scholarly journals Effects of Teleassistance on the Quality of Life of People With Rare Neuromuscular Diseases According to Their Degree of Disability

2021 ◽  
Vol 12 ◽  
Author(s):  
Oscar Martínez ◽  
Imanol Amayra ◽  
Juan Francisco López-Paz ◽  
Esther Lázaro ◽  
Patricia Caballero ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neuromuscular Diseases ◽  
Psychosocial Interventions ◽  
Psychosocial Aspects ◽  
Care Services ◽  
Health And Social Care ◽  
Degree Of Disability ◽  
Geographical Dispersion ◽  
Low Prevalence

Rare neuromuscular diseases (RNMDs) are a group of pathologies characterized by a progressive loss of muscular strength, atrophy, fatigue, and other muscle-related symptoms, which affect quality of life (QoL) levels. The low prevalence, high geographical dispersion and disability of these individuals involve difficulties in accessing health and social care services. Teleassistance is presented as a useful tool to perform psychosocial interventions in these situations. The main aim of this research is to assess the effects of a teleassistance psychosocial program on the QoL levels of people with RNMDs who have different levels of disability. A sample of 73 participants was divided into an experimental group (n = 40), which participated in the intervention, and a control wait list group (n = 33). QoL was evaluated through the SIP and the SF-36, and disability through the WHO-DAS II. The participants with a moderate to severe level of disability were those who most benefited from the intervention. The results also revealed that the psychosocial teleassistance program was suitable to improve physical and psychosocial aspects of people suffering from a rare neuromuscular disease with a moderate level of disability, but just psychosocial aspects in those with a severe level of disability.

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 Promoting Psychosocial Life of Persons with Epilepsy

2004 ◽  
Vol 2 (2) ◽  
pp. 80
Author(s):  
Prakashi Rajaram ◽  
Shreedevi A U ◽  
Preeti Bhatkhande
Keyword(s):  
Quality Of Life ◽  
Psychosocial Interventions ◽  
Psychosocial Aspects ◽  
Specific Reference ◽  
Psychosocial Implications

Epilepsy is a long-standing, disabling illness, which has various psychosocial implications for people who suffer from it. This article reviews literature on the psychosocial aspects of epilepsy. The psychosocial aspects reviewed are with specific reference to certain factors like: family, children, marriage, employment and quality of life. The article also presents a brief review on the psychosocial interventions and suggests further interventions to help persons suffering from epilepsy.

Psychosocial Aspects of Quality of Life for Inflammatory Bowel Disease

2006 ◽  
Author(s):  
Carmen E. Curtis ◽  
Gary W. Harper ◽  
Leonard A. Jason ◽  
Brigida Hernandez
Keyword(s):  
Quality Of Life ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Psychosocial Aspects ◽  
Inflammatory Bowel

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 The quality of life in the relatives of Wolfram’s syndrome patients

2014 ◽  
Vol 5 (1) ◽  
pp. 89-97
Author(s):  
Gema Esteban ◽  
Mónica Ruano ◽  
Isabel Motero
Keyword(s):  
Quality Of Life ◽  
Diabetes Mellitus ◽  
Genetic Basis ◽  
Clinical Symptoms ◽  
Daily Life ◽  
Wolfram Syndrome ◽  
Clinical Aspects ◽  
The Family ◽  
Low Prevalence

Wolfram Syndrome (WS) is a rare disease (RD) with an estimated prevalence of 1/770,000 inhabitants. It is considered a multisystemic, chronic and progressive disease.WS diagnosis implies devastating consequences at physical, educational and emotional levels. WS is also known by the acronym DIDMOAD, derived from the first letters of the main clinical symptoms: Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy, and Deafness. Rare diseases are characterized by their low prevalence and the lack of knowledge on the pathophysiology and treatment of them. Interestingly, around 80% of RD have a genetic basis, and this fact causes doubts and uncertainties in the couples, about the idea of having another child. The existence of a RD in a family, alters significantly the relationships and the quality of life within the family. The present work remarks the huge value of psychosocial aspects in order to pay an adequate attention to these patients, not only taking care of the clinical aspects. The main purpose of this study has been to ascertain the quality of life of Wolfram’s syndrome affected patients, and its impact in the daily life.

scholarly journals Clinical and cost evaluation of intensive support team (IST) models for adults with intellectual disabilities who display challenging behaviour: a comparative cohort study protocol

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e043358
Author(s):  
Angela Hassiotis ◽  
Athanasia Kouroupa ◽  
Rebecca Jones ◽  
Nicola Morant ◽  
Ken Courtenay ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cost Effectiveness ◽  
Intellectual Disabilities ◽  
Online Survey ◽  
Service Use ◽  
Cost Evaluation ◽  
Challenging Behaviour ◽  
Health And Social Care ◽  
Adults With Intellectual Disabilities

IntroductionApproximately 17% of adults with intellectual disabilities (ID) living in the community display behaviours that challenge. Intensive support teams (ISTs) have been recommended to provide high-quality responsive care aimed at avoiding unnecessary admissions and reducing lengthy inpatient stays in England. We have identified two models of ISTs (model 1: enhanced provision and model 2: independent provision). This study aims to investigate the clinical and cost-effectiveness of the two models of ISTs.Methods and analysisA cohort of 226 adults with ID displaying behaviour that challenges who receive support from ISTs from each model will be recruited and assessed at baseline and 9 months later to compare the clinical and cost-effectiveness between models. The primary outcome is reduction in challenging behaviour measured by the Aberrant Behaviour Checklist-Community (ABC-C). The mean difference in change in ABC score between the two IST models will be estimated from a multilevel linear regression model. Secondary outcomes include mental health status, clinical risk, quality of life, health-related quality of life, level of functioning and service use. We will undertake a cost-effectiveness analysis taking both a health and social care and wider societal perspective. Semistructured interviews will be conducted with multiple stakeholders (ie, service users, paid/family carers, IST managers/staff) to investigate the experience of IST care as well as an online survey of referrers to capture their contact with the teams.Ethics and disseminationThe study was approved by the London–Bromley Research Ethics Committee (REC reference: 18/LO/0890). Informed consent will be obtained from the person with ID, or a family/nominated consultee for those lacking capacity and from his/her caregivers. The findings of the study will be disseminated to academic audiences, professionals, experts by experience and arm’s-length bodies and policymakers via publications, seminars and digital platforms.Trial registration numberClinicalTrials.gov Registry (NCT03586375).

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.

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