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

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 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

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.

Decision-Making Regarding Ventilator Support in Children with SMA Type 1—A Cross-Sectional Survey among Physicians

2019 ◽  
Vol 50 (06) ◽  
pp. 359-366
Author(s):  
Astrid Pechmann ◽  
Thorsten Langer ◽  
Janbernd Kirschner
Keyword(s):  
Decision Making ◽  
Mechanical Ventilation ◽  
Informed Consent ◽  
Muscular Atrophy ◽  
Neuromuscular Disorder ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Ventilator Support ◽  
Case Vignettes

AbstractSpinal muscular atrophy (SMA) is a neuromuscular disorder characterized by muscle atrophy and severe proximal muscle weakness. In the absence of curative treatment, it has been controversial whether critically ill infants with SMA type 1 should receive ventilator support. The aim of this study was to investigate the process of decision-making regarding ventilator support in children with SMA type 1 from the perspectives of physicians. A web-based survey with 17 questions and 2 case vignettes was conducted in 671 physicians in Germany and Switzerland from 12/2016 to 03/2017. The survey focused on factors influencing the decision about ventilator support and the content in informed consent discussions. Additionally, physicians were asked about their general attitude towards mechanical ventilation in children with SMA type 1 and their hypothetical clinical management in emergency settings using case vignettes. Hundred and sixty-five physicians participated in the survey (50.3% child neurologists, 18.8% specialists for ventilator support, 6.1% pediatric palliative care physicians, and 6.1% with more than one of these specializations). Of all physicians, 44.2% confirmed to have experience with SMA type 1 patients using ventilator support. In summary, our results show that physicians' attitudes and experiences about mechanical ventilation in children with SMA type 1 vary considerably and are likely to influence the outcome in informed consent discussions and the hypothetical management in emergency settings.

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