Quality of life and measures of quality of life in patients with neuromuscular disorders

TM Burns, CD Graham, MR Rose, Z Simmons - Muscle & nerve, 2012 - Wiley Online Library
In this review we present an overview of quality of life (QOL) and QOL measures in
neuromuscular disorders. We discuss the characteristics of QOL measures used in …

A systematic review of quality of life in adults with muscle disease

CD Graham, MR Rose, EA Grunfeld, SD Kyle… - Journal of …, 2011 - Springer
We reviewed the literature on how muscle disease affects quality of life compared to healthy
controls, and the factors that influence the effects of muscle disease on quality of life. We …

[HTML][HTML] Disease awareness in myotonic dystrophy type 1: an observational cross-sectional study

S Baldanzi, F Bevilacqua, R Lorio, L Volpi… - Orphanet journal of rare …, 2016 - Springer
Abstract Background Myotonic dystrophy type 1 (Steinert's disease or DM1), the most
common form of autosomal dominant muscular dystrophy in adults, is a multisystem …

A randomised controlled trial of acceptance and commitment therapy for improving quality of life in people with muscle diseases

M Rose, CD Graham, N O'Connell, C Vari… - Psychological …, 2023 - cambridge.org
AbstractBackground Chronic muscle diseases (MD) are progressive and cause wasting and
weakness in muscles and are associated with reduced quality of life (QoL). The ACTMuS …

The dystrophic and nondystrophic myotonias

VA Sansone - CONTINUUM: Lifelong Learning in Neurology, 2016 - journals.lww.com
Abstract Purpose of Review: This article describes clinical and electrical myotonia and
provides an update on the classification, diagnosis, and management of myotonic disorders …

Measuring quality of life impairment in skeletal muscle channelopathies

VA Sansone, C Ricci, M Montanari… - European journal of …, 2012 - Wiley Online Library
Background and purpose Fatigue and pain have been previously shown to be important
determinants for decreasing quality of life (Q o L) in one report in patients with non …

Clinical, psychosocial, and central correlates of quality of life in myotonic dystrophy type 1 patients

L Laberge, J Mathieu, J Auclair, É Gagnon… - European …, 2013 - karger.com
Aims: To identify sociodemographic, clinical, and central correlates of health-related quality
of life (HRQoL) in DM1 patients. Methods: 200 DM1 patients had assessments of muscular …

Cognitive impairment and quality of life in patients with myotonic dystrophy type 1

H Fujino, H Shingaki, S Suwazono, Y Ueda… - Muscle & …, 2018 - Wiley Online Library
Introduction This study sought to clarify whether specific cognitive abilities are impaired in
patients with myotonic dystrophy type 1 (DM1) as well as to investigate the relationships …

Significant impact of behavioral and cognitive impairment on quality of life in patients with myotonic dystrophy type 1

V Rakocevic-Stojanovic, S Peric, R Madzarevic… - Clinical neurology and …, 2014 - Elsevier
Objective To assess an impact of cognitive and behavioral impairment on QoL in a larger
cohort of patients with DM1. Methods Sixty six genetically confirmed DM1 patients (22 with …

[HTML][HTML] Amifampridine safety and efficacy in spinal muscular atrophy ambulatory patients: a randomized, placebo-controlled, crossover phase 2 trial

S Bonanno, R Giossi, R Zanin, V Porcelli… - Journal of …, 2022 - Springer
Background Spinal muscular atrophy (SMA) is an autosomal recessive disease where a
deficient amount of SMN protein leads to progressive lower motor neuron degeneration …