scholarly journals Effect of the COVID-19 Pandemic on Children With SMA Receiving Nusinersen: What Is Missed and What Is Gained?

2021 ◽  
Vol 12 ◽  
Author(s):  
Caterina Agosto ◽  
Eleonora Salamon ◽  
Luca Giacomelli ◽  
Simonetta Papa ◽  
Francesca Benedetti ◽  
...  
Keyword(s):  
Spinal Muscular Atrophy ◽  
Social Issues ◽  
Muscular Atrophy ◽  
Pediatric Palliative Care ◽  
Care Centre ◽  
Or Management ◽  
Short And Long Term ◽  
Children In Care

Nusinersen is the first oligonucleotide-based drug that is approved for the treatment of spinal muscular atrophy. In January 2020, the WHO declared COVID-19 a pandemic and nusinersen-provider centers had to postpone planned infusions for some children along with other related interventions. Considering the important contribution that the intrathecal infusions and other support activities could have on the quality of life of spinal muscular atrophy patients and their families, this emergency could have a relevant impact on the course of the pathology. The present work aims to assess the clinical and social issues that arise for spinal muscular atrophy children in care at the referral pediatric palliative care Centre of Padua (Veneto) from a delay in nusinersen infusions, resulting from the contingent COVID-19 restrictions. This evaluation has been carried out in both the short and long term after the first lockdown period and can be considered as a “proxy” of a situation of a possible delay in administration or management of infusions, due to other different causes.

QUALITY OF LIFE PROBLEMS OF GYNECOLOGICAL CANCER PATIENTS

2017 ◽  
Vol 63 (3) ◽  
pp. 368-374
Author(s):  
Olga Churuksaeva ◽  
Larisa Kolomiets
Keyword(s):  
Quality Of Life ◽  
Gynecological Cancer ◽  
Social Aspects ◽  
Cancer Data ◽  
Life Problems ◽  
Anticancer Treatment ◽  
Short And Long Term ◽  
The Relationship

Due to improvements in short- and long-term clinical outcomes a study of quality of life is one of the most promising trends in oncology today. This review analyzes the published literature on problems dealing with quality of life of patients with gynecological cancer. Data on quality of life with respect to the extent of anticancer treatment as well as psychological and social aspects are presented. The relationship between quality of life and survival has been estimated.

Long‐term benefits of nusinersen in a child affected by cystic fibrosis and spinal muscular atrophy type 1

2021 ◽  
Author(s):  
Giorgia Bruno ◽  
Bernadette Donnarumma ◽  
Alessia Inverardi ◽  
Paolo Buonpensiero ◽  
Angela Sepe ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Spinal Muscular Atrophy ◽  
Muscular Atrophy ◽  
Spinal Muscular Atrophy Type

Quality of life and patient-centered outcomes following atrial fibrillation ablation: short- and long-term perspectives to improving care

2012 ◽  
Vol 10 (7) ◽  
pp. 889-900 ◽  
Author(s):  
Sanghamitra Mohanty ◽  
Luigi Di Biase ◽  
Rong Bai ◽  
Pasquale Santangeli ◽  
Agnes Pump ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Atrial Fibrillation ◽  
Atrial Fibrillation Ablation ◽  
Patient Centered ◽  
Short And Long Term

Prospective Assessment of Short- and Long-Term Quality of Life After Ablation for Atrial Fibrillation

2011 ◽  
Vol 23 (2) ◽  
pp. 121-127 ◽  
Author(s):  
STEPHANIE FICHTNER ◽  
ISABEL DEISENHOFER ◽  
SIBYLLE KINDSMÜLLER ◽  
MARIJANA DZIJAN-HORN ◽  
STYLIANOS TZEIS ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Atrial Fibrillation ◽  
Prospective Assessment ◽  
Short And Long Term

scholarly journals Sarcopenic Obesity: Definition, Health Consequences and Clinical Management

2018 ◽  
Vol 12 (1) ◽  
pp. 70-73 ◽  
Author(s):  
Marwan El Ghoch ◽  
Simona Calugi ◽  
Riccardo Dalle Grave
Keyword(s):  
Psychosocial Functioning ◽  
Clinical Management ◽  
European Association ◽  
Short Communication ◽  
Sarcopenic Obesity ◽  
Future Research ◽  
Body Fat Mass ◽  
Short And Long Term

Over the last decade, a new condition, which occurs in the presence of both sarcopenia and obesity, has been termed “sarcopenic obesity”. The term describes the coexistence of obesity, defined as the increase in body fat mass deposition, and sarcopenia, defined as the reduction in lean mass and muscle strength. However, many uncertainties still surround the condition of sarcopenic obesity in terms of its definition, the adverse short- and long-term health effects (i.e., medical disease, psychosocial functioning, quality of life and mortality) and its clinical management. The aim of this short communication is to emphasize some crucial aspects that future research should take into account in order to avoid bias and misinterpretations and to underline that the study of sarcopenic obesity should be considered a scientific and clinical priority, as reported by the European Society for Clinical Nutrition and Metabolism (ESPEN) and the European Association for the Study of Obesity (EASO).

scholarly journals Assessment of Implicit Interests through an Unobtrusive Computer Task. Their Relations with Career Decision, Anxiety, and Personality Traits

2021 ◽  
Vol 18 (23) ◽  
pp. 12366
Author(s):  
Antoni Castelló ◽  
Ramon Cladellas
Keyword(s):  
Personality Traits ◽  
Compulsory Education ◽  
Career Decision ◽  
Computer Tool ◽  
Efficient Tool ◽  
Short And Long Term ◽  
Career Preferences ◽  
Important Shift

Adolescence is a period where youngsters still do not know much about themselves. That makes some decisions, like those concerning vocational elections, a complicated issue that has important consequences for their life. The main goal of this piece of research is to measure implicit interests using a situated, unobtrusive computer tool (PrUnAs: Preferences Unobtrusive Assessment) as well as its connection with anxiety and personality traits: neuroticism, extraversion, self-efficacy, optimism, consciousness, and openness. Sample: 304 16-year-old adolescents enrolled in the last course of compulsory education. Instruments: Computer programs were used to measure implicit interests, career preferences, and to self-descript personality traits; finally, the paper-and-pencil test Stai was applied to measure anxiety. Results: Concordance between implicit interests and explicit choices was less than 50%. The software developed for assessing implicit interests not only proved to be an efficient tool to make them arise but also a good predictor of anxiety. Conclusions: Implicit interests and explicit elections are not the same. The approach from implicit preferences is an important shift in the approximation to vocational guiding and to reduce youngsters’ indecision level. Beyond vocational choice, this information may improve the short- and long-term quality of life and mental health.

scholarly journals Selected life quality variables of women treated surgically due to intertrochanteric femur fractures in the aspect of nursing and rehabilitation standards

2018 ◽  
Vol 21 (3) ◽  
pp. 4-13
Author(s):  
Małgorzata Kamińska ◽  
Joanna Golec ◽  
Dorota Czechowska
Keyword(s):  
Quality Of Life ◽  
Femur Fracture ◽  
Femoral Fractures ◽  
Femur Fractures ◽  
Short And Long Term ◽  
Intertrochanteric Femur Fracture ◽  
Long Term Observation ◽  
Nursing Standards

Introduction: The aim of presented study was to evaluate selected quality of life indicators for women treated surgically due to intertrochanteric femur fractures in terms of implementation of physiotherapeutic and nursing standards. Clinical Hospital in Krakow (5WSK) within the period from January 2015 to December 2016. At that time, 145 women with intertrochanteric femur fracture were admitted to the hospital. The age of the patients ranged between 58 and 92 years, with an average of 83.6 years. The following questionnaires and score scales were used to assess the quality of life: Short Pfeiffer Mental Status Questionnaire (SPMSQ), Instrumental Activities of Daily Living (IADL) scale, SF-36 Quality of Life Questionnaire, Barthel scale, HOOS scale, Geriatric Depression Scale (GDS) by Yesavage, the author’s questionnaire on rehabilitation care problems related to urinary tract infections, bed sores, pneumonia, gastrointestinal disorders, gastrointestinal infections and thromboembolic complications as well as survival rate. Results and conclusions: 1. The quality of life of women operated because of intertrochanteric femoral fractures using an intramedullary Gamma nail had deteriorated in both short and long-term observation. 2. Maintenance and individualization of nursing standards and rehabilitation in women treated surgically due to intertrochanteric femoral fractures had a positive effect on the overall process of their treatment. 3.The level of physical activity declared by women operated due to intertrochanteric femur fracture prior to the occurrence of these fractures, has a signifi cant effect on their functional results in short and long-term observation. The higher the level of physical activity of these patients before the fracture, the more favourable was the functional outcome. 4. The level of mood and self-acceptance of the disease in women treated surgically for this fracture had signifi cant impact on the process of their nursing as well as rehabilitation, and on functional status in short and long-term follow-up. The higher the level of mood and self-acceptance of the disease in these women, the better the process of their nursing, rehabilitation and the functional outcome.

scholarly journals Effect of COVID-19 pandemic on perceptions and career goals of undergraduate tourism students in Ecuador

Ciencia Unemi ◽  
2021 ◽  
Vol 14 (37) ◽  
pp. 15-28
Author(s):  
Maria José Ortiz Zurita ◽  
Lluís Coromina Soler
Keyword(s):  
Higher Education ◽  
Tourism Industry ◽  
Quantitative Approach ◽  
Career Goals ◽  
Tourist Destinations ◽  
Professional Goals ◽  
Short And Long Term ◽  
Professional Perceptions

This paper explored the perceptions and career goals of undergraduate tourism students, before and during the pandemic COVID-19, in the Universidad Estatal de Milagro, in Milagro, Ecuador. The study is based on a quantitative approach. The sample is made up of 207 students during 2018 (before the COVID-19 pandemic) and 161 students in 2020 (during COVID-19). The questionnaire included questions about professional perceptions and questions about the professional goals that students have in the short and long term. Finally, perceptions exclusively related to COVID-19 were measured.  The results showed that the vast majority of the students are highly motivated and committed to pursue a career in the tourism industry. A high percentage of the participants expressed their desire to do a Tourism master degree and undertake their own tourism businesses, despite the uncertainty now generated by COVID-19. The findings also reaffirmed the importance of guiding improvements on tourism higher education and tourism industry, with the aim of ensuring the quality of the tourist services, with highly skilled professionals, especially in emerging tourist destinations as Ecuador.

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