1. A qualitative study assessing patient perspectives in the process of decision-making on disease modifying therapies (DMT's) in multiple sclerosis (MS)
- Author
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Archibald de Ceuninck van Capelle, Hanneke van der Meide, Leo. H. Visser, Frans Vosman, Tranzo, Scientific center for care and wellbeing, and Department of Culture Studies
- Subjects
Male ,Health Care Providers ,Social Sciences ,Nurses ,lcsh:Medicine ,Disease ,Biochemistry ,Cognition ,0302 clinical medicine ,Medicine and Health Sciences ,Psychology ,HISTORICAL PROSPECTIVE COHORT ,030212 general & internal medicine ,lcsh:Science ,Multidisciplinary ,Pharmaceutics ,Neurodegenerative Diseases ,Middle Aged ,Qualitative Studies ,Professions ,Neurology ,Research Design ,Disease Progression ,Female ,Research Article ,Adult ,medicine.medical_specialty ,Multiple Sclerosis ,Psychotherapist ,Clinical Research Design ,Process (engineering) ,Decision Making ,Immunology ,MEDLINE ,Research and Analysis Methods ,Autoimmune Diseases ,03 medical and health sciences ,Social support ,Multiple Sclerosis, Relapsing-Remitting ,Drug Therapy ,medicine ,Humans ,Pain Management ,Patient participation ,business.industry ,Multiple sclerosis ,lcsh:R ,Perspective (graphical) ,Cognitive Psychology ,Biology and Life Sciences ,Proteins ,SOCIAL-CONSEQUENCES ,medicine.disease ,Demyelinating Disorders ,Health Care ,People and Places ,Physical therapy ,Cognitive Science ,Clinical Immunology ,Population Groupings ,lcsh:Q ,Interferons ,Adverse Events ,Patient Participation ,Clinical Medicine ,business ,030217 neurology & neurosurgery ,Neuroscience ,Qualitative research - Abstract
BackgroundPhysicians commonly advise patients to begin disease modifying therapies (DMT's) shortly after the establishment of a diagnosis of Multiple Sclerosis (MS) to prevent further relapses and disease progression. However, little is known about the meaning for patients going through the process of the diagnosis of MS and of making decisions on DMT's in early MS.ObjectiveTo explore the patient perspective on using DMT's for MS. Methods: Ten participants with a recent (ResultsThe analysis revealed the following themes: (1) Constant confrontation with the disease, (2) Managing inevitable decline, (3) Hope of delaying the progression of the disease, and, (4) The importance of social support. The themes show that patients associate the recommendation to begin DMT's (especially injectable DMT's) with views about their bodies as well as their hopes about the future. Both considering and adhering to treatment are experienced by patients as not only matters of individual and rational deliberation, but also as activities that are lived within a web of relationships with relatives and friends.ConclusionFrom the patient perspective, the use of DMT's is not a purely rational and individual experience. More attention to the use of DMT's as relational and lived phenomena will improve the understanding of the process of decision-making for DMT's in MS.
- Published
- 2017