scholarly journals Elosulfase Alfa Treatment in Morquio A Patients in Iran: A Before and After Study

2021 ◽  
Vol In Press (In Press) ◽  
Author(s):  
Mohammadreza Alaei ◽  
Marjan Shakiba ◽  
Hedyeh Saneifard ◽  
Ghamartaj Khanbabaee ◽  
Mohammadreza Khalilian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Standard Dose ◽  
Lysosomal Storage ◽  
Morquio A ◽  
Before And After ◽  
The Impact ◽  
Before And After Study ◽  
Morquio A Syndrome ◽  
Elosulfase Alfa

Background: Morquio A, an autosomal recessive lysosomal storage disease, is caused by a defect in the enzyme N-acetyl-galactosamine-6-sulfatase. This leads to the accumulation of the glycosaminoglycans chondroitin-6-sulfate (C6S) and keratan sulfate (KS), resulting in various skeletal manifestations, multisystemic impairments, and significant morbidities. Objectives: This study aimed to evaluate the impact of the addition of elosulfase alfa to the hospital protocol on treating Iranian pediatricians with Morquio A syndrome. Methods: A before and after study was conducted on ten patients with Morquio A syndrome diagnosis from 2019 to 2020. Elosulfase alfa was prescribed with the standard dose of 2 mg/kg/weekly IV infusion for 54 weeks. Then, growth indices, quality of life, and cardiopulmonary data were collected by research assistants using a pre-designed check. Data were entered in SPSS version 23. Quantitative variables were compared between the two periods using the Student's t-test, and qualitative variables were compared using the χ2 test or Fisher's exact test. Results: Ten pediatricians with MPS IV were included, seven of whom were female, with the mean age of 5.8 ± 2.3 years. The meantime for walking 6 m (P = 0.005), standing (P = 0.005), the stair climb test (P = 0.007), and quality of life (P = 0.015) had significant statistical difference before and after treatment by elosulfase alfa. Conclusions: The addition of elosulfase alfa in patients with Morquio A syndrome was associated with a significant improvement outcome in the ‘after’ treatment period.

Strategic Role of Zakat in Multidimensional Quality of Life in Sijunjung, Indonesia

2018 ◽  
Vol 15 (1) ◽  
pp. 55-72
Author(s):  
Herlin Hamimi ◽  
Abdul Ghafar Ismail ◽  
Muhammad Hasbi Zaenal
Keyword(s):  
Quality Of Life ◽  
Positive Impact ◽  
Wealth Distribution ◽  
Absolute Poverty ◽  
Before And After ◽  
The Status ◽  
Being There ◽  
The Impact

Zakat is one of the five pillars of Islam which has a function of faith, social and economic functions. Muslims who can pay zakat are required to give at least 2.5 per cent of their wealth. The problem of poverty prevalent in disadvantaged regions because of the difficulty of access to information and communication led to a gap that is so high in wealth and resources. The instrument of zakat provides a paradigm in the achievement of equitable wealth distribution and healthy circulation. Zakat potentially offers a better life and improves the quality of human being. There is a human quality improvement not only in economic terms but also in spiritual terms such as improving religiousity. This study aims to examine the role of zakat to alleviate humanitarian issues in disadvantaged regions such as Sijunjung, one of zakat beneficiaries and impoverished areas in Indonesia. The researcher attempted a Cibest method to capture the impact of zakat beneficiaries before and after becoming a member of Zakat Community Development (ZCD) Program in material and spiritual value. The overall analysis shows that zakat has a positive impact on disadvantaged regions development and enhance the quality of life of the community. There is an improvement in the average of mustahik household incomes after becoming a member of ZCD Program. Cibest model demonstrates that material, spiritual, and absolute poverty index decreased by 10, 5, and 6 per cent. Meanwhile, the welfare index is increased by 21 per cent. These findings have significant implications for developing the quality of life in disadvantaged regions in Sijunjung. Therefore, zakat is one of the instruments to change the status of disadvantaged areas to be equivalent to other areas.

Effects of use of an eHealth platform e-Vita for COPD patients on disease specific quality of life domains

2020 ◽  
Keyword(s):  
Quality Of Life ◽  
Functional State ◽  
Mental State ◽  
Self Management ◽  
Copd Patients ◽  
Before And After ◽  
Ehealth Intervention ◽  
The Impact ◽  
Disease Specific

Background: Integrated disease management with self-management for Chronic Obstructive Pulmonary Disease (COPD) is effective to improve clinical outcomes. eHealth can improve patients’ involvement to be able to accept and maintain a healthier lifestyle. Eventhough there is mixed evidence of the impact of eHealth on quality of life (QoL) in different settings. Aim: The primary aim of the e-Vita-COPD-study was to investigate the effect of use of eHealth patient platforms on disease specific QoL of COPD patients. Methods: We evaluated the impact of an eHealth platform on disease specific QoL measured with the clinical COPD questionnaire (CCQ), including subscales of symptoms, functional state and mental state. Interrupted time series (ITS) design was used to collect CCQ data at multiple time points. Multilevel linear regression modelling was used to compare trends in CCQ before and after the eHealth intervention. Results: Of 742 invited COPD patients, 244 signed informed consent. For the analyses, we only included patients who actually used the eHealth platform (n = 123). The decrease of CCQ-symptoms was 0,20% before the intervention and 0,27% after the intervention; this difference was statistically significant (P=0.027). The decrease of CCQ-mental was 0,97% before the intervention and after the intervention there was an increase of 0,017%; this difference was statistically significant (P=0,01). No significant difference was found in the slopes of CCQ (P=0,12) and CCQ-function (P=0,11) before and after the intervention. Conclusion: The e-Vita eHealth platform had a potential beneficial impact on the CCQ-symptoms of COPD patients, but not on functional state. The CCQ-mental state remained stable after the intervention, but this was a deterioration compared to the improving situation before the start of the eHealth platform. In conclusion, this study shows that after the introduction of the COPD platform, patients experienced fewer symptoms, but their mental state deteriorated slightly at the same time. Therefore, health care providers should be aware that, although symptoms improve, there might be a slight increase in anxiety and depression after introducing an eHealth intervention to support self-management.

Impact of adenotonsillectomy on the quality of life of patients operated on at the Hospital de Clínicas, Paraguay

2021 ◽  
pp. 1-7
Author(s):  
Carlos Mena Canata ◽  
Rebeca Noemí Ruiz Vallejos
Keyword(s):  
Quality Of Life ◽  
Obstructive Sleep Apnea ◽  
Sleep Apnea ◽  
Rural Areas ◽  
Urban Areas ◽  
Obstructive Sleep ◽  
Significant Difference ◽  
Before And After ◽  
The Impact

The objective of this study is to determine the impact of adenotonsillectomy on the quality of life of postoperative patients.The study is observational, cross-sectional, and retrospective. The files of all postoperative adenotonsillectomy patients in Otorhinolaryngology Service, Hospital de Clínicas, San Lorenzo Paraguay. The Obstructive sleep apnea – 18 questionnaire (OSA 18) was applied, asking patients about symptoms before and after surgery. An effective sample of 143 postoperative patients was obtained. The average age was 6.05 ± 2.08 years, 55.10% (81) were male and 44.89% (66) were female, 65.30% (96) were from urban areas and 34.69% (51) from the rural areas. The t test was performed for means of two paired samples, comparing the results of the Obstructive sleep apnea – 18 questionnaire surveys before and after surgery which presented a significant difference (p <0.05) with a tendency to improve the quality of life after surgery. It has been shown that there is a significant difference, a considerable improvement in the quality of life of patients after adenotonsillectomy.

scholarly journals Improving the Quality of Life of Family Caregivers of People with Alzheimer’s Disease through Virtual Communities of Practice: A Quasiexperimental Study

2021 ◽  
Vol 2021 ◽  
pp. 1-10
Author(s):  
Montse Romero-Mas ◽  
Anna Ramon-Aribau ◽  
Dyego Leandro Bezerra de Souza ◽  
Andrew M. Cox ◽  
Beni Gómez-Zúñiga
Keyword(s):  
Quality Of Life ◽  
Communities Of Practice ◽  
Family Caregivers ◽  
Virtual Communities ◽  
Negative Relationship ◽  
Before And After ◽  
Ambiguous Result ◽  
Virtual Communities Of Practice ◽  
The Impact

Caring for a person with dementia burdens family caregivers, and there is a close negative relationship between this burden and their quality of life (QoL). Research suggests that caregivers’ main needs are information and training about the disease and support from others experiencing the same situation, and Internet interventions hold considerable promise for meeting these needs. Virtual communities of practice (VCoPs) are Internet frameworks to share knowledge where members collaborate and achieve a sense of trust in the community. This paper seeks to evaluate the impact of participating in a VCoP (developed through an App) on the QoL of caregivers to people with Alzheimer’s. Results show QoL before and after the intervention changed significantly. The impact of VCoP on caregivers’ overall QoL is moderated by age and relation with the person with Alzheimer’s, specifically those over 65, and spouses. VCoPs allow interaction and knowledge sharing among caregivers which provide them mainly with information and support from peers helping them to meet their needs. Furthermore, caregivers’ QoL did not decrease when their relative deteriorated functionally, which could be due to the participation in VCoP. Although we found significant pre- and post differences in caregivers’ health literacy, we must report the ambiguous result that this variable only impacts on QoL’s physical domain. Participants also reported that they had a positive experience because the App was perceived to be a useful tool, because they could manage their own participation and they met peers and felt less lonely. Results suggest that participation in a VCoP impacts positively on caregivers’ QoL.

scholarly journals Analysis of the Impact of the Confinement Resulting from COVID-19 on the Lifestyle and Psychological Wellbeing of Spanish Pregnant Women: An Internet-Based Cross-Sectional Survey

2020 ◽  
Vol 17 (16) ◽  
pp. 5933 ◽  
Author(s):  
Gemma Biviá-Roig ◽  
Valentina Lucia La Rosa ◽  
María Gómez-Tébar ◽  
Lola Serrano-Raya ◽  
Juan José Amer-Cuenca ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pregnant Women ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Eating Pattern ◽  
Before And After ◽  
Related Quality ◽  
Health Related ◽  
The Impact

(1) Background: This study aimed to analyze the impact of the confinement due to the COVID-19 pandemics on the eating, exercise, and quality-of-life habits of pregnant women. (2) Methods: This was an internet-based cross-sectional survey which collected information about adherence to the Mediterranean diet, physical exercise, health-related quality of life (HRQoL), and perceived obstacles (in terms of exercise, preparation for delivery, and medical appointments) of pregnant women before and after the confinement. The survey was conducted in 18–31 May 2020. (3) Results: A total of 90 pregnant women participated in this study. There was a significant decrease in the levels of physical activity (p < 0.01) as well as in HRQoL (p < 0.005). The number of hours spent sitting increased by 50% (p < 0.001), 52.2% were unable to attend delivery preparation sessions because these had been cancelled. However, there were no significant differences in the eating pattern of these women (p = 0.672). Conclusions: These results suggest the need to implement specific online programs to promote exercise and reduce stress, thus improving the HRQoL in this population, should similar confinements need to occur again for any reason in the future.

scholarly journals Quality of Life before and after Sleeve Gastrectomy in Lebanese Population

2019 ◽  
Vol 2019 ◽  
pp. 1-6
Author(s):  
Marwan Alkassis ◽  
Fady Gh Haddad ◽  
Joseph Gharios ◽  
Roger Noun ◽  
Ghassan Chakhtoura
Keyword(s):  
Quality Of Life ◽  
Bariatric Surgery ◽  
Weight Loss ◽  
Sleeve Gastrectomy ◽  
Sexual Pleasure ◽  
Life Questionnaire ◽  
Before And After ◽  
The Mean ◽  
The Impact

Introduction. Obesity is increasing worldwide and in Lebanon with a negative impact on the quality of life. The primary objective of this study is to measure the quality of life in obese subjects before and after bariatric surgery, depending on age, sex, and degree of weight loss. A secondary objective is to determine the impact of bariatric surgery on comorbidities associated with obesity. Materials and methods. Patients undergoing laparoscopic sleeve gastrectomy for BMI ≥ 30 kg/m2 between August 2016 and April 2017 were included. Participants completed the Moorehead-Ardelt Quality of Life Questionnaire II (MA II) prior to operation and one year after. Statistical analysis was carried out using SPSS statistics version 20.0. Results. 75 patients participated in the study. The majority were women (75%), and the mean age was 36.3 years. The mean weight loss was 36.57 kg (16–76). Initially, the total MA II score was −0.33 ± 0.93. Postoperatively, it increased to 1.68 ± 0.62 (p≤0.001). All MA II parameters improved after surgery (p≤0.001), but this improvement was independent of age and sex. Improvement in self-esteem, physical activity, work performance, and sexual pleasure was influenced by the degree of weight loss (p≤0.001). All comorbidities associated with obesity regressed significantly after sleeve gastrectomy (p<0.05) with the exception of gastroesophageal reflux and varicose veins of the lower limbs. Conclusion. Sleeve gastrectomy improves quality of life and allows reduction of comorbidities.

scholarly journals Impact of a structured, group-based running programme on clinical, cognitive and social function in youth and adults with complex mood disorders: a 12-week pilot study

2019 ◽  
Vol 5 (1) ◽  
pp. e000521
Author(s):  
Laura E Keating ◽  
Suzanna Becker ◽  
Katie McCabe ◽  
Jeff Whattam ◽  
Laura Garrick ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mood Disorders ◽  
Exercise Intervention ◽  
Bodily Pain ◽  
Cognitive Outcomes ◽  
Open Label ◽  
Mood Symptoms ◽  
Before And After ◽  
The Impact

BackgroundIndividuals with mood disorders often report lingering health-related quality of life (HRQOL) and social and cognitive impairments even after mood symptoms have improved. Exercise programmes improve mood symptoms in patients, but whether exercise improves functional outcomes in patients with difficult-to-treat mood disorders remains unknown.DesignWe evaluated the impact of a 12-week structured running programme on cognitive, social and quality-of-life outcomes in participants with difficult-to-treat mood disorders.MethodsIn a prospective, open-label study, patients referred to the St Joseph’s Healthcare HamiltonTeam Unbreakablerunning programme for youth and adults with mood disorders completed a comprehensive assessment battery before and after the 12-week exercise intervention.ResultsWe collected preintervention and postintervention data from 18 participants who improved on the general health, vitality, role of emotions, social functioning and mental health (all p≤0.01) HRQOL subscales. Performance improved on cognitive tests that assessed working memory and processing speed (p≤0.04); there were no improvements in complex executive functioning tasks. Regression analyses indicated that younger age, shorter illness duration and reduced bodily pain predicted social and cognitive outcomes.ConclusionParticipation in a group-based, structured running programme was associated with improved HRQOL and social and cognitive function.

The impact of compression garments on the quality of life in patients with chronic venous disease

Physiotherapy ◽  
2017 ◽  
Vol 24 (2) ◽  
Author(s):  
Iwona Demczyszak ◽  
Edyta Sutkowska ◽  
Magdalena Jasiak ◽  
Małgorzata Fortuna ◽  
Justyna Mazurek
Keyword(s):  
Quality Of Life ◽  
Lower Extremity ◽  
Compression Therapy ◽  
Chronic Venous Disease ◽  
Venous Disease ◽  
Compression Garments ◽  
Before And After ◽  
The Impact ◽  
Career Status

AbstractIntroduction. Assessment of quality of life in patients suffering from chronic venous disease of the lower extremity who were treated with compression garments. Methods. Patients of both sexes aged 30-75 years with chronic venous disease and at least varices, but without active ulceration, were qualified for the study. To assess the quality of life, the CIVIQ-20 questionnaire was used before and after 4 weeks of compression therapy with second class compression. Results. The combined results of the CIVIQ scale rose from 61.49% before compression to 75.17% after 4 weeks of compression therapy (p 0.01). No correlation was found between sex, age, career status or type of work and the averaged CIVIQ score. Conclusions. Compression therapy with special garments significantly improves the quality of life in patients with chronic venous disease. Larger studies are still needed in this field.

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