The patient's journey: multiple sclerosis.
Ontology highlight
ABSTRACT:
SUBMITTER: Langgartner M
PROVIDER: S-EPMC556161 | biostudies-literature | 2005 Apr
REPOSITORIES: biostudies-literature
Publications
The patient's journey: multiple sclerosis.
Langgartner Michaela M Langgartner Ingrid I Drlicek Marcus M
BMJ (Clinical research ed.) 20050401 7496
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Project description:The information provided by a person with multiple sclerosis (MS) may anticipate changes in the course of the disease. To explore the role of a set of standardized patient-reported outcomes (PRO) in predicting disability progression in MS an observational study was conducted in two cohorts of 30 and 86 persons with progressive MS (pwPMS) and relapsing MS (pwRMS), respectively. The associations between baseline clinical, biochemical variables and results on MS quality of life scale (MusiQol), Modified Fatigue Impact Scale (MFIS) and Beck Depression Inventory II (BDI-II) were analyzed. The progression of disability after 2 years of follow-up in pwRMS was investigated. We show that PRO differentiated pwRMS and pwPMS cohorts with lower MusiQoL and higher MFIS and BDI-II scores in the latter. Only MFIS was correlated with disability in pwRMS and high scores in the physical MFIS domain associated with worse performance in 9HPT, and a trend in T25FW and SDMT. Instead, the cognitive MFIS domain was correlated with CHI3L1 in cerebrospinal fluid, a biomarker of progression. At the end of the study, global MFIS and BDI-II were found to be independent risk factors for disability independent of relapse. Although all PRO measures explored were altered in pwPMS, baseline MFIS discriminated current and prospective disability in pwRMS, identifying patients at risk of progression.
| S-EPMC9617913 | biostudies-literature
Project description:Restrictions in the access to healthcare facilities during COVID-19 pandemic have raised the need for remote monitoring of chronic medical conditions, including multiple sclerosis (MS). In order to enable the continuity of care in these circumstances, many telemedicine applications are currently tested. While physicians' preferences are commonly investigated, data regarding the patients' point of view are still lacking. We built a 37 items web-based survey exploring patients' propensity, awareness, and opinions on telemedicine with the aim to evaluate the sustainability of this approach in MS. Analysing 613 questionnaires out of 1093 that were sent to persons with MS followed at the Multiple Sclerosis Center of Tor Vergata University, Rome, we found that more than half of respondents (54%) were open to having a televisit. Propensity toward telemedicine significantly depended on having a higher income (p = 0.037), living farther from the center (p = 0.038), using computer and tablet (p = 0.010) and using the Internet for other remote activities (p < 0.001), conversely it was not influenced by any specific disease characteristics (i.e. degree of disability). The main advantages and disadvantages of televisit reported by participants were respectively saving time (70%) and impossibility to measure physical parameters (71%). Although the majority of respondents are in favour of televisit, so far this approach is restricted to those displaying better socioeconomic conditions and higher familiarity with technology. Implications of the study are that telemedicine platforms should be better tailored to patients' demands in order to spread the use of telemedicine, to enhance usability and to increase patients' adherence.
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Project description:Elevated genetic risk for multiple sclerosis originated in Steppe Pastoralist populations
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Project description:This paper reports on the reflection of the lead researcher, a 48-year-old patient with cystic fibrosis (CF), and aims to portray his real-life experience of a 10-month action design research (ADR) project. Playing a dual role, as both a patient and researcher, the lead researcher reflects deeply on his ADR experience with particular emphasis on the problem formulation stage of creating a simple yet impactful checklist to aid memory recall of CF patients or caregivers during a medical appointment. Using Driscoll's model of reflection, a real-life unsanitized ADR experience is carefully imparted via a series of 4 vignettes, including 4 key learnings, which highlight the connection between a meticulous considered approach to problem formulation and truly effective outcomes. By providing this rich account of problem formulation within ADR, it is hoped that this reflection will help researchers to better understand the complexity of problem formulation in design-oriented research; to avoid making assumptions and becoming fixated on solutions; and to move instead to an end point where several possible ways of examining a problem have been considered, explored, and understood-an end point where successful end results are reached through grit and determination. This paper advocates for the inclusion and portrayal of the actual realities or ups and downs of this dynamic and evolving stage of ADR, capturing the often-tacit knowledge of problem formulation and begetting a sense of realism and humanity to ADR serving as knowledge contributions in their own right. The lead researcher is the patient and researcher in this ADR project. This is my story!
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Project description:Progressive multiple sclerosis
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Project description:Functional changes in the gut microbiome of Multiple Sclerosis patients come along with a striking Vancomycin-resistant gene profile
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Project description:ObjectivesTo examine the treatment decision-making process of patients with dcSSc in the context of haematopoietic stem cell transplantation (HSCT).MethodsA qualitative semi-structured interview study was done in patients before or after HSCT, or patients who chose another treatment than HSCT. Thematic analysis was used. Shared decision-making (SDM) was assessed with the 9-item Shared Decision Making Questionnaire (SDM-Q-9).ResultsTwenty-five patients [16 male/nine female, median age 47 (range 27-68) years] were interviewed: five pre-HSCT, 16 post-HSCT and four following other treatment. Whereas the SDM-Q-9 showed the decision-making process was perceived as shared [median score 81/100 (range 49-100)], we learned from the interviews that the decision was predominantly made by the rheumatologist, and patients were often steered towards a treatment option. Strong guidance of the rheumatologist was appreciated because of a lack of accessible, reliable and SSc-specific information, due to the approach of the decision-making process of the rheumatologist, the large consequence of the decision and the trust in their doctor. Expectations of outcomes and risks also differed between patients. Furthermore, more than half of patients felt they had no choice but to go for HSCT, due to rapid deterioration of health and the perception of HSCT as 'the holy grail'.ConclusionThis is the first study that provides insight into the decision-making process in dcSSc. This process is negatively impacted by a lack of disease-specific education about treatment options. Additionally, we recommend exploring patients' preferences and understanding of the illness to optimally guide decision-making and to provide tailor-made information.
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Project description:To address the differential response of the CNS, proteomics was applied in experimental autoimmune encephalomyelitis (EAE) mice and cuprizone (CPZ) mice in two different CNS regions
2023-09-27 | PXD037019 | JPOST Repository