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Patient-identified impact of symptoms in spinal and bulbar muscular atrophy.
Guber, Robert D; Kokkinis, Angela D; Schindler, Alice B; Bendixen, Roxanna M; Heatwole, Chad R; Fischbeck, Kenneth H; Grunseich, Christopher.
Afiliación
  • Guber RD; Neurogenetics Branch, National Institute of Neurological Disorders and Stroke, National Institutes of Health, 35 Convent Drive Bethesda, Maryland, 20892, USA.
  • Kokkinis AD; Neurogenetics Branch, National Institute of Neurological Disorders and Stroke, National Institutes of Health, 35 Convent Drive Bethesda, Maryland, 20892, USA.
  • Schindler AB; Neurogenetics Branch, National Institute of Neurological Disorders and Stroke, National Institutes of Health, 35 Convent Drive Bethesda, Maryland, 20892, USA.
  • Bendixen RM; Department of Occupational Therapy, University of Pittsburgh, Pittsburgh, Pennsylvania, USA.
  • Heatwole CR; Department of Neurology, University of Rochester Medical Center, Rochester, New York, USA.
  • Fischbeck KH; Neurogenetics Branch, National Institute of Neurological Disorders and Stroke, National Institutes of Health, 35 Convent Drive Bethesda, Maryland, 20892, USA.
  • Grunseich C; Neurogenetics Branch, National Institute of Neurological Disorders and Stroke, National Institutes of Health, 35 Convent Drive Bethesda, Maryland, 20892, USA.
Muscle Nerve ; 57(1): 40-44, 2018 Jan.
Article en En | MEDLINE | ID: mdl-28877556
ABSTRACT

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.
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Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Trastornos Musculares Atróficos Tipo de estudio: Diagnostic_studies / Etiology_studies / Qualitative_research Límite: Adult / Aged / Female / Humans / Male / Middle aged Idioma: En Revista: Muscle Nerve Año: 2018 Tipo del documento: Article País de afiliación: Estados Unidos

Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Trastornos Musculares Atróficos Tipo de estudio: Diagnostic_studies / Etiology_studies / Qualitative_research Límite: Adult / Aged / Female / Humans / Male / Middle aged Idioma: En Revista: Muscle Nerve Año: 2018 Tipo del documento: Article País de afiliación: Estados Unidos