scholarly journals European Cross-Sectional Survey of Current Care Practices for Duchenne Muscular Dystrophy Reveals Regional and Age-Dependent Differences

2016 ◽  
Vol 3 (4) ◽  
pp. 517-527 ◽  
Author(s):  
Julia Vry ◽  
Kathrin Gramsch ◽  
Sunil Rodger ◽  
Rachel Thompson ◽  
Birgit F. Steffensen ◽  
...  
Keyword(s):  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Age Dependent ◽  
Care Practices

S.P.59 Current care practice in Duchenne Muscular Dystrophy in Europe – results of the CARE-NMD cross-sectional survey

2012 ◽  
Vol 22 (9-10) ◽  
pp. 886-887
Author(s):  
J. Vry ◽  
K. Gramsch ◽  
S. Rodger ◽  
V. Antonova ◽  
P. Brabec ◽  
...  
Keyword(s):  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Care Practice ◽  
Cross Sectional Survey ◽  
Cross Sectional

scholarly journals Influence of A Public Health Emergency On Care For Patients With Duchenne Muscular Dystrophy: An Online, Cross-Sectional Survey

2022 ◽  
Author(s):  
Shu Zhang ◽  
Shaoxia Wang ◽  
Yuru Dong ◽  
Xinyu Chen ◽  
Miao Hu ◽  
...  
Keyword(s):  
Public Health ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Public Health Emergency ◽  
Daily Activities ◽  
Rehabilitation Services ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
The Public

Abstract Background: The public health emergency has created challenges for the care of patients, particularly those with chronic diseases such as Duchenne muscular dystrophy. To elucidate the challenges faced by Chinese patients with Duchenne muscular dystrophy during the public health emergency coronavirus disease 2019 pandemic, we conducted an online cross-sectional survey, the responses of which were collected between March 27 and June 30, 2021. Results: In total, valid questionnaire responses were obtained from 2,105 patients, of whom 49 lived in pandemic lockdown areas. Of the 2,056 responders from non-lockdown areas, 42.8% reduced their outside daily activities, 49.4% reduced their use of rehabilitation services, 39.7% postponed regular follow-up appointments, and 40.8% complained of accelerated declines in motor function over the previous year. The corresponding figures for the 49 participants from lockdown areas were almost all higher, with 67.3% reducing outside daily activities, 44.9% reducing their use of rehabilitation services, 79.6% postponing regular follow-up appointments, and 55.1% complaining of accelerated declines in motor function. When asked whether they expected more assistance from society than they had received before the pandemic, 60.8% of patients in non-lockdown areas and 87.8% of those in lockdown areas responded affirmatively. When asked whether they felt more anxious than they had before the pandemic and needed psychological counseling, 11.5% of respondents in non-lockdown areas and 18.4% of respondents in lockdown areas responded affirmatively. In non-lockdown areas, 76% of respondents had at least one telemedicine visit, and 71% of them thought that telemedicine was helpful. In lockdown areas, 91.8% had used telemedicine at least once, and 66.7% of them found it helpful.Conclusions: These public health emergency control measures have affected the care of patients with chronic diseases worldwide, particularly pronounced in lockdown areas. It is imperative that healthcare workers assist patients and establish more robust chronic disease management systems. Telemedicine is an effective model for providing healthcare to such patients.

scholarly journals Impact of Mechanical Ventilation Methods on the Life Perception of Subjects With Duchenne Muscular Dystrophy: French Cross-Sectional Survey

2020 ◽  
Vol 65 (11) ◽  
pp. 1712-1720
Author(s):  
Ghilas Boussaïd ◽  
Caroline Stalens ◽  
Christian Devaux ◽  
Sandrine Segovia-Kueny ◽  
Frédéric Lofaso ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Cross Sectional Survey ◽  
Cross Sectional

scholarly journals Age-Dependent Dysregulation of Muscle Vasculature and Blood Flow Recovery after Hindlimb Ischemia in the mdx Model of Duchenne Muscular Dystrophy

Biomedicines ◽  
2021 ◽  
Vol 9 (5) ◽  
pp. 481
Author(s):  
Paulina Podkalicka ◽  
Olga Mucha ◽  
Katarzyna Kaziród ◽  
Iwona Bronisz-Budzyńska ◽  
Sophie Ostrowska-Paton ◽  
...  
Keyword(s):  
Blood Flow ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Blood Vessels ◽  
Mdx Mice ◽  
Hindlimb Ischemia ◽  
Double Positive ◽  
Functional Studies ◽  
Age Dependent ◽  
Dystrophic Mice

Duchenne muscular dystrophy (DMD), caused by a lack of functional dystrophin, is characterized by progressive muscle degeneration. Interestingly, dystrophin is also expressed in endothelial cells (ECs), and insufficient angiogenesis has already been hypothesized to contribute to DMD pathology, however, its status in mdx mice, a model of DMD, is still not fully clear. Our study aimed to reveal angiogenesis-related alterations in skeletal muscles of mdx mice compared to wild-type (WT) counterparts. By investigating 6- and 12-week-old mice, we sought to verify if those changes are age-dependent. We utilized a broad spectrum of methods ranging from gene expression analysis, flow cytometry, and immunofluorescence imaging to determine the level of angiogenic markers and to assess muscle blood vessel abundance. Finally, we implemented the hindlimb ischemia (HLI) model, more biologically relevant in the context of functional studies evaluating angiogenesis/arteriogenesis processes. We demonstrated that both 6- and 12-week-old dystrophic mice exhibited dysregulation of several angiogenic factors, including decreased vascular endothelial growth factor A (VEGF) in different muscle types. Nonetheless, in younger, 6-week-old mdx animals, neither the abundance of CD31+α-SMA+ double-positive blood vessels nor basal blood flow and its restoration after HLI was affected. In 12-week-old mdx mice, although a higher number of CD31+α-SMA+ double-positive blood vessels and an increased percentage of skeletal muscle ECs were found, the abundance of pericytes was diminished, and blood flow was reduced. Moreover, impeded perfusion recovery after HLI associated with a blunted inflammatory and regenerative response was evident in 12-week-old dystrophic mice. Hence, our results reinforce the hypothesis of age-dependent angiogenic dysfunction in dystrophic mice. In conclusion, we suggest that older mdx mice constitute an appropriate model for preclinical studies evaluating the effectiveness of vascular-based therapies aimed at the restoration of functional angiogenesis to mitigate DMD severity.

scholarly journals Translating Research into Practice in Low-Resource Countries: Progress in Prevention of Maternal to Child Transmission of HIV in Nigeria

2013 ◽  
Vol 2013 ◽  
pp. 1-10 ◽  
Author(s):  
Y. Ogbolu ◽  
E. N. Iwu ◽  
S. Zhu ◽  
J. V. Johnson
Keyword(s):  
Mixed Models ◽  
Infant Feeding Practices ◽  
Child Transmission ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Medical Facilities ◽  
Care Practices ◽  
Sub Saharan ◽  
And Training ◽  
Research And Policy

Background.Research related to prevention of maternal to child transmission (PMTCT) of HIV is dynamic and rapidly changing and has provided evidence-based interventions and policies for practitioners. However, it is uncertain that research and policy guidelines are adequately being disseminated and implemented in resource-constrained countries with the largest burden PMTCT. This study examined current PMTCT practices in 27 public health facilities in Nigeria.Methods.A cross-sectional survey of 231 practicing nurses was conducted. Current PMTCT care practices were evaluated and compared to WHO and national PMTCT policy guidelines. Linear mixed models evaluated the association between PMTCT care practices and training in PMTCT.Results.Most nurses (80%) applied practices involving newborn prophylaxis; yet significant gaps in maternal intrapartum treatment and infant feeding practices were identified. PMTCT training explained 25% of the variance in the application of PMTCT care practices.Conclusion.Key PMTCT practices are not being adequately translated from research into practice. Researchers, policymakers, and clinicians could apply the study findings to address significant knowledge translation gaps in PMTCT. Strategies derived from an implementation science perspective are suggested as a means to improve the translation of PMTCT research into practice in Sub-Saharan African medical facilities.

scholarly journals Autonomic modulation at rest and in response to postural change in adolescents with Duchenne muscular dystrophy: a cross-sectional study

2021 ◽  
Vol 79 (9) ◽  
pp. 766-773
Author(s):  
Mariana Viana Rodrigues ◽  
Mileide Cristina Stoco-Oliveira ◽  
Talita Dias da Silva ◽  
Celso Ferreira ◽  
Heloisa Balotari Valente ◽  
...  
Keyword(s):  
Blood Pressure ◽  
Heart Rate ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Oxygen Saturation ◽  
Cross Sectional Study ◽  
Control Group ◽  
Autonomic Modulation ◽  
Postural Change ◽  
Cross Sectional

ABSTRACT Background: Analysis of autonomic modulation after postural change may inform the prognosis and guide treatment in different populations. However, this has been insufficiently explored among adolescents with Duchenne muscular dystrophy (DMD). Objective: To investigate autonomic modulation at rest and in response to an active sitting test (AST) among adolescents with DMD. Methods: Fifty-nine adolescents were included in the study and divided into two groups: 1) DMD group: adolescents diagnosed with DMD; 2) control group (CG): healthy adolescents. Participants’ weight and height were assessed. Lower limb function, motor limitations and functional abilities of the participants in the DMD group were classified using the Vignos scale, Egen classification and motor function measurement, respectively. The following variables were assessed before, during and after AST: systolic blood pressure (SBP), diastolic blood pressure (DBP), respiratory rate (f), oxygen saturation and heart rate (HR). To analyze the autonomic modulation, the HR was recorded beat-by-beat. Heart rate variability (HRV) indices were calculated in the time and frequency domains. Results: Differences in relation to groups were observed for all HRV indices, except LF/HF, oxygen saturation, HR and f (p < 0.05). Differences in relation to time and the interaction effect between group and time were observed for RMSSD, SD1, SD2, SD1/SD2, LFms2 and LFnu, HFun, SBP and DBP (p < 0.05). Differences in relation to time were also observed for the indice SDNN, FC and f (p < 0.05). Conclusions: Performing the AST promoted reduced autonomic modulation and increased SBP, DBP and HR in adolescents with DMD.

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