scholarly journals Qualitative factors shaping MS patients’ experiences of infusible disease-modifying drugs: a critical incident technique analysis

BMJ Open ◽  
2020 ◽  
Vol 10 (8) ◽  
pp. e037701
Author(s):  
Janni Lisander Larsen ◽  
Jakob Schäfer ◽  
Helle Hvilsted Nielsen ◽  
Peter Vestergaard Rasmussen

ObjectiveTo explore factors shaping the experiences of patients with relapsing-remitting multiple sclerosis with infusible disease-modifying drugs in a hospital setting.Design and settingsThe critical incident technique served as a framework for collecting and analysing patients’ qualitative account practices involving infusible disease-modifying drugs. Data were collected through semistructured interviews and one single-case study. Participants were recruited from all five regions in Denmark. Inductive thematic analysis was used to identify and interpret factors shaping patients’ infusion journey over time.ParticipantsTwenty-two patients with relapsing-remitting multiple sclerosis receiving infusion with disease-modifying drugs (natalizumab, alemtuzumab and ocrelizumab).ResultsFour time scenarios—preinfusion, day of infusion, long-term infusion and switch of infusion—associated with the infusion of disease-modifying drugs were analysed to reveal how different factors could both positively and negatively affect patient experience. Time taken to make the treatment decision was affected by participants’ subjective perceptions of their disease activity; this may have set off a treatment dilemma in the event of a pressing need for treatment. Planning and routine made infusion practices manageable, but external and internal surroundings, including infusion room ambience and the quality of relationships with healthcare professionals and fellow patients, affected patients’ cognitive state and well-being irrespective of the infusion regimen. Switching the infusion regimen can reactivate worries akin to the preinfusion scenario.ConclusionThis study provides novel insight into the positive and negative factors that shape patients’ experience of infusion care practices. From a patient’s perspective, an infusion practice is not a solitary event in time but includes planning and routine which become an integral part of their multiple sclerosis management. The quality of space and the ambience of the infusion room, combined with the relationship with healthcare professionals and fellow patients, can be a significant source of knowledge and support people with relapsing-remitting multiple sclerosis in their experience of agency in life.

2011 ◽  
Vol 2011 ◽  
pp. 1-11 ◽  
Author(s):  
Mona Alkhawajah ◽  
Joel Oger

For patients with Relapsing Remitting Multiple Scierosis Beta Interfaerons and Glatiramer Acetate were the first to be licensed for treatment. This review deals with one major question: when to initiate therapy? Through exploring the unique characteristics of the disease and treatement we suggest an approach that should be helpful in the process of decision-making.


Author(s):  
Ruaa Natiq Yahya ◽  
Ali A.Kasim ◽  
Gheyath A. Al Gawwam

Multiple sclerosis (MS) is a chronic, neurodegenerative disease of the central nervous system with unknown etiology mostly affecting young adults with mean age of 30 years, twice as high in women compared to men. The symptoms of MS, such as weakness, sensory loss, and ataxia, which are directly related to demyelination and axonal loss, along with other symptoms such as reactive depression or social isolation, can result in functional limitations, disability and reduced quality of life (QoL).  QoL assessments in patients with a chronic disease may contribute to improving treatment and could even be of prognostic value. The goals  of this study were  to  assess the QoL among  Iraqi patients with relapsing remitting multiple sclerosis(RRMS), using one of three different disease modifying therapies(DMTs) administered orally, subcutaneously, and by slow infusion; namely, fingolimod, IFN?-1b, and natalizumab, respectively. And to assess the role of certain predictors on  QoL. Functional Assessment of Multiple Sclerosis (FAMS) questionnaire version 4 was used to assess QoL. Sociodemographic and clinical characteristics were tested by univariate and multivariate regression analysis to assess the contribution of these predictors to QoL.  No significant differences were found in Symptoms, Thinking/fatigue subscales and FAMS total scores. In conclusions: Iraqi MS patients using IFN?-1b, fingolimod or natalizumab have a comparable low level of QoL. The expanded disability status scale (EDSS) is negatively associated with QoL of MS patients in all of the three therapies, while other predictors such as occupational status, educational status, smoking habit and MS duration have different impact in different treatments.


1999 ◽  
Vol 1 (1) ◽  
pp. 50-63 ◽  
Author(s):  
Richard A. Rudick

Abstract The emergence of partially effective disease-modifying drugs for patients with relapsing remitting multiple sclerosis (RR-MS) has raised important questions. Which patients with RR-MS should be started on disease-modifying drugs? Can some patients be observed without treatment? Treatment decisions are difficult in part because currently available drugs must be administered by injections, and the drugs are expensive. Emerging research findings support the view that most people diagnosed with RR-MS are at risk for irreversible brain tissue injury and resultant neurologic disability. Importantly, the pathologic process is active during the early stages in many RR-MS patients who appear clinically stable. These findings provide a rationale for proactively treating patients with RR-MS early in their disease course with disease-modifying drugs in order to suppress disease activity, minimize tissue injury, and prevent disability at a later stage. Evidence in support of this approach is reviewed in this report, as are practical issues related to the use of disease-modifying drugs in RR-MS patients.


2011 ◽  
Vol 18 (4) ◽  
pp. 418-424 ◽  
Author(s):  
M Calabrese ◽  
V Bernardi ◽  
M Atzori ◽  
I Mattisi ◽  
A Favaretto ◽  
...  

Objective: To measure the effects of disease-modifying drugs (DMDs) on the development of cortical lesions (CL) and cortical atrophy in patients with relapsing–remitting multiple sclerosis (RRMS). Methods: RRMS patients ( n = 165) were randomized to subcutaneous (sc) interferon (IFN) beta-1a (44 mcg three times weekly), intramuscular (im) IFN beta-1a (30 mcg weekly) or glatiramer acetate (GA; 20 mg daily). The reference population comprised 50 untreated patients. Clinical and MRI examinations were performed at baseline, 12 months and 24 months. Results: One hundred and forty-one treated patients completed the study. After 12 months, 37/50 (74%) of untreated patients developed ≥1 new CL (mean 1.6), compared with 30/47 (64%) of im IFN beta-1a-treated patients (mean 1.2, p = 0.021), 24/48 (50%) of GA-treated patients (mean 0.8, p = 0.001) and 12/46 (26%) of sc IFN beta-1a-treated patients (mean 0.4, p < 0.001). After 24 months, ≥1 new CL was observed in 41/50 (82%) of untreated (mean 3.0), 34/47 (72%) of im IFN beta-1a-treated (mean 1.6, p < 0.001), 30/48 (62%) of GA-treated (mean 1.3, p < 0.001) and 24/46 (52%) of sc IFN beta-1a-treated patients (mean 0.8, p < 0.001). Mean grey matter fraction decrease in DMD-treated patients at 24 months ranged from 0.7 to 0.8 versus 1.0 in untreated patients ( p = 0.023). Conclusions: Disease-modifying drugs significantly decreased new CL development and cortical atrophy progression compared with untreated patients, with faster and more pronounced effects seen with sc IFN beta-1a than with im IFN beta-1a or GA.


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