scholarly journals Clinical spectrum and the comorbidities of Dravet syndrome in Taiwan and the possible molecular mechanisms

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Chia-Hsuan Huang ◽  
Pi-Lien Hung ◽  
Pi-Chuan Fan ◽  
Kuang-Lin Lin ◽  
Ting-Rong Hsu ◽  
...  

AbstractDravet syndrome (DS) is an uncommon epilepsy syndrome that may negatively affect the patients and their caregivers. However, reliable and valid measures of its impact on caregivers and the characteristics of patients with DS in Taiwan are lacking. This study aimed to describe the characteristics of patients with DS and concerns of their caregivers and establish a baseline frequency of disease characteristics using a cross-sectional survey in Taiwan. We assessed the caregivers of patients with DS using an online anonymous questionnaire. The seizure frequency decreased with age, although lacking statistical significance. Vaccines show no influence on the condition of patients with DS. Our findings revealed the highest impact on the domains affecting the caregivers’ daily life, including additional household tasks, symptom observation, further medical plan, and financial issues. Caregivers also expressed concerns regarding the lack of independence/constant care, seizure control, speech/communication, and impacts on siblings because of long-term care of the patients in parents’ absence. Our findings highlight the significant effects of caring for a child with DS on the lives of their caregivers in Taiwan; these findings will help raise awareness regarding the needs of these families. Furthermore, we discussed the possible pathophysiological mechanisms of associated comorbidities.

2021 ◽  
Author(s):  
Chia-Hsuan Huang ◽  
Pi-Lien Hung ◽  
Pi-Chuan Fan ◽  
Kuang-Lin Lin ◽  
Ting-Rong Hsu ◽  
...  

Abstract Dravet syndrome (DS) is a rare and devastating epilepsy syndrome, and it can affect the patients and their caregivers. However, the lack of a reliable and valid measures of caregiver impact and the characteristic pattern in Taiwan. The purpose of this study was to describe the characteristics of patients with DS and caregivers’ concerns, and to establish a baseline frequency of characteristics of the disease using a cross-sectional survey in Taiwan. We recruit the caregivers of patients with DS and assessed their condition via online anonymous questionnaire. Seizure frequency decreased with age though not statistically significant. Vaccine may not influence the condition of DS. We highlighted the greatest impact on the domains that affect caregivers’ daily life, including additional household tasks, symptoms observation, further medical plan and financial problem. Caregivers may also concern about lack of independence/constant care, seizure control, speech/communication and sibling impacts/long-term care when patents are gone. The current findings highlight the significant life effects of caring for a child with DS in Taiwan, and can be used to raise the attention about the need for these families. The possible pathogenic mechanisms of these comorbidities were also discussed.


2021 ◽  
Vol 2 (3) ◽  
pp. e129-e142 ◽  
Author(s):  
Laura Shallcross ◽  
Danielle Burke ◽  
Owen Abbott ◽  
Alasdair Donaldson ◽  
Gemma Hallatt ◽  
...  

2021 ◽  
Vol 8 (1) ◽  
pp. 15-22
Author(s):  
KR Pandey ◽  
DR Panday ◽  
P Pyakurel ◽  
S Marahatta ◽  
SP Rimal ◽  
...  

Background: COVID-19, a global health crisis of the 21st century, has threatened possibly every aspect of human life. Since the pandemic is not yet over, this study was carried out among undergraduate students of a medical institute in Nepal to assess and boost their KAP status on the disease. Material and methods: It was an online cross-sectional census survey performed among consenting undergraduate healthcare students of BPKIHS. A self-made and validated questionnaire assessing KAP on COVID-19 was prepared in Google form and distributed online among target students. The study population was 745. Both descriptive and inferential analysis of the data was performed. Student’s T-Test and one-way ANOVA were applied for which level of statistical significance was kept at p<0.05. Results: Ninety-six students participated in a pilot-study (Cronbach α= 0.792). The response rate was 76.27%. Most participants (76.76%) were from Nepal.  The male/female ratio was 0.76. Most (59.2%) had not participated in such studies before. For 93.54%, the source of information was the internet. Assessed by questionnaire, right Knowledge (n=16) was 85.06% ± 8.81%; right Attitude (n=6) was 65.00% ± 16.16 and right Practice (n=6) was 82.88%± 8.50%. Male were more knowledgeable about the disease (p=0.011). However, females secured higher in practical aspects (p=0.000). Indian students possessed better knowledge (p=0.005) and a better attitude (p=0.033). MBBS students had better knowledge (p=0.000), but Nursing students secured higher in Practice (p=0.012). Attitude is better in the earlier years (p=0.045). Conclusion: We assessed KAP related to COVID-19 via score among healthcare undergraduate students. Different co-factors do impact students’ overall KAP status.


2020 ◽  
Author(s):  
Henry Yu-Hin Siu ◽  
Lorand Kristof ◽  
Dawn Elston ◽  
Abe Hafid ◽  
Fred Mather

Abstract Background: The COVID-19 pandemic is a significant public health emergency that impacts all sectors of healthcare. The negative health outcomes for the COVID-19 infection have been most severe in the frail elderly dwelling in Canadian long-term care (LTC) homes.Methods: An online cross-sectional survey of Ontario LTC Clinicians working in LTC homes in Ontario Canada was conducted to provide the LTC clinician perspective on the preparedness and engagement of the LTC sector during the COVID-19 pandemic. The survey questionnaire was developed in collaboration with the Ontario Long-Term Care Clinicians organization (OLTCC) and was distributed between March 30, 2020 to May 25, 2020. All registered members of the OLTCC and Nurse-led LTC Outreach Teams were invited to participate. The primary outcomes were: 1) the descriptive report of the screening measures implemented, communication and information received, and the preparation of the respondent’s LTC home to a potential COVID-19 outbreak; and 2) the level of agreement, as reported using a five-point Likert scale), to COVID-19 preparedness statements for the respondent’s LTC home was also assessed.Results: The overall response rate was 54% (160/294). LTC homes implemented a wide range of important interventions (e.g. instituting established respiratory isolation protocols, active screening of new LTC admissions, increasing education on infection control processes, encouraging sick staff to take time off, etc). Ample communications pertinent to the pandemic were received from provincial LTC organizations, the government and public health officials. However, the feasibility of implementing public health recommendations, as well as the engagement of the LTC sector in pandemic planning were identified as areas of concern. Medical director status was associated with an increased knowledge of local implementation of interventions to mitigate COVID-19, as well as endorsing increased access to reliable COVID-19 information and resources to manage a potential COVID-19 outbreak in their LTC home.Conclusions: This study highlights the communication to and implementation of recommendations in the Ontario LTC sector, despite some concerns regarding feasibility. Importantly, LTC clinician respondents clearly indicated that better engagement with LTC leaders is needed to plan a coordinated pandemic response.


2021 ◽  
Author(s):  
Ferdinand Mukoso ◽  
Aliocha Nkodila ◽  
François Lepira ◽  
Pascal Bayauli ◽  
Yves Lubenga ◽  
...  

Abstract Background and aim: In limited resource settings, reliable epidemiological data generated from hypertension high risk geographical areas or people is a prerequisite for the planning of proven and effective interventions. The aim of the present survey was to assess the prevalence, awareness, control and factors associated with hypertension in adults living in the port City of Bandundu, located in the southwestern part of DRC.Methods: a cross-sectional survey using a modified WHO STEPwise questionnaire for data collection during face-to face interviews was conducted from 1st May to 30th October 2018. A multistage cluster sampling method was used and inclusion criteria were age ≥18 years and informed consent. Information on demographic parameters, behavioral lifestyles, anthropometric and blood pressure (BP) measurements was obtained. Hypertension was defined as an average of two BP ≥ 140/90 mmHg or self-reported history of antihypertensive medication use. Independent factors associated with hypertension were identified using logistic regression analysis. P<0.05 defined the level of statistical significance. Results: The prevalence of hypertension was 34,5% (Women 36,6 %). Older age (p<0.001), subclinical atherosclerosis (p= 0.021), sleep duration <8 hours (p<0.002), diabetes mellitus (p<0.001), and obesity (p= 0.009) emerged as main cardiovascular risk factors associated with hypertension.Conclusion: Hypertension was characterized by a high prevalence, low rate of awareness and suboptimal BP control, high cardiovascular risk and associated sleep duration and obesity as modifiable risk factors.


2019 ◽  
Vol 12 (3) ◽  
pp. 472
Author(s):  
Ludmilla Cavarzere de Oliveira ◽  
Luis Hernan Contreras Pinochet ◽  
Ricardo Luiz Pereira Bueno ◽  
Mauri Aparecido de Oliveira

The objective of this research was to analyze the effect of gamification on intention to use online training from the partial validation of the UTAUT model for qualification of members and servers of the Regional Labor Court of the 2nd Region (TRT-2). The study analyzed the relationship between constructs performance expectancy, effort expectancy, facilitating conditions, and familiarity with the intention to use gaming in distance media.  This was conducted through an empirical application, which used the Structural Equation Modeling (SEM) for data analysis. The research was a single cross-sectional survey, carried out with TRT-2 members and servers who participated in the distance-feeding course ‘Healthy Living’ in 2015. Of the four hypotheses, only familiarity (F) was not significant as it did not serve as a behavioral intentions (BI) predictor of gamification for distance learning courses. Some explanations for such phenomenon may be career promotion and additional qualifications, learning by doing and sample size. The results confirmed that most hypotheses have a high statistical significance of the structural paths and have demonstrated that the model proposed in this study is consistent and can be applied in future studies with appropriate adjustments.


2021 ◽  
Author(s):  
Helex Kayembe ◽  
Yunjian Lin ◽  
George N. Chidimbah Munthali ◽  
Wu Xuelian ◽  
Lazarus Obed Livingstone Banda ◽  
...  

Abstract Background: Micro Finance Institutions (MFIs) have been used as a tool for poverty alleviation in many developing economies globally, including Malawi. However, their sustainability in many countries has been dependent solely on loan repayment, donor aid, and subsidies. Aim: This study aimed at investigating the factors that influence the sustainability of MFIs in Malawi. Methods: A cross-sectional survey was conducted from November to December 2020 among the MFIs employees in the central region of Malawi. Convenience and purposive sampling techniques were used to collect data online using a google form sent via social media platforms. Data were analyzed using IBM SPSS software with Statistical significance placed at .05. Results: 120 respondents completed the survey representing a 79.3% response rate, of which 63% were male. The majority of the respondents fell within the age group of 31-40 years, representing 58%, having attained universities and vocational colleges' education level, representing 32.8%. With an experience of above 16 years, representing 41.2% of which were branch managers, representing 49.6%. The results of the ordinary least square regression indicated that reporting and loan management system (RLMS) (β=0.200, P=0.021), corporate-governance (β=0.257, P=0.004), and commercialization (β=0.161, P=0.047) were positively significantly influencing the sustainability of MFI. On the other hand, loan design/type (β =-0.211, P=0.006), loan portfolio management (β =-0.179, P=0.050) were found to be negatively impacting the MFI. Lastly, variables of over-indebtedness (B= 0.077, P=0.426), loan disbursement (β =0.121, P=0.104) were found statistically insignificant. Conclusion: Our study argues that commercialization, standardized reporting, and effective loan portfolio management systems, stakeholder-based approach to corporate governance, and favored board independence through scale and cost management is critical to improving MFIs' financial sustainability.


2020 ◽  
pp. 073346482096125
Author(s):  
Jennifer Baumbusch ◽  
Isabel Sloan Yip ◽  
Sharon Koehn ◽  
R. Colin Reid ◽  
Preet Gandhi

Family Councils are independent, self-determining groups composed of family members (inclusive of friends) who have assembled with the main purpose of protecting and improving the quality of life of those living in long-term care (LTC) homes. This study aimed to describe the prevalence and characteristics of Family Councils in British Columbia, Canada. We conducted a cross-sectional survey with administrators of 259 homes and received 222 usable surveys. Of the 151 LTC homes that had Family Councils, it was most common for the homes to be larger (>50 residents), accredited, privately owned, and located in urban areas. Perceived barriers to Family Councils included lack of interest, tendency to focus on individual complaints, and the transitory nature of families. Perceived benefits of Family Councils included enhanced communication between staff and families, peer support, and collective advocacy. Recommendations focus on enhancing accessibility, information sharing, and meaningfulness of Family Councils to improve family engagement.


2019 ◽  
Vol 27 (7) ◽  
pp. 1546-1553 ◽  
Author(s):  
Shaohua Hong ◽  
Ping Yu ◽  
Xueping Chen ◽  
Shiyu Qian

Sign in / Sign up

Export Citation Format

Share Document