Patient-identified impact of symptoms in spinal and bulbar muscular atrophy.

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 s

SUBMITTER: Guber RD 

PROVIDER: S-EPMC5763365 | biostudies-literature | 2018 Jan

REPOSITORIES: biostudies-literature