scholarly journals Perspectives of Patients with Multiple Sclerosis on Drug Treatment

2018 ◽  
Vol 20 (6) ◽  
pp. 269-277 ◽  
Author(s):  
Larry D. Lynd ◽  
Natalie J. Henrich ◽  
Celestin Hategeka ◽  
Carlo A. Marra ◽  
Nicole Mittmann ◽  
...  

Abstract Background: Patients experience multiple sclerosis (MS) differently based on their disease type and other factors. This study aimed to explore the relative importance that patients with MS place on various attributes of MS drug therapies and to elucidate these patients' preferences regarding treatment characteristics such as administration, potential benefits, and side effects of the therapies. Methods: Focus groups were conducted in Vancouver, Canada, with 23 adult patients with MS. Participants were interviewed in three groups based on disease category and MS treatment experience: treatment-naive, non–treatment-naive relapsing-remitting and non–treatment-naive progressive MS. Results: Overall, the most important characteristics of MS drugs were effectiveness and side effects. As such, there is hesitancy about trying new-to-market drugs because the risks, benefits, and costs may not be well known. Participants valued stability in their treatment and generally did not want to take on the additional risk of trying a new drug if they felt that their current medication was providing benefit. Convenience and method of administration were secondary considerations that would generally be valued only if expected risks and benefits were considered equal or superior. Conclusions: This qualitative study shows that patients consider the impact and likelihood of benefits and side effects first and foremost when making drug treatment decisions and that other factors, such as convenience and method of administration, are of secondary concern.

2021 ◽  
Vol 11 (8) ◽  
pp. 721
Author(s):  
Afshin Derakhshani ◽  
Zahra Asadzadeh ◽  
Hossein Safarpour ◽  
Patrizia Leone ◽  
Mahdi Abdoli Shadbad ◽  
...  

Multiple sclerosis (MS) is a chronic demyelinating disease of the central nervous system (CNS) that is characterized by inflammation which typically results in significant impairment in most patients. Immune checkpoints act as co-stimulatory and co-inhibitory molecules and play a fundamental role in keeping the equilibrium of the immune system. Cytotoxic T-lymphocyte antigen-4 (CTLA-4) and Programmed death-ligand 1 (PD-L1), as inhibitory immune checkpoints, participate in terminating the development of numerous autoimmune diseases, including MS. We assessed the CTLA-4 and PD-L1 gene expression in the different cell types of peripheral blood mononuclear cells of MS patients using single-cell RNA-seq data. Additionally, this study outlines how CTLA-4 and PD-L1 expression was altered in the PBMC samples of relapsing-remitting multiple sclerosis (RRMS) patients compared to the healthy group. Finally, it investigates the impact of various MS-related treatments in the CTLA-4 and PD-L1 expression to restrain autoreactive T cells and stop the development of MS autoimmunity.


1996 ◽  
Vol 17 (4) ◽  
pp. 111-117
Author(s):  
Kathi J. Kemper

Case Scenario Having just changed insurance carriers, a mother brings her 13-year-old son to your office for a routine physical examination. He has no current complaints except for chronic asthma. His past medical history is significant for several hospitalizations for asthma. His only current medication is an albuterol inhaler that he uses two to three times daily. Further questioning about home remedies reveals that in an effort to cut down on his chronic use of medication, he recently started taking the herbal remedies Ma huang and Dong quai as well as vitamin and mineral supplements. He wants to know how safe and effective these therapies are and if you have any other suggestions to help him with his symptoms and avoid another hospitalization. Because of its severity and complexity, asthma and its treatment are often frustrating for patients, families, and clinicians. Out of desperation, many patients and families turn to alternative therapies, such as nutrition, herbs, and Chinese medicine. With the growing interest in and use of alternative therapies, practitioners would do well to become familiar with them, their side effects, and potential benefits. Traditional medical management also has changed; modern therapy emphasizes anti-inflammatory rather than bronchodilator medication. This review focuses on modern management of chronic asthma symptoms and highlights recent evidence about the effectiveness and side effects of alternative treatments.


Author(s):  
Manoj Sivan ◽  
Margaret Phillips ◽  
Ian Baguley ◽  
Melissa Nott

Multiple sclerosis (MS) is the commonest of the demyelinating CNS conditions and is the most frequent condition causing neurological disability in younger adults. It causes a combination of physical and cognitive disabilities, which, when combined with starting in young adult life and with an uncertain rate of progression, make it both challenging and responsive to rehabilitation. It is important to understand the criteria for diagnosis both to be able to discuss prognosis with patients and because symptoms may become apparent later which affect the diagnosis. It is more likely that rehabilitation medicine clinicians will see those with primary or secondary progressive MS than relapsing–remitting MS because the impact of disability tends to be greater and the current benefits from disease-modifying therapies less in progressive MS.


2010 ◽  
pp. 181-187
Author(s):  
S. Jos Closs

The impact of neuropathic pain on quality of life has been under-researched and poorly understood though survey and focus group research is helping to gain better insights into what patients suffer Neuropathic pain can result in significant sleep disturbance, fatigue, and low mood (that sometimes leads to suicidal ideation), and side-effects from drug treatment are common...


Author(s):  
Hussam Al Soub ◽  
A. Latif M. Al-khal ◽  
Deema Alsoub ◽  
Waleed Awouda

Background. To describe our experience with the use of Elvitegravir/Cobicistat/Emtricitabine/Tenofovir Alafenamide (EVG/COBI/FTC/TAF) in the treatment of HIV-infected patients in Qatar including both naïve and treatment experienced. We also report the reasons for switching to EVG/COBI/FTC/TAF in treatment-experienced patients, response to treatment, and tolerability. Method. Review of the medical records of the first 100 HIV-infected patients treated with EVG/COBI/FTC/TAF. Results. Among the 100 HIV-infected patients who were treated with EVG/COBI/FTC/TAF, 64 were Qatari and the rest were from other nationalities. 80 patients were males and 20 were females. 29 were treatment naïve, and 71 were treatment experienced. Among treatment-experienced patients, the most common reasons for switch to EVG/COBI/FTC/TAF were safety concerns, followed by regimen simplification and adverse drug reaction of the previous regimen (40%, 14%, and 13%, respectively). Treatment response to EVG/COBI/FTC/TAF leading to undetectable viral load in naïve patients was 69%, and in treatment-experienced patients, it was 83% with an overall response among all patients of 79%. Excluding those who left the country and whose data were not available, the response rate will be 86%. Tolerability was excellent with mild side effects and no discontinuation due to side effects. Conclusion. Experience with the use of EVG/COBI/FTC/TAF in 100 patients with HIV infection in Qatar was favourable both in treatment naïve patients and in those who were treatment experienced with an excellent tolerability.


2015 ◽  
Vol 86 (11) ◽  
pp. e4.14-e4
Author(s):  
Jacob Howells ◽  
Waqar Rashid

BackgroundMultiple sclerosis (MS) is the most common disabling illness of young adults in the UK causing significant social and economical cost. The aim of this study was to ascertain further detail of the characteristics of the MS population in an area of Sussex representing about 25% of the whole region.MethodsThe following was obtained from community databases: (a) demographics; (b) employment status; (c) DMT use; (d) walking aid use and (e) utilisation of social care.ResultsN=665. The mean (SD) age was 54 (13.2) years; Relapsing-Remitting MS 51%, Secondary Progressive MS 29% and Primary Progressive MS 15%. Of participants <65 years: 56% were unemployed, 44% worked part or full-time; 57.8% of participants required walking aids to mobilise, 23.3% were on a DMT, 35.1% required informal care and 20.2% required external social care. We found associations (at α level=0.05) between unemployment and: SPMS, walking aid use, informal care and external social care.DiscussionThis study highlights the needs of people with MS in Sussex. Of note is the impact on employment and the need for walking aids and additional care associated with MS. This knowledge will allow us to better develop services for people with MS with commissioners.


2018 ◽  
Vol 89 (10) ◽  
pp. A29.1-A29
Author(s):  
Hosty J ◽  
Kass-Iliyya L ◽  
Bell S ◽  
Barker L ◽  
Packwood S ◽  
...  

Natalizumab is one of the most effective therapies for relapsing-remitting Multiple Sclerosis. One complication is Progressive Multifocal Leucoencephalopathy (PML), a viral brain infection in patients already infected with JC virus. Monitoring of neurological symptoms, JC virus serology and regular brain imaging are required to ensure safe use of this therapy. Local audit data from 2015 indicated poor compliance with safety monitoring, with less than 25% of patients undergoing required investigations within the recommended time intervals. Subsequently a protocol was implemented to improve monitoring, with specialist nurses coordinating the requests for MRI scans and arranging JC virus serology, the frequency of which was determined according to the JC virus index. The records of all patients receiving Natalizumab at the centre were audited to assess the impact of this protocol (n=155). 99.2% of patients were appropriately tested for JC virus and 95.3% were imaged within the recommended interval. Additional work with the informatics and virology team ensured serology results became more easily accessible. The use of a standardised nurse-led operating procedure has resulted in marked improvement in the safety monitoring of Natalizumab.


1996 ◽  
Vol 1 (4) ◽  
pp. 207-212 ◽  
Author(s):  
L Rumbach ◽  
E Racadot ◽  
JP Armspach ◽  
IJ Namer ◽  
JF Bonneville ◽  
...  

An initial group of 21 patients plus a second group of 14 patients with active multiple sclerosis (MS) (18 progressive and 17 relapsing-remitting forms) were treated with a murine monoclonal anti-T CD4/BF5 antibody as part of a phase 1 open trial. Tolerance was relatively good: minor general side-effects occurred in 22 patients only upon the first mAb infusion. One year later, functional disability was stabilised in only six of the 35 patients and after 2 years in two patients only (among 21). One year after treatment, nine of the 17 relapsing-remitting patients were relapse-free. CD4 counts decreased dramatically 2 h after treatment These counts were back to baseline counts at 3 months. A transient increase was found in IL-6 and TNFα levels 2 h after treatment, which probably accounts for the observed side effects. Cell adhesion molecule levels were not modified. Serial MRI scans were performed in the second group of 14 patients. In all of these patients, lesion modifications were observed in the three scans performed prior to treatment Yet, no changes in the lesions were noted on the MRI scans performed over the following 3 months. These findings demonstrate the feasibility of this treatment insofar as it induced a marked CD4 lymphocyte depletion. However, it did not seem to stabilise the evolution of the disease – although one must be careful in drawing such conclusions in a phase 1 trial – or to curb the evolution of MRI-documented lesions.


2016 ◽  
Vol 17 (1) ◽  
pp. 77-86 ◽  
Author(s):  
Hannah L. Gullo ◽  
Anna L. Hatton ◽  
Sally Bennett ◽  
Jennifer Fleming ◽  
David H. K. Shum

People with Multiple Sclerosis (MS) undertake insufficient physical activity based on current guidelines. Recent work points to the benefits of increasing the amount of time spent in all non-sedentary physical activity. The current study sought to explore the potential benefits to community participation, as well as examine factors predictive, of engagement in ‘habitual’ and/or low-intensity physical activity. Seventy-four people with MS were compared to 67 healthy controls using the Frenchay Activities Index (FAI). Findings revealed differences in habitual activity level (p < .001), and low-intensity physical activity (p < .001), with people with MS having a lower level of engagement than healthy people. After controlling for the impact of MS on mobility, years since symptom onset, physical fatigue and reduced positive affect were the most significant predictors of engagement in ‘at least weekly’ low-intensity physical activity. Higher frequency of low-intensity physical activity was significantly associated with greater home, social and occupational participation (all p < .05), and physical health status (p < .01), but not mental health status (p = .964) in people with MS. Results suggest that improving habitual activity level and engagement in low-intensity physical activity may be of benefit for people with MS.


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