Background: In multiple sclerosis (MS), the measure of the loss of autonomy appears to be particularly relevant to provide adapted and personalized responses to improve the quality of care in routine clinical practice. In this context, this research aimed to develop a new patient-reported outcome measure (PROM) evaluating MS patients' autonomy, in order to provide an easy-to-use tool in the context of the relations between healthcare professionals and patients with MS, and to be used in future clinical trials for treatment assessment.
Methods: This research was conducted in two consecutive stages.
Introduction: Injection site reactions (ISRs) and flu-like symptoms (FLS) are common in patients with relapsing forms of multiple sclerosis (MS) treated with peginterferon beta-1a. The purpose of this Delphi analysis was to explore peginterferon beta-1a discontinuation rates across MS treatment centers, to obtain consensus on effective mitigation and management strategies for ISRs and FLS, and to identify areas where additional training and education for nurses and patients could improve treatment outcomes.
Methods: In this modified Delphi process, an international steering committee of eight MS-certified nurses developed two rounds of surveys, which were completed by 262 and 188 MS nurses, respectively, representing nine countries.
The diagnosis of multiple sclerosis is major news, which is impossible for patients to receive while remaining calm and lucid. Even if the patients have anticipated the diagnosis, it still comes as a huge shock. A post-diagnosis consultation can be led by a nurse and/or a psychologist.
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