Multiple sclerosis nursing - what makes it so special?

Background: There are 245 Multiple Sclerosis (MS) specialist nurses (MSSNs) across the UK, with variable caseloads, suggesting inequitable and, where caseloads are particularly high, inadequate provision. Aim: The MS Trust set out to establish a ‘sustainable’ caseload for an MS specialist nurse, providing a high-quality, proactive service to patients with MS throughout the disease trajectory. Method: An expert consensus group agreed standards for MSSN services and assumptions about their working patterns and practices; this process was informed by ‘real world’ data from 40 MSSNs taking part in the MS Trust GEMSS programme. A simple model was then used to determine the sustainable number of cases an MSSN could manage. Results: The model showed that a caseload of 358 people with MS per full-time specialist nurse is sustainable. Conclusions: A number of conditions must be met, including well thought out job plans, sufficient administrative support, an effective home visit policy and a high level of use of clinic capacity.

Purpose The aim of the present study was to adapt and validate the Speech Pathology-Specific Questionnaire for Persons with Multiple Sclerosis (SMS) into the Greek language. Method The study sample consisted of 124 people with multiple sclerosis (PwMS) and 50 healthy controls (HCs). All PwMS underwent cognitive assessment using the Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS). Both PwMS and HCs completed the SMS, the Eating Assessment tool (EAT-10), the Voice Handicap Index (VHI), and the Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39). Result Significant difference was found between PwMS and HCs for the EAT-10, SAQOL-39, the total SMS, and the SMS subscales. Discriminant validity analyses revealed a statistically significant difference between PwMS and HCs for the total and subscales SMS. Convergent validity analyses between the total SMS and the SMS subscales, and scores on the BICAMS, EAT-10, SAQOL-39, and VHI in PwMS were significantly correlated, with exception of the SMS Speech/Voice with the Symbol Digit Modalities Test (SDMT) and the Greek Verbal Learning Test-II (GVLT-II). Scores on the EAT-10, SAQOL-39, and VHI in PwMS were also correlated with the total SMS and the SMS subscales in PwMS, HCs, and the total sample. Construct validity analyses revealed that the total SMS and the SMS subscales were significantly correlated with the Expanded Disability Status Scale (EDSS) and years of education, while no associations were found with regards to age, MS subtype (relapsing-remitting MS [RRMS] vs progressive MS [PMS]), disease duration, or sex. The internal consistency of all items was excellent in PwMS and the total sample (Cronbach’s alpha was >0.7 after deletion of one item), with the exception of two items, which still fell within the acceptable range (>0.6) for PwMS and the total sample. Conclusion The Greek version of the SMS is a reliable and valid patient-reported outcome measure to assess speech-language and swallowing pathology related symptoms in PwMS, and can be used for research and clinical purposes.

Introduction Limitations associated with Multiple Sclerosis (MS) can restrain work capacity and productivity, reducing the possibility to remain in work. Whilst access to sickness compensation might be an option, transitions to other types of employment, such as self-employment, might be considered. We aim to investigate the association of Sickness Absence (SA) and Disability Pension (DP) with employment status among people with multiple sclerosis (PwMS) before and after MS diagnosis compared with people without MS. Methods A prospective longitudinal study was conducted using Swedish register data of 2,779 MS patients diagnosed with MS in 2008-2012 in working ages (20-59 years) and 13,863 population-based matched references. Levels of SA and DP one year before and four years after MS diagnosis were analyzed. Risk of annual SA and DP levels of more than 180 days were compared among the MS patients and references and, their different types of employment, by means of Cox proportional hazard models and adjusted for socio-demographic variables and SA and DP before MS diagnosis. Results In general, people with MS had higher levels of SA and DP before and shortly after MS diagnosis compared to references. PwMS showed a significantly higher probability of reaching over 180 days of SA (Hazard Ratio [HR]=4.89, 95% Confidence interval [CI]=4.43-5.40) and over 180 days of DP (HR = 6.31, 95% CI = 5.46-7.30)) than the references, regardless of type of employment. Moreover, when compared to employed references, self-employed PwMS had similar likelihood to reach over 180 days of SA than employed PwMS, (HR = 4.27, 95% CI = 3.81-4.77) and (HR = 3.83, 95% CI = 2.73-5.38), respectively. In contrast, self-employed references showed less probability (HR = 0.49, 95% CI = 0.31-0.78) to reach over 180 days of SA compared to the employed references. Conclusions In contrast to references, employed and self-employed PwMS had similar probabilities of reaching over 180 days of SA. Key messages This study emphasizes that in Sweden also self-employed have access to sickness compensation, independently of employment status condition. Access to sickness compensation is utilized by PwMS.

Multiple sclerosis (MS) is a disease of the central nervous system. The cause is unknown. There are about 80-160 people with MS per 100,000 population, with twice as many women affected as men. The management of individuals with MS includes treatment of acute relapses and chronic symptoms. The care of MS patients is provided by various healthcare professionals, such as general practitioners (GPs), neurologists, physiotherapists, occupational therapists and nurses. Some MS patients have access to an MS specialist nurse, although this provision varies geographically. The aim of this report is to assess the effectiveness and relative cost-effectiveness of MS specialist nurses in improving care and outcomes for patients with MS. A systematic review of the literature, involving a range of databases, was performed. Full details are described in the main report. Only one study was identified that tried to evaluate the benefit of MS specialist nurses. The study concluded that MS patients and their carers found the MS specialist nurse to be helpful, particularly in improving their knowledge of MS, ability to cope, mood and confidence about the future. GPs also reported finding the nurse to be helpful with their MS patients, and 40% of the GPs stated they would purchase the services of an MS specialist nurse if their practices became fundholding. However, there were considerable methodological weaknesses inherent in the study design, and it was unclear whether the results of the study could be extrapolated to other settings or to other MS patient groups. RESULTS - ONGOING RESEARCH: There are two ongoing research studies regarding MS specialist nurses. One of these studies involves the provision of MS nurses to several areas, but also has two control populations to allow evaluation of the health benefits of the nurses to MS patients and their carers. This study will help to fill the evidence gap. RESULTS - COSTS: The costs of providing MS specialist nurses consist of their yearly salary (usually NHS grade G), as well as additional costs for travelling, administration, computer and telephone use, a pension scheme, National Insurance and study leave. The MS Society of Great Britain and Northern Ireland allows a generous total yearly cost to the employer of 40,000 pounds. The present evidence does not make it possible to comment with any certainty on the value of specialist nurses in MS. The best evidence available to the authors is specialist opinion from neurologists and nurses, and comments from patients with MS; this opinion supports the provision of MS specialist nurses. CONCLUSIONS - RECOMMENDATIONS FOR RESEARCH: Further research is needed before it will be feasible to make firm recommendations on the value of MS specialist nurses relative to other possible uses of funds.

BackgroundThe prevalence of multiple sclerosis (MS) is thought to be increasing among UK minority ethnic groups but little is known about their illness perceptions of its causation. These may influence...

Dynamic balance during walking in people with multiple sclerosis: A cross-sectional study.

Multiple sclerosis is a neurodegenerative disease that causes balance deficits, even in early stages. Evidence suggests that people with multiple sclerosis (PwMS) rely more on vision to maintain balance, and challenging balance with optical flow perturbations may be a practical screening for balance deficits. Whether these perturbations affect standing balance in PwMS is unknown. Therefore, the purpose of this study was to examine how optical flow perturbations affect standing balance in PwMS. We hypothesized that perturbations would cause higher variability in PwMS compared with matched controls during standing and that standing balance would be more susceptible to anterior-posterior (A-P) perturbations than medial-lateral (M-L) perturbations. Thirteen PwMS and 13 controls stood under 3 conditions: unperturbed, M-L perturbation, and A-P perturbations. A-P perturbations caused significantly higher A-P trunk sway variability in PwMS than controls, although both groups had similar center-of-pressure variability. Both perturbations increased variability in A-P trunk sway and center of pressure. Trunk variability data supported the hypothesis that PwMS were more susceptible to optical flow perturbations than controls. However, the hypothesis that A-P perturbations would affect balance more than M-L perturbations was partially supported. These results suggest potential for optical flow perturbations to identify balance deficits in PwMS.

Fatigue is the most prevalent symptom among people with multiple sclerosis (PwMS). Although exercise effectively reduces fatigue, the relationship between daily physical activity and fatigue has only recently been demonstrated. The aim of this study was to evaluate the prevalence of fatigue and to understand the relationship with several variables in French PwMS. Data were collected from 191 PwMS using Modified Fatigue Impact Scale (MFIS) and Fatigue Severity Scale (FSS) for fatigue, and the Godin Leisure-Time Exercise Questionnaire (GLTEQ) for physical activity. 110 PwMS (57%), 35 PwMS (18%) and 46 PwMS (24%) were considered as fatigued, non-fatigued and in the grey zone, respectively. Greater physical activity was observed in non-fatigued PwMS (20.2±19.8) compared to fatigued PwMS (12.5±14.1). FSS and MFIS scores were associated with physical activity (r = -0.28 and r = -0.25, respectively, p < 0.05). Using multivariate analysis, disability, physical activity and being unemployed explained 21% of the variance of the MFIS. The present study confirms that physical activity and fatigue are associated. Disability and unemployment status should also to be consider when assessing fatigue. Activity-oriented health policies should be redesigned to improve fatigue among PwMS.

PurposeMultiple sclerosis (MS) prognosis is often uncertain. This literature review considers patients’ understanding of, and perspectives on, MS progression to better comprehend the unmet needs of people with MS (PwMS), in order to improve treatment adherence and quality of life (QoL).MethodsLiterature searches for peer-reviewed papers concerning patient perspectives on the progression of MS and comparable conditions, published between January 2000 and January 2020, were conducted.ResultsLittle qualitative evidence exists that examines PwMS’ perspectives on MS progression. The understanding and meaning ascribed to terms such as “disease progression” vary. Some PwMS find disease labels stigmatizing, confusing, and disconnected from reality. The lack of a clear definition of progression and discrepancies between PwMS and healthcare professional (HCP) perspectives may contribute to misunderstanding and poor communication. Patient descriptions of progression and relapses include symptoms in addition to those evaluated by standard severity and disability measures. Compared with HCPs, PwMS are still focused on relapse prevention but place higher priority on QoL and ascribe different relative importance to the causes of poor adherence to treatment plans. PwMS want to discuss progression and likely prognosis. Such communication needs to be personalized and delivered with sensitivity, at an appropriate time. Poor treatment adherence may arise from a lack of understanding and poor communication, particularly around treatment goals. The few studies that directly considered patient perspectives on the progression of comparable conditions supported and extended the perspectives of PwMS. Lack of adequate communication by HCPs was the most common theme.ConclusionPatient perspectives on disease progression in MS and other chronic progressive conditions are under-investigated and under-reported. The limited evidence available highlights the importance of providing adequate information and effective HCP communication. While further studies are needed, the current evidence base offers information and insights that may help HCPs to enhance patient care, well-being, and treatment adherence.

BackgroundVaccination campaign to contrast the spread of severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) has raised the issue of vaccine immunogenicity in special populations such as people with multiple sclerosis (PwMS) on highly effective disease modifying treatments (DMTs). While humoral responses to SARS-CoV-2 mRNA vaccines have been well characterized in the general population and in PwMS, very little is known about cell-mediated responses in conferring protection from SARS-CoV-2 infection and severe coronavirus disease-2019 (COVID-19).MethodsPwMS on ocrelizumab, fingolimod or natalizumab, vaccinated with two doses of mRNABNT162b2 (Comirnaty®) vaccine were enrolled. Anti-Spike (S) and anti-Nucleoprotein (N) antibody titers, IFN-gamma production upon S and N peptide libraries stimulation, peripheral blood lymphocyte absolute counts were assessed after at least 1 month and within 4 months from vaccine second dose administration. A group of age and sex matched healthy donors (HD) were included as reference group. Statistical analysis was performed using GraphPad Prism 8.2.1.ResultsThirty PwMS and 9 HDs were enrolled. All the patients were negative for anti-N antibody detection, nor reported previous symptoms of COVID-19. Peripheral blood lymphocyte counts were assessed in PwMS showing: (i) reduction of circulating B-lymphocytes in PwMS on ocrelizumab; (ii) reduction of peripheral blood B- and T-lymphocyte absolute counts in PwMS on fingolimod and (iii) normal B- and T-lymphocyte absolute counts with an increase in circulating CD16+CD56+ NK-cells in PwMS on natalizumab. Three patterns of immunological responses were identified in PwMS. In patients on ocrelizumab, anti-S antibody were lacking or reduced, while T-cell responses were normal. In patients on fingolimod both anti-S titers and T-cell mediated responses were impaired. In patients on natalizumab both anti-S titers and T-cell responses were present and comparable to those observed in HD.ConclusionsThe evaluation of T-cell responses, anti-S titers and peripheral blood lymphocyte absolute count in PwMS on DMTs can help to better characterize the immunological response after SARS-CoV-2 vaccination. The evaluation of T-cell responses in longitudinal cohorts of PwMS will help to clarify their protective role in preventing SARS-CoV-2 infection and severe COVID-19. The correlation between DMT treatment and immunological responses to SARS-CoV-2 vaccines could help to better evaluate vaccination strategies in PwMS.

Clinical impact of Ocrelizumab extended interval dosing during the COVID-19 pandemic and associations with CD19+B-cell repopulation

This thesis is comprised of three papers that aim to examine the literature surrounding physiotherapy interventions in non-ambulatory people with Multiple Sclerosis (PwMS), to gather information from a pilot scheme of the Exercise Buddy system in community physiotherapy and to evaluate the system formally. Multiple Sclerosis (MS) is an inflammatory neurological disease that has a considerable physical and psychological impact on those affected. Approximately one quarter of PwMS are non-ambulatory, but the amount of physiotherapy received by this population is limited. An Exercise Buddy system is where professional carers are employed to conduct home exercise programmes with PwMS under the guidance of physiotherapists, and may augment the amount of physiotherapy currently received by a non-ambulatory subgroup. A systematic review on physical rehabilitation interventions in non-ambulatory PwMS was carried out that found very little high quality studies for this population. A series of semi-structured interviews were then carried out with the participants of a pilot scheme of the Exercise Buddy system. The system was found to have excellent potential to benefit PwMS and their carers both physically and psychologically, and that adequate communication and training of Exercise Buddies were crucial to the success of the system. A randomised crossover trial of 29 non-ambulatory PwMS and their carers was carried out which found significant improvements in the physical and psychological self-perceived impact of MS in PwMS. Disability levels in PwMS were maintained and large dropout rates in carers made it difficult to make definite conclusions about the effect of either intervention. The thesis concludes with a summary of the findings and a discussion of the implications of these papers for current practice and future research.

Background: The relationship between adult ADHD symptoms in People with Multiple Sclerosis (PwMS) is understudied. This study aimed to answer two questions: are PwMS more likely to experience higher ADHD symptoms versus healthy subjects? And what are the correlates of severe ADHD symptoms in PwMS? Methods: This study followed a cross-sectional design with predefined inclusion criteria. The Adult ADHD Self-Report Scale-V1.1 (ASRS) was used to assess the ADHD symptoms severity. Results: Data were analyzed from 171 PwMS and 200 controls. Regression analysis revealed that PwMS were at a significantly (B = 3.05, t = 2.24, 95% CI = 0.37-5.73, p = 0.02) higher risk to report higher ADHD scores versus controls. In addition, PwMS with relapses in the last 6 months and PwMS reporting smartphone addiction were at a significantly higher risk for severe ADHD (B = 7.19, t = 269, 95% CI = 1.91-12.48, p = 0.008) and (B = 9.18, t = 3.47, 95% CI = 3.97-14.41, p = 0.001), respectively. In conclusion, diagnosis with MS in our study was identified as a risk for higher ADHD symptoms. Conclusions: Further research is required to establish this relationship, and holistic medical and psychological interventions are required to improve the cognitive status of PwMS.

Neurorehabilitation that involves learning new motor skills is one of the promising clinical methods for motor recovery in people with multiple sclerosis (PwMS); therefore, factors that influence the acquisition of motor skills in PwMS need to be investigated. Sleep disturbances are common in PwMS; however, no study has investigated the effect of sleep and sleep-related biomarkers on skill acquisition in PwMS. This study aimed to examine the effect of sleep and sleep-related biomarkers on motor acquisition in PwMS. Forty participants with MS and 40 controls were recruited in this study. To assess motor acquisition, each participant was asked to perform a novel game through a virtual reality (VR) system 5 times (blocks). The main outcome measures for each block were the required time to complete the VR game and the recorded errors. The difference in scores between Block 5 and Block 1 for both outcomes were considered to represent motor skill acquisition. Sleep was assessed by self-report using the Pittsburgh Sleep Quality Index (PSQI) and objectively using sleep monitor technology. Serotonin level was assessed using means of enzyme-linked immunosorbent assay using plasma samples. There were significant positive correlations in both groups between motor skill acquisition and PSQI score. In PwMS, significant negative correlation between motor skill acquisition and sleep efficiency and significant positive correlation between motor skill acquisition and sleep latency were also observed. Interestingly, a significant negative correlation was observed between motor skill acquisition and the plasma serotonin level in both groups. Most of these correlations remained significant after controlling for disease severity, fatigue, baseline performance, and cognitive status. Sleep quality may influence motor skill acquisition in PwMS. Circulatory serotonin level might explain this relationship. Physical therapists are encouraged to be aware of sleep quality and sleep assessment. Sleep management strategies should be considered when treating PwMS.

ObjectiveCompassion is widely regarded as an important component of high-quality healthcare. However, its conceptualization, use, and associated outcomes in the care of people with multiple sclerosis (PwMS) have not been synthesized. The aim of this review is to scope the peer reviewed academic literature on the conceptualization, use, and outcomes associated with compassion in the care of PwMS.MethodsStudies were eligible for inclusion if reporting primary research data from quantitative, qualitative, or mixed-methods studies on the conceptualization, use, and outcomes associated with compassion in the care of PwMS. Relevant studies were identified through searching five electronic databases (CINAHL, Cochrane Library, EMBASE, MEDLINE, and PsycINFO) in January 2022. We followed the guidance outlined in the Joanna Briggs Institute (JBI) manual for evidence synthesis, and also referred to the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews Checklist (PRISMA-ScR). Simple descriptive methods were used to chart quantitative findings, and a descriptive approach with basic content analysis was employed to describe qualitative findings.ResultsFifteen studies were included (participant n = 1722): eight quantitative, six mixed-methods, one exclusively qualitative. Synthesized qualitative data revealed that PwMS conceptualize compassion as involving self-kindness, agency, and acceptance. PwMS report using self-compassion in response to unpleasant sensations and experiences. Quantitative findings suggest that compassion may mediate benefit finding, reduced distress, and improved quality of life (QoL) in PwMS, that those with the condition may become more compassionate through time, and that self-compassion specifically can be increased through training in mindfulness. In this context, greater self-compassion in PwMS correlates with less depression and fatigue, better resilience and QoL. Among studies, self-compassion was the most common outcome measure for PwMS.ConclusionsA nascent literature exists on the conceptualization, use, and outcomes associated with compassion in the care of PwMS. Further research is required to better understand what compassion means to PwMS and those caring for them. However, self-compassion can be cultivated among PwMS and may be helpful for managing unpleasant somatic symptoms and in benefit finding. Impact on other health outcomes is less clear. The use of compassion by health care providers in the care of PwMS is unstudied.