It is not uncommon that nurses are unable to meet the normative expectations of chronically ill patients. The purpose of this article is to describe and illustrate Walker’s expressive-collaborative view of morality to interpret the normative expectations of two women with multiple sclerosis. Both women present themselves as autonomous persons who make their own choices, but who also have to rely on others for many aspects of their lives, for example, to find a new balance between work and (...) social contacts or to find work. We show that their narratives of identity, relationship and value differ from the narratives that others use to understand and identify them. Since identities, relationships and values give rise to normative expectations, in both cases there is a conflict between what the women expect of their caregivers and vice-versa. The narratives also show that two similar persons with multiple sclerosis may need very different care. This implies that nurses caring for such persons should listen carefully to their stories and reflect on their own perceptions of self. (shrink)

This paper is based on the second Jack Pritchard Memorial Lecture given at the Queen's University of Belfast (1). The author describes his own personal response to having multiple sclerosis (MS), and then examines the psycho-social aspects of the disease in a wider context. The distress caused by the emotional difficulties associated with MS is emphasised, and in particular the strain placed on the doctor-patient relationship at the time of diagnosis. The physician's ability to cope with the needs (...) of MS families is explored, together with the importance of offering counselling. Also discussed is the ethical question of whether or not the patient should be told the complete truth. Patients with MS are seen as having a potential not only for helping each other, but also for being able to share in the management of their own health care. (shrink)

The Neurological Disease Ontology (ND) is being developed to provide a comprehensive framework for the representation of neurological diseases (Diehl et al., 2013). ND utilizes the model established by the Ontology for General Medical Science (OGMS) for the representation of entities in medicine and disease (Scheuermann et al., 2009). The goal of ND is to include information for each disease concerning its molecular, genetic, and environmental origins, the processes involved in its etiology and realization, as well as its clinical presentation (...) including signs and symptoms. (shrink)

Although working memory and information processing speed impairments in multiple sclerosis have been widely investigated, several questions, regarding the nature of these impairments and their relationship, remain unclear. The aim of this short communication article is to present an overview of our recent research findings regarding the characteristics of WM impairment in MS patients and, more precisely, the degree of impairment observed in each WM’s component, i.e., phonological loop, visuospatial sketchpad, central executive, and episodic buffer and the relationship (...) between IPS and each of the four WM components, in an attempt to expand the existing rather narrow understanding of the interconnection between reduced IPS and WM impairment. Two studies of our research team are presented here and their findings are briefly discussed, highlighting the importance of further research on a specific component, namely the episodic buffer component among MS patients. (shrink)

Background:Dignity is a fundamental concept in healthcare. The symptoms of multiple sclerosis have a negative effect on dignity. Understanding of lived experience of dignity in people with multiple...

Dignity is one of the essential values and central concepts in nursing care. Dignity can be threatened due to radical life changes; therefore, this idiographic case study aimed to explore the sense of dignity experienced by a woman with multiple sclerosis. An interpretative phenomenological analysis was adopted, using data collected through a face‐to‐face semistructured interview with Emily, a 45‐year‐old woman. The study was approved by the local ethics committee. Six personal experiential themes were identified: To be ruled by (...) a sick body; Silent progression; Loss of independence as a burden for the family; Will to fight for the meaning of life; Maintaining dignity‐in‐relation; Dignified care in a period of greater vulnerability. Emily's dignity is based on the effort to fight for a meaningful life, utilization of her full potential, maintain independence in activities of daily living and support in relationships. Continuous changes in functional ability, loss of self‐control and an uncertain future have a negative impact on the experience of her dignity. In the context of dignified health care, she considers individual care and maintaining autonomy important. The idiographic case study can contribute to a better understanding of the experience of a woman suffering from multiple sclerosis. It is possible to carry out interventions that aim to support her dignity, improve her quality of life and contribute to individually oriented health care. (shrink)

Melatonin is a hormone with complex roles in the pathogenesis of autoimmune disorders. Over the years, it has become clear that melatonin may exacerbate some autoimmune conditions, whereas it alleviates others such as multiple sclerosis. Multiple sclerosis is an autoimmune disorder characterized by a dysregulated immune response directed against the central nervous system. Indeed, the balance between pathogenic CD4+ T cells secreting IFN‐γ (TH1) or IL‐17 (TH17); and FoxP3+ regulatory T cells and IL‐10+ type 1 regulatory (...) T cells (Tr1 cells) is thought to play an important role in disease activity. Recent evidence suggests that melatonin ameliorates multiple sclerosis by controlling the balance between effector and regulatory cells, suggesting that melatonin‐triggered signaling pathways are potential targets for therapeutic intervention. Here, we review the available data on the effects of melatonin on immune processes relevant for MS and discuss its therapeutic potential. (shrink)

Multiple sclerosis significantly affects how patients maintain the resources they consider important. The aim of this paper is to describe the moderation effect of time since diagnosis on the evaluation of resources by patients with multiple sclerosis, on the basis of S.E. Hobfoll’s Conservation of Resources theory. The study was conducted using paper and pencil methods and involved 77 patients, of whom 32 received their diagnosis less than four years ago, and 45 more than four years (...) ago. The patients’ resource evaluation was investigated using the Polish adaptation of the COR questionnaire. Patients who received their diagnosis more than four years ago were more likely to consider vital and spiritual resources to be more important. In patients diagnosed less than four years ago, the loss of economic, political, and vital resources was significant. It is shown moderation effect of time since diagnosis. The results may for the basis for further research. (shrink)

This paper describes the lifeworld of one individual, Ann, in an attempt to elucidate the existential impact of early stage multiple sclerosis. Drawing on Ann's own reflections captured in a relatively unstructured interview, I construct a narrative around her first year of living with the diagnosis. Then, existential-phenomenological analysis reveals how Ann's life - lived in and through a particular body and lifeworld context - is disrupted. The unity between her body and self can no longer be taken (...) for granted. The existential possibilities inherent in her lived body are diminished and have to be renegotiated. Her sense of identity, project, relations with others and present/future plans are threatened. Ann's illness is encountered in the context of her life activities and relationships. This is the intertwining of body, self and world. To live with multiple sclerosis is to experience a global sense of disorder - a disorder which incorporates a changed relation with one's body, a transformation in the surrounding world, a threat to the self, and a change in one's relation to others. (shrink)

Much is known about the phenomenon of dignity, yet there is still a need for implementing this understanding in clinical practice. The main purpose of this study was to find out how persons suffering from multiple sclerosis experience and understand dignity and violation in the context of a rehabilitation ward. A phenomenological-hermeneutic approach was used to extract the meaningful content of narratives from 14 patients with multiple sclerosis. Data were collected by personal research interviews. The findings (...) revealed three main themes: (1) ‘invisibly captured in fatigue’; (2) ‘fighters’ law: one who does not ask will not receive’; and (3) ‘dignity is humanity’. The essence of the findings in this study is that dignity is humanity. According to the participants, dignity requires time and is experienced only in a context of empathy and mutual confidence. (shrink)

Multiple Sclerosis is a debilitating chronic autoimmune disease of the central nervous system that results in lower quality of life. Medication adherence is important for reducing relapse, disease progression, and MS-related symptoms, particularly during the early stages of MS. However, adherence may be impacted by negative emotional states. Therefore, it is important to identify protective factors. Past research suggests that the ability to discriminate between negative emotional states, also known as negative emotion differentiation, may be protective against enactment (...) of maladaptive risk-related behaviors. However, less is known as to how NED may promote adaptive health behaviors such as medication adherence. Utilizing weekly diaries, we investigated whether NED moderates the association between negative affect and medication adherence rates across 58 weeks among patients newly diagnosed with MS. Results revealed that NED significantly moderated the relationship between negative affect and medication adherence. Specifically, greater negative affect was associated with lower adherence only for individuals reporting low NED. However, this link disappeared for those reporting moderate to high NED. Building upon past research, our findings suggest that NED may promote adaptive health behaviors and have important clinical implications for the treatment and management of chronic illness. (shrink)

BackgroundMultiple sclerosis, the most common neurological disease that causes disability in youth, does not only affect physical functions but is also associated with cognitive impairment, fatigue, depression, and anxiety and can significantly impact health-related quality of life. Since MS is generally diagnosed at a young age—a period of great significance for personal, relational, and professional development—adaptation can become highly challenging. Therefore, enhancing the competence of young people to adaptively cope with these potential challenges is of utmost importance in order (...) to promote their potentialities and talents. It has been shown that psychological interventions targeting MS patients can enhance resilience and HRQoL and that regular physical activity and social engagement can improve psychological well-being. However, literature on the development of global interventions based on the bio-psycho-social model of the disease is missing. Even less attention has been paid to interventions dedicated to young adults with MS and to the involvement of patients in the development of such programs.AimsIn collaboration with MS patients, this study aims to develop a bio-psycho-social intervention for YawMS, aiming to improve their HRQoL and to explore its feasibility, acceptability, and effects.MethodsTo tailor the intervention to the specific needs of YawMS, “patient engagement principles” will be adopted in the co-creation phase, performing a web survey and focus groups with patients and healthcare professionals. In the intervention phase, a pilot sample of 60 young adults with MS will be enrolled. The co-created intervention, composed of group sessions over a 12-week period, will cover psycho-social strategies and include physical activities. Adopting a longitudinal, pre–post evaluation design, self-report questionnaires measuring HRQoL and other bio-psycho-social features will be administered, the quantity and quality of PA will be measured, and a questionnaire developed by the authors will be used to evaluate the feasibility and acceptability of the ESPRIMO intervention. (shrink)

Common symptoms of multiple sclerosis include motor impairments of the lower extremities, particularly gait disturbances. Loss of balance and muscle weakness, representing some peripheral effects, have been shown to influence these symptoms, however, the individual role of cortical and subcortical structures in the central nervous system is still to be understood. Assessing [18F]fluorodeoxyglucose uptake in the CNS can assess brain activity and is directly associated with regional neuronal activity. One potential modality to increase cortical excitability and improve motor (...) function in patients with MS is transcranial direct current stimulation. However, tDCS group outcomes may not mirror individual subject responses, which impedes our knowledge of the pathophysiology and management of diseases like MS. Three PwMS randomly received both 3 mA tDCS and SHAM targeting the motor cortex that controls the more-affected leg for 20 min on separate days before walking on a treadmill. The radiotracer, FDG, was injected at minute two of the 20 min walk and the subjects underwent a Positron emission tomography scan immediately after the task. Differences in relative regional metabolism of areas under the tDCS anode and the basal ganglia were calculated and investigated. The results indicated diverse and individualized responses in regions under the anode and consistent increases in some basal ganglia areas. Thus, anodal tDCS targeting the M1 that controls the more-affected leg of PwMS might be capable of affecting remote subcortical regions and modulating the activity of the circuitry connected to these regions. (shrink)

Tackling impaired bioenergetics in multiple sclerosis has been recently recognized as an innovative approach with therapeutic potential. Guanidinoacetic acid is an experimental nutrient that plays a significant role in high-energy phosphate metabolism. The preliminary trials suggest beneficial effects of supplemental GAA in MS, with GAA augments biomarkers of brain energy metabolism and improves patient-reported features of the disease. GAA can also impact other metabolic footprints of MS, including demyelination, oxidative stress, and GABA-glutamate imbalance. In this mini-review article, we (...) summarize studies evaluating GAA effectiveness in MS, explore mechanisms of GAA action, and discuss the challenges of using dietary GAA as an element of MS therapy. (shrink)

BackgroundCo-creation allows to develop tailored interventions in chronicity and to increase patients’ engagement. Considering the interacting nature of physical, psychological, and social domains in multiple sclerosis, a biopsychosocial approach to care is crucial.AimsThis paper aims to present an example of a co-creation process in the context of chronic diseases preferences and perspectives of young adults with multiple sclerosis and healthcare professionals on the relevance, objectives, and modalities of a biopsychosocial intervention and on strategies/barriers to participation.MethodsA participatory (...) mixed-method approach in three consecutive steps was implemented: online surveys with YawMS and HCPs, online focus groups with YawMS, consultation with an advisory board composed by YawMS, HCPs and researchers. For the survey, descriptive statistics and inductive content analysis have been used for quantitative and qualitative analysis, respectively. FGs and AB were used to deepen the understanding of the survey’s results.ResultsAn integrated intervention is extremely relevant according to the perspectives of the main stakeholders. Helping disease acceptance, providing stress management strategies, and supporting emotional expression emerged as the most relevant psychological objectives according to participants. Having tangible benefits, being tailored, and fostering interpersonal relationships emerged as the main preferred characteristics of physical activity. Preferences emerged on the modalities and timing of the intervention, with a venue unrelated to the disease strongly supported. Both HCPs and YawMS highlighted as the most valuable advantages of conducting the intervention online the increased accessibility, while the main limit was the restriction to social interaction. Accessibility and lack of time resulted as the main barriers to participation.ConclusionThe co-creation process gave valuable information on preferences and perspectives of main stakeholders on objectives, modalities, and strategies to improve participation which has been used in the design of the ESPRIMO biopsychosocial intervention. Those results might inform future intervention development in the field of chronicity. The current paper outlined a co-creation methodology which might be replicated in future research on other conditions of vulnerability. (shrink)

Tremor of the upper extremity is a significant cause of disability in some patients with multiple sclerosis. The MS tremor is complex because it contains an ataxic intentional tremor component due to the involvement of the cerebellum and cerebellar outflow pathways by MS plaques, which makes the MS tremor, in general, less responsive to medications or deep brain stimulation than those associated with essential tremor or Parkinson's disease. The cerebellar component has been thought to be the main reason (...) for making DBS less effective, although it is not clear whether it is due to the lack of suppression of the ataxic tremor by DBS or else. The goal of this study was to clarify the effect of DBS on cerebellar tremor compared to non-cerebellar tremor in a patient with MS. By wearing an accelerometer on the index finger of each hand, we were able to quantitatively characterize kinetic tremor by frequency and amplitude, with cerebellar ataxia component on one hand and that without cerebellar component on the other hand, at the beginning and end of the hand movement approaching a target at DBS Off and On status. We found that cerebellar tremor surprisingly had as good a response to DBS as the tremor without a cerebellar component, but the function control on cerebellar tremor was not as good due to its distal oscillation, which made the amplitude of tremor increasingly greater as it approached the target. This explains why cerebellar tremor or MS tremor with cerebellar component has a poor functional transformation even with a good percentage of tremor control. This case study provides a better understanding of the effect of DBS on cerebellar tremor and MS tremor by using a wearable device, which could help future studies improve patient selection and outcome prediction for DBS treatment of this disabling tremor. (shrink)

Objective: To determine the views of people with multiple sclerosis (MS) and professionals in relation to confidentiality, consent and access to data within a proposed MS register in the UK. Design: Qualitative study using focus groups (10) and interviews (13). Setting: England and Northern Ireland. Participants: 68 people with MS, neurologists, MS nurses, health services management professionals, researchers, representatives from pharmaceutical companies and social care professionals. Results: People with MS expressed open and altruistic views towards the use of (...) their personal information to facilitate service provision and research, placing trust in responsible guardianship and legitimate use of their information. Participant’s proposed that people with MS should be able to select their individual level of involvement in a register using levels of consent. It was agreed that access to the register should be governed by a guardianship committee composed of a range of stakeholders. People with MS did not wish their details to be used by marketing agencies and did not consider this a legitimate use of their data. Whilst participants were positive of the role a register could play in promoting research, participants felt that access to data by pharmaceutical industries should be administered by the guardianship committee. People with MS are concerned should their employers be able to access their personal information. Professionals were more cautious than people with MS in their approach to the use of patient personal data within a register. Conclusions: Whilst all stakeholders were positive of the benefits of an MS register, development of such a resource must incorporate robust data security and guardianship measures in order to ensure that, whilst opportunities are maximised, risks to the privacy of individuals and legal challenges to professionals are avoided. (shrink)

BackgroundEvidence suggests that organizational models that provide care interventions including patient support programs may increase patient adherence to multiple sclerosis therapies by providing tailored symptom management, informational support, psychological and/or social support, lifestyle changes, emotional adjustment, health education, and tailored coaching, thus improving patients' overall quality of life across the disease course.ObjectiveThe main objective of this study was to describe MS patients' self-reported experience of a nurse-led, telephone-based PSP and to explore its potential role in improving disease and (...) therapy management skills.MethodsSurvey data were analyzed from a subset of patients relapsing–remitting MS using interferon beta-1a already registered in the adveva® PSP from three Italian multiple sclerosis centers with a consolidated experience in RRMS disease, treatment management, and PSP programs.ResultsIn total, 244 patient data at baseline were analyzed, of which 115 had a follow-up of at least 6 months. Results from this study provide an early view into the role of this PSP in improving the patients reported overall experience regarding disease management and injectable therapy, thus potentially ameliorating treatment adherence and decreasing health care cost. Moreover, study findings confirm the role of providing a patient-focused support by addressing non-medication-related topics in the PSP consultations. Indeed, patients involved in the adveva® PSP program reported a better psychological status in the follow up as demonstrated by an increased optimism regarding their future, tolerance of disease uncertainty, and their perceived ability to benefit from external help and social support.ConclusionsAs such, it is reasonable to conclude that the involvement in the adveva® PSP and the PSP's assistance in guiding patients on proper treatment self-management techniques is of great value to patients as it might contribute to improving engagement in their health care journey in terms of perceived self-care skills, emotional coping toward the future and the unpredictability of the disease course and their general attitudes toward the injection itself, involving pain tolerance. (shrink)

For patients with multiple sclerosis, deficits in gait significantly reduce the quality of life. Using the concept of muscle synergies, this study investigated the modular organization of motor control during level and inclined walking in MS patients compared with healthy participants to identify the potential demand-specific adjustments in motor control in MSP. We hypothesized a widening of the time-dependent activation patterns in MSP to increase the overlap of temporally-adjacent muscle synergies, especially during inclined walking, as a strategy to (...) increase the robustness of motor control, thus compensating pathology-related deficits. We analyzed temporal gait parameters and muscle synergies from myoelectric signals of 13 ipsilateral leg muscles using non-negative matrix factorization. Compared with HP, MSP demonstrated a widening in the time-dependent coefficients, as well as altered relative muscle contribution, in certain synergies during level and inclined walking. Moreover, inclined walking revealed a demand-specific adjustment in the modular organization in MSP, resulting in an extra synergy compared with HP. This further increased the overlap of temporally-adjacent muscle synergies to provide sufficient robustness in motor control to accomplish the more demanding motor task while coping with pathology-related motor deficits during walking. (shrink)

Abstractabstract:This article examines the complexity of narratives of space and time which support the diagnosis of multiple sclerosis, and the consequences for patients disadvantaged by deficits in social cognition or socioeconomic status in areas relating to literacy. In the context of demonstrating the significance of narratives of space and time in the diagnostic process for multiple sclerosis, the article discusses new strategies for treatment that engage the arts and humanities and presents a brief history of the (...) disease and current diagnostic criteria, before discussing the MS Society of Great Britain and Ireland's awareness and fundraising campaign from the 1980s, and Tom Kempinski's play Duet for One, inspired by the life of cellist Jacqueline du Pré. The conclusion addresses the urgency of heightening patient and clinician awareness of how the presentation, interpretation, and sharing of narrative accounts of disease influence health outcomes and makes suggestions about how to adjust for these biases. (shrink)

Physical activity counteracts some of the negative consequences associated with chronic neurological diseases. Here, we describe the levels of physical activity and sports activity in patients with multiple sclerosis and chronic stroke and test compliance with the recommendation for health-promoting physical activity of the World-Health Organization. Secondly, we tested for differences between the groups of patients, and thirdly, we examined relationships between PA and Sport with psychological indicators of perceived energy and self-beliefs. Psychological constructs were assessed with validated (...) measures from different disciplines in Psychology. A statistical aim was to describe interpretations gained by parametric Bayesian and Null-Hypothesis-Significance Testing statistics on the example of the conducted tests for differences and relationships. Descriptive analyses revealed that pMS and pStroke complied with recommendations of the WHO, but with large variance indicating that patient groups are not homogenous. Tests for differences showed that the PA difference between pMS and pStroke can be attributed to the higher proportion of women in the pMS sample as they engage more in household chores. Tests for relationships showed that for pStroke, vitality, self-control, and self-efficacy were positively related to the level of sports activity. Furthermore, pStroke who were sport active had lower fatigue and higher self-control and self-efficacy scores than sport inactive people. Although they address slightly different questions, the Bayesian and the NHST approach led to similar general conclusions. (shrink)

Recent magnetic resonance imaging and pathological studies have indicated that axonal loss is a major contributor to disease progression in multiple sclerosis. 1 H magnetic resonance spectroscopy, through measurement of N -acetyl aspartate, a neuronal marker, provides a unique tool to investigate this. Patients with primary progressive multiple sclerosis have few lesions on conventional MRI, suggesting that changes in normal appearing white matter, such as axonal loss, may be particularly relevant to disease progression in this group. (...) To test this hypothesis NAWM was studied with MRS, measuring the concentration of N -acetyl derived groups. Single-voxel MRS using a water-suppressed PRESS sequence was carried out in 24 patients with primary progressive multiple sclerosis and in 16 age-matched controls. Ratios of metabolite to creatine concentration were calculated in all subjects, and absolute concentrations were measured in 18 patients and all controls. NA/Cr was significantly lower in NAWM in patients than in controls, as was the absolute concentration of NA. There was no significant difference in the absolute concentration of creatine between the groups. This study supports the hypothesis that axonal loss occurs in NAWM in primary progressive multiple sclerosis and may well be a mechanism for disease progression in this group. (shrink)

A possible explanation for policy implementation failure is that the views of the policy’s target groups are insufficiently taken into account during policy development. It has been argued that involving these groups in an interactive process of policy development could improve this. We analysed a project in which several target populations participated in workshops aimed to optimise the utilisation of an expensive novel drug (interferon beta) for patients with Multiple Sclerosis. All participants seemed to agree on the appropriateness (...) of establishing a central registry of Multiple Sclerosis patients and developing guidelines. Nevertheless, these policy measures were not implemented. Possible explanations include (1) the subject no longer had high priority when the costs appeared lower than expected, (2) the organisers had paid insufficient attention to the perceived problems of parties involved, and (3) changes within the socio-political context. The workshops in which representatives of the policy’s target populations participated did not provide enough interactivity to prevent policy implementation failure. (shrink)

In Dutch healthcare policy patients are seen as informed, autonomous experts and active decision makers with control over their illness and care. Healthcare professionals are expected to operate as providers of information. The purpose of this article is to argue that the consumerist approach of the patient–professional relationship is not a productive way to envision the patient–professional relationship. We argue that an interpretive/deliberative model is a more productive way to envision this relationship, especially in the care for people with a (...) chronic illness. This is illustrated with a case study. It concerns a study of the experiences of a Multiple Sclerosis (MS) patient and healthcare professionals involved in her care. The presented stories show that the participants did not act in line with the roles and responsibilities embodied in the consumerism rhetoric in Dutch healthcare policy. Expectations of patients and healthcare professionals are better met when care is redefined as mutual endeavour in which the caring abilities of healthcare professionals and the vulnerability of chronically ill patients are taken into account. (shrink)