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

Autor: Kenneth H. Fischbeck, Alice B. Schindler, Chad Heatwole, Angela Kokkinis, Robert D. Guber, Christopher Grunseich, Roxanna M. Bendixen
Rok vydání: 2017
Předmět:
Adult
Male
0301 basic medicine
Weakness
medicine.medical_specialty
Physiology
Emotions
open‐ended questions
Affect (psychology)
Kennedy disease
03 medical and health sciences
Cellular and Molecular Neuroscience
0302 clinical medicine
Atrophy
Quality of life
Clinical Research
inherited neuromuscular disease
androgen receptor
Physiology (medical)
Interview
Psychological
Humans
Medicine
Aged
Muscle Weakness
spinal and bulbar muscular atrophy
business.industry
Muscle weakness
Middle Aged
medicine.disease
Mental health
Muscular Disorders
Atrophic
3. Good health
Clinical trial
Spinal and bulbar muscular atrophy
Mental Health
030104 developmental biology
Attitude
quality of life
motor neuron disease
Physical therapy
Female
Neurology (clinical)
medicine.symptom
business
030217 neurology & neurosurgery
Zdroj: Muscle & Nerve
ISSN: 1097-4598
0148-639X
Popis: 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 males with genetically confirmed SBMA. Using a qualitative framework technique, interviews were coded and analyzed 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 SBMA subjects. 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. This article is protected by copyright. All rights reserved.
Databáze: OpenAIRE
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