scholarly journals Impact of Medical Counseling Program on Quality of Life in Children with Neuromuscular Diseases and their Families

2019 ◽  
Vol 20 (04.2017) ◽  
pp. 0-0
Keyword(s):  
Quality Of Life ◽  
Neuromuscular Diseases ◽  
Counseling Program ◽  
Medical Counseling

scholarly journals Nutraceutical Screening in a Zebrafish Model of Muscular Dystrophy: Gingerol as a Possible Food Aid

Nutrients ◽  
2021 ◽  
Vol 13 (3) ◽  
pp. 998
Author(s):  
Rosario Licitra ◽  
Maria Marchese ◽  
Letizia Brogi ◽  
Baldassare Fronte ◽  
Letizia Pitto ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Muscular Dystrophy ◽  
Genomic Medicine ◽  
Neuromuscular Diseases ◽  
Dystrophin Gene ◽  
Neuromuscular Disorder ◽  
Heme Oxygenase 1 ◽  
Zebrafish Model ◽  
Screening Study

Duchenne muscular dystrophy (DMD), caused by mutations in the dystrophin gene, is an inherited neuromuscular disorder that causes loss of muscle mass and motor skills. In the era of genomic medicine, there is still no known cure for DMD. In clinical practice, there is a growing awareness of the possible importance of nutrition in neuromuscular diseases. This is mostly the result of patients’ or caregivers’ empirical reports of how active substances derived from food have led to improved muscle strength and, thus, better quality of life. In this report, we investigate several nutraceutical principles in the sapje strain of zebrafish, a validated model of DMD, in order to identify possible natural products that, if supplemented in the diet, might improve the quality of life of DMD patients. Gingerol, a constituent of fresh ginger, statistically increased the locomotion of mutant larvae and upregulated the expression of heme oxygenase 1, a target gene for therapy aimed at improving dystrophic symptoms. Although three other compounds showed a partial positive effect on locomotor and muscle structure phenotypes, our nutraceutical screening study lent preliminary support to the efficacy and safety only of gingerol. Gingerol could easily be proposed as a dietary supplement in DMD.

scholarly journals Anorectal Dysfunction in Multiple Sclerosis: A Systematic Review

2012 ◽  
Vol 2012 ◽  
pp. 1-9 ◽  
Author(s):  
Sanober Nusrat ◽  
Elsie Gulick ◽  
David Levinthal ◽  
Klaus Bielefeldt
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Fecal Incontinence ◽  
English Language ◽  
Controlled Trial ◽  
Neuromuscular Diseases ◽  
Anorectal Dysfunction ◽  
Pubmed Database ◽  
Marginal Improvement

Constipation and fecal incontinence are common in patients with neuromuscular diseases. Despite their high prevalence and potential impact on overall quality of life, few studies have addressed anorectal dysfunction in patients with multiple sclerosis (MS). The goal of this paper is to define the prevalence, pathophysiology, impact, and potential treatment of constipation and incontinence in MS patients. Methods. The PubMed database was searched for English language publications between January 1973 and December 2011. Articles were reviewed to assess the definition of the study population, duration, type and severity of MS, sex distribution, prevalence, impact, results of physiologic testing, and treatments. Results. The reported prevalence of constipation and fecal incontinence ranged around 40%. Anorectal dysfunction significantly affected patients with nearly 1 in 6 patients limiting social activities or even quitting work due to symptoms. Caregivers listed toileting as a common and significant burden. The only randomized controlled trial showed a marginal improvement of constipation with abdominal massage. All other reports lacked control interventions and only demonstrated improvement in individuals with milder symptoms. Conclusion. Anorectal dysfunction is a common manifestation in MS that significantly affects quality of life. Therapies are at best moderately effective and often cumbersome, highlighting the need for simple and more helpful interventions.

Effectiveness of Teleassistance at Improving Quality of Life in People with Neuromuscular Diseases

2014 ◽  
Vol 17 ◽  
Author(s):  
Oscar Martínez ◽  
Amaia Jometón ◽  
Manuel Pérez ◽  
Esther Lázaro ◽  
Imanol Amayra ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Interaction ◽  
New Technologies ◽  
Neuromuscular Diseases ◽  
Control Group ◽  
Related Quality ◽  
Health Related ◽  
Low Prevalence ◽  
Psychosocial Domain

AbstractRare neuromuscular diseases (NDs) are a group of inherited or acquired neurological pathologies affecting the muscles and the nervous system. Their low prevalence and high geographical dispersion can cause isolation and difficulties in social interaction between affected equals. New technologies, such as videoconferencing, offer a complementary option for improving the health of this population. The purpose of this study was to assess the effectiveness of a teleassistance program at improving health-related quality of life (HRQoL) through social interaction in adults with NDs. The sample consisted of 45 participants affected by rare NDs. Twenty-four participants were assigned to the experimental group (EG), which participated in the videoconferencing sessions, and 21 to the control group. Three questionnaires were administered: WHO-DAS II, Sickness Impact Profile, and SF-36 Health Survey. Effectiveness was assessed by a pre-post design. An online psychosocial program was applied over three-month period. Data revealed an improvement of the EG in psychosocial variables, e.g. “Getting along with people” (z = –2.289, r = –.47, p ≤ .05) or “Psychosocial Domain” (z = –2.404, r = –.49, p ≤ .05), and in physical variables, e.g. “Life activities” (z = –2.844, r = –.58, p ≤ .05). Social interaction appeared as a relevant factor at improving HRQoL levels. High levels of satisfaction about the teleassistance program were reported.

scholarly journals The prevalence and severity of disease-related disabilities and their impact on quality of life in neuromuscular diseases

2018 ◽  
Vol 41 (14) ◽  
pp. 1676-1681 ◽  
Author(s):  
Isaac Bos ◽  
Klaske Wynia ◽  
Josué Almansa ◽  
Gea Drost ◽  
Berry Kremer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neuromuscular Diseases ◽  
Severity Of Disease

P.10.3 The characteristics of low back pain and its effects on quality of life in patients with neuromuscular diseases

2013 ◽  
Vol 23 (9-10) ◽  
pp. 789-790
Author(s):  
E. Ayvat ◽  
M. Kilinc ◽  
Y. Parlak Demir ◽  
S.A. Yildirim ◽  
E. Tan
Keyword(s):  
Quality Of Life ◽  
Low Back Pain ◽  
Back Pain ◽  
Neuromuscular Diseases ◽  
Low Back

Long-Term Tracheostomy Ventilation in Neuromuscular Diseases: Patient Acceptance and Quality of Life

2000 ◽  
Vol 14 (2) ◽  
pp. 135-139 ◽  
Author(s):  
Pushpa Narayanaswami ◽  
Tulio E. Bertorini ◽  
Rahman Pourmand ◽  
Linda H. Horner
Keyword(s):  
Quality Of Life ◽  
Neuromuscular Diseases ◽  
Patient Acceptance

scholarly journals Evaluating changes in quality of life using QoL-NMD in patients with neuromuscular diseases

2016 ◽  
Vol 59 ◽  
pp. e60
Author(s):  
Antoine Dany ◽  
Amandine Rapin ◽  
Brice Lavard ◽  
Jean-Luc Novella ◽  
Damien Jolly ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neuromuscular Diseases
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