NDLI: Patient‐identified impact of symptoms in spinal and bulbar muscular atrophy

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Patient‐identified impact of symptoms in spinal and bulbar muscular atrophy

Content Provider	Scilit
Author	Guber, Robert D. Kokkinis, Angela D. Schindler, Alice B. Bendixen, Roxanna M. Heatwole, Chad R. Fischbeck, Kenneth H. Grunseich, Christopher
Copyright Year	2017
Description	Journal: Muscle & Nerve Introduction: The effects of spinal bulbar muscular atrophy (SBMA) on quality of life (QoL) are not well understood. This study describes symptoms from the patient's perspective and the impact these symptoms have on QoL. Methods: We conducted open-ended interviews with 21 adult men with genetically confirmed SBMA. Using a qualitative framework technique, we coded and analyzed interviews to identify symptoms and resulting themes. Results: From these interviews, 729 quotations were extracted. We identified 200 SBMA-specific symptoms and 20 symptomatic themes. Weakness was mentioned by all interviewees. Symptoms within the domain of mental health and the specific themes of emotional issues and psychological impact were also frequently mentioned. Discussion: Numerous symptoms affect QoL for patients with SBMA. We identified previously unrecognized symptoms that are important to address in enhancing clinical care for patients with SBMA and in developing tools to evaluate efficacy in future clinical trials. Muscle Nerve 57: 40–44, 2018
Related Links	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5763365/pdf
Ending Page	44
Page Count	5
Starting Page	40
e-ISSN	10974598
DOI	10.1002/mus.25957
Journal	Muscle & Nerve
Issue Number	1
Volume Number	57
Language	English
Publisher	Wiley-Blackwell
Publisher Date	2018-01-01
Access Restriction	Open
Subject Keyword	Journal: Muscle & Nerve Kennedy's Disease Spinal and Bulbar Muscular Atrophy Androgen Receptor Inherited Neuromuscular Disease Motor Neuron Disease Open-ended Questions Quality of Life
Content Type	Text
Resource Type	Article

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