies of paraprofessional home-visiting programs assessing specific outcomes for children (0-6 years) from disadvantaged families were eligible for inclusion in the review. Data extraction included the characteristics of the participants, intervention, outcomes and quality of the studies. RESULTS: Studies that scored 13 or greater out of a total of 15 on the validity tool (n = 21) are the focus of this review. All studies are randomized controlled trials and most were conducted in the United States. Significant improvements to the development and health of young children as a result of a home-visiting program are noted for particular groups. These include: (a) prevention of child abuse in some cases, particularly when the intervention is initiated prenatally; (b) developmental benefits in relation to cognition and problem behaviours, and less consistently with language skills; and (c) reduced incidence of low birth weights and health problems in older children, and increased incidence of appropriate weight gain in early childhood. However, overall home-visiting programs are limited in improving the lives of socially high-risk children who live in disadvantaged families. CONCLUSIONS: Home visitation by paraprofessionals is an intervention that holds promise for socially high-risk families with young children. Initiating the intervention prenatally and increasing the number of visits improves development and health outcomes for particular groups of children. Future studies should consider what dose of the intervention is most beneficial and address retention issues.

Physiotherapist and participant perspectives from a randomized-controlled trial of physiotherapist-supported online vs. paper-based exercise programs for people with moderate to severe multiple sclerosis.

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.

Perspectives on walking from people with multiple sclerosis and reactions to video self-observation.

Purpose: People with multiple sclerosis (MS) rank walking among the most challenging aspects of their condition. A greater understanding of people's perspectives concerning their walking may help to prioritize walking outcomes and strategies for optimizing walking. The purpose was to explore perceptions of walking in people with MS and to describe their reactions after observing themselves walk on video.Materials and methods: An interpretive thematic analysis study using face-to-face, semi-structured interviews was conducted with 14 people who self-identified a change in their walking due to MS. Participants were video-recorded walking and watched their video during the interview.Results: Four themes were identified: "awareness," "acceptance," "constant change," and "increased effort." People with MS develop awareness of how their walking performance looks and awareness of constantly-changing internal factors and external factors which impact their walking. Awareness of change in fatigue, temperature, terrain, and the use of aids in particular are perceived relevant to walking and to impact the effort required to walk. People with MS also describe differences in their acceptance of how others view their walking and the changes related to walking. An analogy with a marionette performing describes how people perceive walking as no longer automatic; instead walking requires the person to consciously pull the strings to walk. An increase in both the physical and cognitive effort is required to walk and an awareness and acceptance of a variety of changes in oneself and the lived world may help or hinder walking. People with MS are willing to watch themselves walk on video and are not surprised by what they observe.Conclusions: People with MS develop a learned self-awareness with variable levels of acceptance about their walking function and what it looks like. The perceptions on walking from persons with MS suggest that focusing on reducing the effort to walk and minimizing the constantly-changing variables may help to optimize walking.Implications for rehabilitationPeople with multiple sclerosis are challenged by the increased effort and constant change required to walk in their day-to-day lives.A focus on minimizing both the effort to walk and the changing variables (i.e., fluctuating symptoms and environmental factors) is warranted.People with multiple sclerosis develop a learned awareness of how they walk and how their walking looks.Acceptance of loss of walking function is variable.Video self-observation is a feasible tool which warrants further exploration for enhancing acceptance of walking function and accommodating strategies.

Adherence to Physiotherapy-Guided Web-Based Exercise for Persons with Moderate-to-Severe Multiple Sclerosis: A Randomized Controlled Pilot Study.

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.

Examining physician counselling to promote the adoption of physical activity.

BACKGROUND: While the benefits of physical activity are generally recognized, over half of adult Canadians are not active enough to receive those benefits. Physicians may influence patient activity through counselling; however, research is inconsistent regarding their effectiveness in doing so. Increasing patients' use of self-regulatory skills in managing their activity and additional telephone support are suggested as two means of improving physician counselling. When assessing the effectiveness of physician counselling, it may be important to measure both outcome and treatment adherence. We compared physician-directed activity counselling (modified PACE protocol) with a modified PACE protocol augmented with telephone-based counselling for patient support for both outcome and treatment adherence. METHODS: Physicians counselled 90 patients using a modified PACE protocol that included self-regulatory skills. Physical activity was assessed by questionnaire at baseline (prior to counselling) and one month later. Participants were divided into two groups: counselling (modified PACE counselling) and enhanced counselling (modified PACE counselling plus telephone support). RESULTS: The main outcome (mean energy expenditure) and secondary outcomes of treatment adherence (frequency, frequency of moderate activity, and duration) significantly increased over time (p < 0.05). No significant interactions between group and time were found. INTERPRETATION: Our results support the effectiveness of physician counselling for activity that included the use of self-regulation skills. The effectiveness of telephone support over and above that of physician counselling was not supported. Our results demonstrate that assessing treatment adherence provides a means of discerning whether the counselling intervention was delivered as intended.

Shifting the balance: conceptualising empowerment in individuals with spinal cord injury.

Empowerment is believed to be an essential element in self-management of disease and the promotion of self-efficacy, and can be defined as the ability of individuals to increase control over aspects of their lives. In contrast, powerlessness in individuals with chronic illness can occur when they perceive that they lack the capacity, authority or resources to affect an outcome. Individuals with spinal cord injuries (SCIs) are at risk for powerlessness and have the potential to become empowered, but these concepts have not been explored within their context. The purpose of this study was to explore how individuals with SCI enact the empowerment process using Lord's (1991) process of empowerment framework. This study used a secondary analysis of a data set obtained from a mixed methods study exploring access to health and social care for 23 persons with SCI in Saskatchewan, Canada. The primary study data were collected from September 2012 to January 2013. The secondary analysis of data utilised a deductive thematic analysis approach and findings were conceptualised and applied to a model that represents the shift in balance between powerlessness and empowerment in individuals with SCI.

Total knee arthroplasty in multiple sclerosis.

We present a case report of total knee arthroplasty complicated by spasticity and contractures in a patient with multiple sclerosis (MS). Four previous case reports in the literature describe adverse outcomes after total knee arthroplasty in persons with MS secondary to severe spasticity. Preoperative, intraoperative, and postoperative considerations for persons with MS, which may help to improve functional outcomes, are discussed. Prospective research is needed among persons with MS to help determine the timing and selection of persons for arthroplasty and to minimize complications related to spasticity.

Predictors of institutionalization for people with multiple sclerosis.

BACKGROUND: Multiple Sclerosis (MS) is a chronic, progressive disease of the central nervous system with a high prevalence in Canada. While the disease course is highly variable, a significant portion of people with MS may spend more than 10 years living with severe disability, and many of those will eventually require full time institutional care. Despite the high personal and economic cost of this care, little is known about predictors of institutionalization. OBJECTIVE: The objective of this study was to identify predictors of institutionalization. METHODS: Longitudinal data from a university MS clinic database were extracted to explore nursing home placement over time of an urban subgroup. Cox regression analysis was performed with age of MS onset and sex, as well as baseline information obtained at the first MS clinic assessment: MS course, Kurtzke Expanded Disability Status Scale score, and functional system scores. RESULTS: Older age of onset (p = .019) and higher baseline scores in specific functional systems (cerebellar, bowel/bladder, brainstem, and cerebral/mental) were significant (p = .000, p = .000, p = .001, p = .000 respectively) predictors of nursing home placement. CONCLUSIONS: Patients with older age of MS onset and those with baseline impairment in specific functional systems (cerebellar, bowel/bladder, brainstem, and cerebral/mental) may be at higher risk for future institutionalization and should be assessed with particular care to determine potential avenues of support to minimize this.

Step-length variability in minimally disabled women with multiple sclerosis or clinically isolated syndrome.

Gait is one of the most frequently impaired bodily functions in multiple sclerosis (MS). Determining abnormal parameters of gait in early MS could influence MS treatment and rehabilitation. The purpose of this study was to determine whether increased step-length variability could be detected in minimally disabled patients with MS or clinically isolated syndrome (CIS) using a sensored walkway gait analysis system. Nine participants with MS/CIS and nine age- and gender-matched controls were recruited for this study. MS/CIS participants underwent a neurologic examination, and all participants completed a screening interview. Each participant completed three walks at a self-selected pace and three walks at a brisk pace across the GAITRite walkway (MAP/CIR Inc, Havertown, PA). Mean values for step-length variability, step length, and velocity were calculated for each participant's self-selected and brisk trials. Independent t tests were used to compare MS/CIS participants with controls, and effect sizes were calculated. Step-length variability in the left leg at the self-selected pace was found to be greater in participants with MS/CIS than in controls, although no significant differences were found in velocity or step length. Step-length variability measurement shows promise in detecting subtle gait dysfunction. Larger, prospective studies exploring step-length variability may determine its clinical viability for detecting subtle gait dysfunction and could lead to improved prognostication of disability progression in MS.

Attributions and self-regulatory efficacy for health-related physical activity.

Two studies were conducted to examine associations among past activity behaviour, attributions and self-regulatory efficacy for maintaining physical activity sufficient for health benefits. The studies differed in that success for being sufficiently active for health benefits was externally referenced in the first study, but not in the second. In both studies, results revealed that attributional dimensions improved the prediction of self-regulatory efficacy beyond that of past physical behaviour. Results suggested that while past experience may influence an individual's self-regulatory efficacy to be active enough for health benefits, how people think about their past behaviour also needs to be considered.

Self-regulatory efficacy as a mediator between attributions and intention for health-related physical activity.

The purpose of the present study was to examine whether self-regulatory efficacy would mediate the relationship between individual attributional dimensions for typical exercise levels and intentions to maintain these levels during final exams among university students. Using a prospective design, participants completed measures of attributions for typical activity levels, self-regulatory efficacy and intention to be active during a forthcoming exam period. Results revealed that self-regulatory efficacy partially mediated the relationship between attributional dimensions and intentions for both moderate and mild exercise levels. The results provide initial support for the suggestion that when examining moderate and mild intensity exercise, it is plausible that causality flows from stability of attributions to intentions, at least partially through self-regulatory efficacy.