Katherine Knox

Access to health and support services: perspectives of people living with a long-term traumatic spinal cord injury in rural and urban areas.

Abstract Purpose: To examine the perspectives of persons living with traumatic spinal cord injuries (tSCI) on their access to health and support services. The specific aims were to identify the perceived gaps in access, classify the nature of the perceived gaps and compare differences in perceptions of access between urban and rural participants. Method: Using a descriptive, qualitative approach, semi-structured interviews were conducted with 23 adults living with tSCI, 13 of whom had paraplegia. Ten participants resided in rural areas and 16 were male. Thematic analysis allowed for the identification of patterns, which were then categorized according to the dimensions of access. Results: Opportunities to engage in health-promoting activities through a broad range of health and support services were at times limited, particularly by issues of affordability. In addition to core healthcare services, participants reported the need for complementary therapies, sports and leisure, peer support, equipment and mobility related services. Availability and accessibility of services was limited in some cases for rural participants, although rural residence conferred other valued benefits. Narratives of “not being heard” by providers were common. Conclusions: Maintaining health and well-being in people with tSCI demands access to both conventional health care and support services. Implications for Rehabilitation Access to both health and support services are important to maintaining the health and wellness of people with spinal cord injury. People with spinal cord injuries take an active role in coordinating their health, at times assuming various roles to compensate for perceived shortcomings of health care providers. Negotiating balances of power with gatekeepers in the health and insurance sectors was a key function of the coordinating role assumed by people with spinal cord injury. In order to effectively address the needs of this population, a coordinated interdisciplinary out-reach service, which includes peer support, must cross boundaries to engage sectors beyond traditional health care services, such as insurers and wellness providers.

The Canadian survey of health, lifestyle and ageing with multiple sclerosis: methodology and initial results

Objective People with multiple sclerosis (MS) are living longer so strategies to enhance long-term health are garnering more interest. We aimed to create a profile of ageing with MS in Canada by recruiting 1250 (5% of the Canadian population above 55 years with MS) participants and focusing data collection on health and lifestyle factors, disability, participation and quality of life to determine factors associated with healthy ageing. Design National multicentre postal survey. Setting Recruitment from Canadian MS clinics, MS Society of Canada chapters and newspaper advertisements. Participants People aged 55 years or older with MS symptoms more than 20 years. Outcome measures Validated outcome measures and custom-designed questions examining MS disease characteristics, living situation, disability, comorbid conditions, fatigue, health behaviours, mental health, social support, impact of MS and others. Results Of the 921 surveys, 743 were returned (80.7% response rate). Participants (mean age 64.6±6.2 years) reported living with MS symptoms for an average of 32.9±9.5 years and 28.6% were either wheelchair users or bedridden. There was only 5.4% missing data and 709 respondents provided optional qualitative information. According to data derived from the 2012 Canadian Community Health Survey of Canadians above 55 years of age, older people with MS from this survey sample are about eight times less likely to be employed full-time. Older people with MS were less likely to engage in regular physical activity (26.7%) compared with typical older Canadians (45.2%). However, they were more likely to abstain from alcohol and smoking. Conclusions Despite barriers to participation, we were able to recruit and gather detailed responses (with good data quality) from a large proportion of older Canadians with MS. The data suggest that this sample of older people with MS is less likely to be employed, are less active and more disabled than other older Canadians.

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 participants 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.

How to measure fatigue in epilepsy? The validation of three scales for clinical use

Fatigue can be defined as extreme and persistent tiredness, weakness or exhaustion that could be mental, physical or both. The main objective of this study is to validate three instruments to measure fatigue (Fatigue Symptom Inventory--FSI, Fatigue Assessment Instrument--FAI, Fatigue Severity Scale--FSS) in patients with epilepsy (PWE). We used concurrent validity as a method of validation. Reliability of the fatigue scales was assessed in PWE. We applied the three selected questionnaires plus the Beck Depression Inventory (BDI) in PWE, healthy volunteers (HV) and patients with other neurological conditions. We studied 67 PWE, 34 HV and 56 patients with different neurological conditions. The mean fatigue scores in each group were as follows: (a) for the FSS, the score in HV was 2.6±1.1, in PWE 4.2±1.5, in Patients with multiple Sclerosis (PMS) 4.8±1.4, in Patients with Migraine (PWM) 4.4±1.9, in Patients with radiculopathy (PR) 4.5±0.9. (b) For the FSI, the score in HV was 2.2±1.3, in PWE 3.9±2.3, in PMS 4.1±1.9, in PWM 4.5±2.5, and in PR 5.4±1.4. (c) For the FAI in HV was 3.0±1.1, in PWE 4.2±1.3, in PMS 4.5±0.9, PWM 4.3±1.5, and in PR 4.4±1.4. The correlation between the BDI and the FSS was 0.52 (p<0.001), between the BDI and the FSI was 0.62 (p<0.001), and between the BDI and the FAI was 0.54 (p<0.001). Patients with epilepsy have consistently higher fatigue scores compared healthy controls, and scores that are comparable with other neurological conditions. The FSI, FAI and FSS display concurrent validity and high intra-observer reliability in PWE, indicating that these scales could be utilized for further study of fatigue in epilepsy.

Physical Activity Levels in People with Multiple Sclerosis in Saskatchewan

A substantial body of literature supports the benefits of physical activity for people with multiple sclerosis (MS). This study examined the types and amounts of physical activity reported by a cross-sectional sample of people with MS in Saskatchewan, Canada. Individuals with MS who were seen in the Saskatoon Multiple Sclerosis Clinic in 2006 were mailed a physical activity survey. Demographic information was collected from a confidentiality-protected clinical database. The response rate was 38.2% (108 of 283). No statistically significant differences in baseline demographics were found between responders and nonresponders. Of the responders, 93.5% engaged in some form of moderate physical activity at least once per week. Of these, 15.7% participated in group classes (mean [SD], 2.35 [1.32] days per week), 63.9% performed a minimum of 15 minutes of self-directed continuous activity (mean [SD], 4.5 [1.8] days per week), and 88.0% accumulated short bouts of moderate physical activity totaling a minimum of 2...

Pharmacogenomics of interferon-β in multiple sclerosis: what has been accomplished and how can we ensure future progress?

Multiple sclerosis (MS) is a progressive disorder of the central nervous system, often resulting in significant disability in early adulthood. The field of pharmacogenomics holds promise in distinguishing responders from non-responders to drug treatment. Most studies on genetic polymorphisms in MS have addressed treatment with interferon-β, yet few findings have been replicated. This review outlines the barriers that currently hinder the validity, reproducibility, and inter-study comparison of pharmacogenomics research as it relates to the use of interferon-β. Notably, statistical power, varying definitions of responder status, varying assay and genotyping methodologies, and anti-interferon-β neutralizing antibodies significantly confound existing data. Future work should focus on addressing these factors in order to optimize interferon-β treatment outcomes in MS.

Attributions and self-efficacy for physical activity in multiple sclerosis

Self-efficacy is an important predictor of health-related physical activity in multiple sclerosis (MS). While past experiences are believed to influence efficacy beliefs, the explanations individuals provide for these experiences also may be critical. Our objective was to test the hypothesis that perceived success or failure to accumulate 150 min of physical activity in the previous week would moderate the relationship between the attributional dimension of stability and self-efficacy to exercise in the future. Forty-two adults with MS participated in this cross-sectional descriptive study. Participants completed questions assessing physical activity, perceived outcome for meeting the recommended level of endurance activity, attributions for the outcome, and exercise self-efficacy. Results from hierarchical multiple regression revealed a significant main effect for perceived outcome predicting self-efficacy that was qualified by a significant interaction. The final model, which included perceived outcome, stability, and the interaction term, predicted 37% of the variance in exercise self-efficacy, F (3, 38) = 7.27, p = .001. Our findings suggest that the best prediction of self-efficacy in the MS population may include the interaction of specific attributional dimensions with success/failure at meeting the recommended physical activity dose. Attributions may be another target for interventions aimed at increasing the physical activity in MS.

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.

Establishing the Incidence and Prevalence of Multiple Sclerosis in Saskatchewan

OBJECTIVE To validate a case definition of multiple sclerosis (MS) using health administrative data and to provide the first province-wide estimates of MS incidence and prevalence for Saskatchewan, Canada. METHODS We used population-based health administrative data between January 1, 1996 and December 31, 2015 to identify individuals with MS using two potential case definitions: (1) ≥3 hospital, physician, or prescription claims (Marrie definition); (2) ≥1 hospitalization or ≥5 physician claims within 2 years (Canadian Chronic Disease Surveillance System [CCDSS] definition). We validated the case definitions using diagnoses from medical records (n=400) as the gold standard. RESULTS The Marrie definition had a sensitivity of 99.5% (95% confidence interval [CI] 92.3-99.2), specificity of 98.5% (95% CI 97.3-100.0), positive predictive value (PPV) of 99.5% (95% CI 97.2-100.0), and negative predictive value (NPV) of 97.5% (95% CI 94.4-99.2). The CCDSS definition had a sensitivity of 91.0% (95% CI 81.2-94.6), specificity of 99.0% (95% CI 96.4-99.9), PPV of 98.9% (95% CI 96.1-99.9), and NPV of 91.7% (95% CI 87.2-95.0). Using the more sensitive Marrie definition, the average annual adjusted incidence per 100,000 between 2001 and 2013 was 16.5 (95% CI 15.8-17.2), and the age- and sex-standardized prevalence of MS in Saskatchewan in 2013 was 313.6 per 100,000 (95% CI 303.0-324.3). Over the study period, incidence remained stable while prevalence increased slightly. CONCLUSION We confirm Saskatchewan has one of the highest rates of MS in the world. Similar to other regions in Canada, incidence has remained stable while prevalence has gradually increased.