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https://www.readbyqxmd.com/read/27798808/economic-evaluation-in-duchenne-muscular-dystrophy-model-frameworks-for-cost-effectiveness-analysis
#1
Erik Landfeldt, Lars Alfredsson, Volker Straub, Hanns Lochmüller, Katharine Bushby, Peter Lindgren
BACKGROUND: Several treatments are on the horizon for Duchenne muscular dystrophy (DMD), a terminal orphan disease. In many jurisdictions, decisions regarding pricing and reimbursement of these health technologies comprise evidence of value for money. OBJECTIVE: The objective of this study was to develop a cost-effectiveness model based on the Duchenne muscular dystrophy Functional Ability Self-Assessment Tool (DMDSAT), a new rating scale created specifically to measure disease progression in clinical practice and trials and model DMD in economic evaluations, and compare it with two alternative model structures...
October 31, 2016: PharmacoEconomics
https://www.readbyqxmd.com/read/27769758/enablers-and-barriers-of-men-with-duchenne-muscular-dystrophy-transitioning-from-an-adult-clinic-within-a-pediatric-hospital
#2
Sally Lindsay, Laura McAdam, Tania Mahendiran
BACKGROUND: Young men with Duchenne muscular dystrophy (DMD) live into adulthood and need specialized care. However, services for adults are fragmented. We know little about young men's experiences, their parents, and clinicians who support them as they transition to adult care. OBJECTIVE: To explore the enablers and barriers of clinicians, young men, and parents as they transition from an adult DMD clinic within a pediatric hospital to an adult health facility...
October 11, 2016: Disability and Health Journal
https://www.readbyqxmd.com/read/27622153/slacklining-and-stroke-a-rehabilitation-case-study-considering-balance-and-lower-limb-weakness
#3
Charles P Gabel, Natalie Rando, Markus Melloh
To ascertain the effectiveness of slacklining as a supplementary therapy for elderly stroke patients who are functionally non-progressing. This case study involved an 18-mo prospective observation of the management of an 87-year-old female stroke-patient of the left hemisphere with reduced balance, reduced lower limb muscular activation, hypertonia, and concurrent postural deficits. This entailed the initial acute care phase through to discharge to home and 18-mo final status in her original independent living setting...
August 18, 2016: World Journal of Orthopedics
https://www.readbyqxmd.com/read/27450665/living-a-normal-life-in-an-extraordinary-way-a-systematic-review-investigating-experiences-of-families-of-young-people-s-transition-into-adulthood-when-affected-by-a-genetic-and-chronic-childhood-condition
#4
REVIEW
Veronika Waldboth, Christine Patch, Romy Mahrer-Imhof, Alison Metcalfe
INTRODUCTION: The transition into adulthood is a developmental stage within the life cycle. A chronic childhood condition can disrupt this transition and create major challenges for both the young person and his or her family. Little is known about families' experiences when living with a rare genetic disease. Therefore, the purpose of this literature review was to understand experiences of families living with a chronic childhood disease during transition into adulthood by integrating evidence...
October 2016: International Journal of Nursing Studies
https://www.readbyqxmd.com/read/27347814/quality-of-life-of-patients-with-duchenne-muscular-dystrophy-from-adolescence-to-young-men
#5
Yi-Jing Lue, Shun-Sheng Chen, Yen-Mou Lu
PURPOSE: This study investigated quality of life (QOL) in adolescent and young men with Duchenne muscular dystrophy (DMD). METHODS: Health-related QOL and global QOL were assessed with the Short Form 36 (SF-36) and World Health Organization Quality of Life-BREF (WHOQOL-BREF). Associations between functional status and QOL were assessed. RESULTS: All domains of the SF-36 were below Taiwan norms (effect size: -14.2 to -0.5), especially Physical Function, Role Physical, and Social Function...
June 27, 2016: Disability and Rehabilitation
https://www.readbyqxmd.com/read/27005709/menopausal-health-status-of-women-of-kapilvastu-district-of-nepal
#6
N Ghimire, P Dhakal, D Norrish, G Dangal, D Sharma, M Dhimal, K K Aryal, B K Jha, K B Karki
BACKGROUND: Women face numerous health problems in their post-reproductive and menopausal years, including issues such as pelvic pain, incontinence and obstetric fistula. In Nepal, the importance of these health issues is increasing with the aging of the population, yet women are often unable to access adequate health care due to entrenched gender structures and misconceptions regarding menopause. This study aimed to describe the prevalence of menopause, the associated health problems and their severity amongst women aged 40-60 years in Kapilvastu...
September 2015: Journal of Nepal Health Research Council
https://www.readbyqxmd.com/read/26966801/physical-activity-and-the-use-of-standard-and-complementary-therapies-in-duchenne-and-becker-muscular-dystrophies
#7
Katy L de Valle, Zoe E Davidson, Rachel A Kennedy, Monique M Ryan, Kate M Carroll
PURPOSE: To record the use and perceived benefits of mainstream allied health services, complementary therapies, nutritional supplements and structured physical activity in a paediatric population of males with Duchenne or Becker muscular dystrophy. METHOD: A questionnaire was distributed to 125 parents of males with a dystrophinopathy within a tertiary neuromuscular clinic population in Melbourne, Australia. RESULTS: Response rate to the survey was 41%...
2016: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/26773590/-principles-of-multidisciplinary-management-of-duchenne-muscular-dystrophy
#8
B Chabrol, M Mayer
Given the gradual progression observed in Duchenne muscular dystrophy, organization of care in multidisciplinary consultations is essential for optimal management of the different aspects of the disease. Drawing up a care plan is always preceded by a specific consultation for the announcement of the diagnosis with both the parents and the child. Explaining to the child the origin of his problems with simple words, telling him that why he experienced a particular symptom has been understood, is a fundamental step...
December 2015: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/26528276/manipulating-rumen-microbiome-and-fermentation-through-interventions-during-early-life-a-review
#9
REVIEW
David R Yáñez-Ruiz, Leticia Abecia, Charles J Newbold
The nutritional manipulations of the rumen microbiome to enhance productivity and health are rather limited by the resilience of the ecosystem once established in the mature rumen. Based on recent studies, it has been suggested that the microbial colonization that occurs soon after birth opens a possibility of manipulation with potential to produce lasting effects into adult life. This paper presents the state-of-the-art in relation to early life nutritional interventions by addressing three areas: the development of the rumen as an organ in regards to the nutrition of the new-born, the main factors that determine the microbial population that first colonizes and establishes in the rumen, and the key immunity players that contribute to shaping the commensal microbiota in the early stage of life to understand host-microbiome specificity...
2015: Frontiers in Microbiology
https://www.readbyqxmd.com/read/26110685/anaphylaxis-in-adolescents-a-potential-tripartite-management-framework
#10
REVIEW
Bright I Nwaru, Aziz Sheikh
PURPOSE OF REVIEW: The incidence of anaphylaxis is increasing across all ages, but the risk of morbidity and fatality is disproportionately high in adolescents. This may, at least in part, be a consequence of a constellation of potentially modifiable psychosocial factors that tend to manifest during adolescence. This study highlights the shortcomings in and the barriers to effective management of anaphylaxis in adolescents, and proposes an integrated tripartite framework that may help promote successful management...
August 2015: Current Opinion in Allergy and Clinical Immunology
https://www.readbyqxmd.com/read/25859009/smn-deficiency-disrupts-gastrointestinal-and-enteric-nervous-system-function-in-mice
#11
Sara E Gombash, Christopher J Cowley, Julie A Fitzgerald, Chitra C Iyer, David Fried, Vicki L McGovern, Kent C Williams, Arthur H M Burghes, Fedias L Christofi, Brian D Gulbransen, Kevin D Foust
The 2007 Consensus Statement for Standard of Care in Spinal Muscular Atrophy (SMA) notes that patients suffer from gastroesophageal reflux, constipation and delayed gastric emptying. We used two mouse models of SMA to determine whether functional GI complications are a direct consequence of or are secondary to survival motor neuron (Smn) deficiency. Our results show that despite normal activity levels and food and water intake, Smn deficiency caused constipation, delayed gastric emptying, slow intestinal transit and reduced colonic motility without gross anatomical or histopathological abnormalities...
July 1, 2015: Human Molecular Genetics
https://www.readbyqxmd.com/read/25577179/development-of-a-tool-to-describe-overall-health-social-independence-and-activity-limitation-of-adolescents-and-young-adults-with-disability
#12
Chelsea B Deroche, Margaret M Holland, Suzanne McDermott, Julie A Royer, James W Hardin, Joshua R Mann, Deborah Salzberg, Orgul Ozturk, Lijing Ouyang
There is a need for research that focuses on the correlation between self-perceived quality of life (QoL) and the health outcomes of adolescents with disability transitioning to adulthood. To better understand the transition experience of adolescents and young adults with disability, we developed a questionnaire to assess the impact of disability on QoL. We recruited 174 participants who were 15-24 years old and diagnosed with Fragile X syndrome (FXS), spina bifida (SB) or muscular dystrophy (MD) and conducted an exploratory factor analysis to identify factors that characterize QoL...
March 2015: Research in Developmental Disabilities
https://www.readbyqxmd.com/read/25444755/pde5-inhibitors-as-therapeutics-for-heart-disease-diabetes-and-cancer
#13
REVIEW
Anindita Das, David Durrant, Fadi N Salloum, Lei Xi, Rakesh C Kukreja
The phosphodiesterase 5 (PDE5) inhibitors, including sildenafil (Viagra™), vardenafil (Levitra™), and tadalafil (Cialis™) have been developed for treatment of erectile dysfunction. Moreover, sildenafil and tadalafil are used for the management of pulmonary arterial hypertension in patients. Since our first report showing the cardioprotective effect of sildenafil in 2002, there has been tremendous growth of preclinical and clinical studies on the use of PDE5 inhibitors for cardiovascular diseases and cancer...
March 2015: Pharmacology & Therapeutics
https://www.readbyqxmd.com/read/25435264/becoming-a-back-up-carer-parenting-sons-with-duchenne-muscular-dystrophy-transitioning-into-adulthood
#14
Miku Yamaguchi, Machiko Suzuki
The population of adults with Duchenne muscular dystrophy is increasing rapidly. However, information for individuals with DMD and their parents about the transition to adulthood is lacking; young adult sons and their parents may struggle to maintain smooth family functioning and well-being during this period. This study examined the process of change in parental behaviors during their son's transition. The participants were 18 parents with sons aged 15-30 years. Data were obtained from semi-structured interviews and analyzed using a grounded theory approach...
January 2015: Neuromuscular Disorders: NMD
https://www.readbyqxmd.com/read/25215918/disparities-in-health-care-utilization-by-race-among-teenagers-and-young-adults-with-muscular-dystrophy
#15
Orgul D Ozturk, Suzanne McDermott, Joshua R Mann, James W Hardin, Julie A Royer, Lijing Ouyang
BACKGROUND: For people with muscular dystrophy (MD) health care access is crucial and utilization is expected to be high. A multidisciplinary approach is needed for optimal management of symptoms of this rare condition. Regular primary care, specialty care, therapy, and medicine use can improve quality of care and reduce need for emergency treatment and hospitalization. We analyzed health insurance and administrative data to test for racial disparities in regular care use among teenagers and young adults with MD...
October 2014: Medical Care
https://www.readbyqxmd.com/read/25190331/transitioning-to-adulthood-with-a-progressive-condition-best-practice-assumptions-and-individual-experiences-of-young-men-with-duchenne-muscular-dystrophy
#16
Yani Hamdani, Bhavnita Mistry, Barbara E Gibson
PURPOSE: Youth with progressive conditions are living longer, and there is increased health care focus on assisting them with "transitioning" to adult services and adult life. The purpose of this investigation was to examine key discourses and normative assumptions underpinning transitions best practices and how they are reflected in the experiences of young men with Duchenne muscular dystrophy (DMD). METHODS: Using a critical perspective, we qualitatively analyzed influential transitions best practice documents to identify their underpinning discursive assumptions...
2015: Disability and Rehabilitation
https://www.readbyqxmd.com/read/23962318/the-nordic-maintenance-care-program-what-is-maintenance-care-interview-based-survey-of-danish-chiropractors
#17
Corrie Myburgh, Dorthe Brandborg-Olsen, Hanne Albert, Lise Hestbaek
OBJECTIVE: To describe and interpret Danish Chiropractors' perspectives regarding the purpose and rationale for using MC (maintenance care), its content, course and patient characteristics. METHODS: Semi-structured interviews were conducted with 10 chiropractors identified using a stratified, theoretical sampling framework. Interviews covered four domains relating to MC, namely: purpose, patient characteristics, content, and course and development. Data was analysed thematically...
2013: Chiropractic & Manual Therapies
https://www.readbyqxmd.com/read/23645412/-conservative-lymphedema-therapy-lymphological-rehabilitation-treatment
#18
REVIEW
Gert Apich
The most important column in the conservative lymphedema therapy still represents the complex decongestive physical therapy/KPE.This is a multimodal therapy, which consists of four components. (1) skin restoration and/or skin care, (2) manual lymphatic drainage, (3) compression therapy and (4) decongestive exercises. The KPE is also divided into two phases. Phase 1-the decongestion-serves primarily the mobilization and transporting away the banked protein-rich oedema fluid and seamless transition into the Phase 2-the maintenance phase, which serves to preserve the achieved treatment success...
April 2013: Wiener Medizinische Wochenschrift
https://www.readbyqxmd.com/read/23544870/antisense-oligonucleotides-for-the-treatment-of-spinal-muscular-atrophy
#19
REVIEW
Paul N Porensky, Arthur H M Burghes
Spinal muscular atrophy (SMA) is an autosomal recessive disease affecting ∼1 in 10,000 live births. The most striking component is the loss of α-motor neurons in the ventral horn of the spinal cord, resulting in progressive paralysis and eventually premature death. There is no current treatment paradigm other than supportive care, though the past 15 years has seen a striking advancement in understanding of both SMA genetics and molecular mechanisms. A variety of disease-modifying interventions are rapidly bridging the translational gap from the laboratory to clinical trials, including the application of antisense oligonucleotide (ASO) therapy for the correction of aberrant RNA splicing characteristic of SMA...
May 2013: Human Gene Therapy
https://www.readbyqxmd.com/read/22989602/transition-in-duchenne-muscular-dystrophy-an-expert-meeting-report-and-description-of-transition-needs-in-an-emergent-patient-population-parent-project-muscular-dystrophy-transition-expert-meeting-17-18-june-2011-amsterdam-the-netherlands
#20
D G M Schrans, D Abbott, H L Peay, R F Pangalila, E Vroom, N Goemans, J S H Vles, A P Aldenkamp, J G M Hendriksen
No abstract text is available yet for this article.
March 2013: Neuromuscular Disorders: NMD
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