ABSTRACT
The treatment of multiple sclerosis (MS) has become possible with the advent of disease-modifying therapies, but little is known about patients' experiences when faced with a complex array of treatment options. The purpose of this phenomenological study was to explore the lived experience of making a first decision about treatment with disease-modifying therapies for relapsing-remitting MS. Nine participants shared their perspectives on negotiating the decision to accept, refuse, or delay treatment. All individuals described a core theme in which decision making about treatment was part of a process of coming to a "redefined self." This core theme included reflections about self-image, quality of life, goals, and being a person with MS. Six common themes supporting this core theme were (a) weighing and deciding what's important, (b) acknowledging the illness as part of oneself, (c) playing the mental game, (d) seeking credible resources, (e) evaluating symptoms and fit with quality of life, and (f) managing the roles and involvement of family. The findings of this study provide a greater understanding about the experience of making a therapeutic choice for those with MS and offer insights for nurses when supporting patients faced with options about treatment.
Subject(s)
Decision Making , Multiple Sclerosis, Relapsing-Remitting/nursing , Multiple Sclerosis, Relapsing-Remitting/psychology , Self Concept , Sick Role , Adaptation, Psychological , Adult , Disability Evaluation , Female , Goals , Humans , Male , Middle Aged , Quality of Life/psychologyABSTRACT
We describe two cases of neuromyelitis optica (NMO) with clinical and radiographically confirmed features of hypothalamic involvement, in the absence of other parenchymal brain lesions. Their course is otherwise typical of Devic's form of NMO. A review of the literature identifies additional cases of NMO in which clinical features attributable to under-recognized dysfunction of the hypothalamic-pituitary axis were present. We propose that the currently accepted criteria for the diagnosis of NMO could be revisited to recognize the possibility of lesions developing within hypothalamic structures.
Subject(s)
Hypothalamic Diseases/etiology , Multiple Sclerosis/complications , Neuromyelitis Optica/etiology , Adolescent , Adult , Female , Humans , Hypothalamic Diseases/pathology , Magnetic Resonance Imaging , Male , Multiple Sclerosis/pathology , Neuromyelitis Optica/pathologyABSTRACT
The introduction of disease-modifying therapies (DMTs) for multiple sclerosis (MS) over the last 7 years has had a significant effect on the management of those living with this disease. Initially, the focus of improving treatment outcomes was on ensuring adherence to therapy by managing drug-related adverse events. However, treatment adherence is only one facet of ensuring optimal health outcomes for patients using DMTs. Therefore, a group of 80 nurses from Canada and the United States (The North American MS Nurses' Treatment Optimization Group) developed an evidence-based nursing approach to address the various factors involved in obtaining optimal patient outcomes. The goal of this nursing approach is to ensure the best possible clinical, subclinical, psychosocial, and quality-of-life outcomes for patients with MS using DMTs.
