Mina Stanikić, Felix Gille, Jonas Schlomberg, Paola Daniore, Susanne Kägi, Andrew Chan, Christian P Kamm, Chiara Zecca, Pasquale Calabrese, Patrick Roth, Claudia Baum, Irene Rapold, Milo A Puhan, Viktor von Wyl
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引用次数: 0
Abstract
Background: Although healthcare practitioners (HCPs) are a valuable source of social support, research on support provided by neurologists to older persons with multiple sclerosis (pwMS) remains limited.
Objectives: To explore expectations of pwMS aged 55 years or older regarding MS care and to identify support types, met and unmet needs within their relationship with neurologists.
Methods: Utilizing a mixed-methods approach, we analyzed survey data from Swiss Multiple Sclerosis Registry participants. Quantitative data included Likert scales gauging the importance of various aspects of MS care for pwMS both in and out of neurological care. Qualitative data were derived from three open-ended questions, focusing on neurologist-provided support for pwMS in neurological care. Data underwent descriptive and deductive thematic analysis, using Cutrona and Suhr framework for coding social support.
Results: Among the 286 participants (median age 61.0 years, interquartile range (IQR) 57.0-66.0; median disease duration 23.5 years, IQR 15.0-31.0), 84.6% (N = 244) were under neurological care. Quantitative findings highlighted the significance of HCP expertise and consultation time. Qualitative analysis identified all social support domains in the neurologist-pwMS relationship, with informational support being most prevalent, followed by emotional support. Neurologists' expertise, availability, comprehensive advising, listening, and validation emerged as key themes. Unmet needs were relatively infrequent and concerned insufficient information on complementary medicine, empathy, and understanding of symptoms like fatigue.
Conclusions: Older pwMS see neurologists as adequate providers of comprehensive support and particularly value neurologists' sufficient availability, informational and emotional support. Areas for improvement include attention to complementary medicine and empathy.
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