scholarly journals Evaluation of the quality of life and sociodemographic features of patients with muscular dystrophies

Author(s):  
Askeri Turken

Objective: Muscular dystrophies refers to a group of primary inherited myopathies that exhibit a chronic and unremitting progressive course. Quality of life is a concept, which mainly reflects individual responses given by a person to the physical, psychological, social and environmental impacts of the disease. In this study we aimed to evaluate quality of life and sociodemographic features of 146 patients who presented to the physical therapy and rehabilitation neuromuscular diseases outpatient clinic of our hospital. Methods: Patients’ sociodemographic data including gender, marital status and educational level were recorded and analyzed. WHOQOL-BREF survey was performed in order to determine quality of life in patients with muscular dystrophy. The scores obtained from the survey were transformed into WHOQOL 4-20 and WHOQOL 0-100 score ranges, and relationships between the sociodemographic data of the patients and WHOQOL-BRIEF survey results were evaluated. Results: Eighty-five (58.2%) patients were male and 61 (41.8%) were female. No statistically significant difference was found between the male and female MD patients in terms of the physical, psychological, social relationships and environmental domains of WHOQOL-BREF scale (for all p>0.05). No significant difference was found between single, married, divorced and widowed patients (for all p>0.05). There were significant differences between educational levels of the patients in terms of the mean WHOQOL-BREF scores (p<0.05). The mean scores increased as educational levels increased. Conclusion: Quality of life increases with the levels of education and does not differ according to gender and marital status in patients with muscular dystrophy. Patients with muscular dystrophy should be encouraged for education from the pediatric period.

Author(s):  
Susisusanti Daely ◽  
Tuti Nuraini ◽  
Dewi Gayatri ◽  
Hening Pujasari

Background: Living a life of good quality is important for everyone. This research aimed to get an overview of the quality of life (QOL) of the elderly in an elderly social institution in Jakarta, Indonesia.Design and Methods: This descriptive study with a cross-sectional design included 107 participants using simple random sampling technique. Data were collected using an abbreviated World Health Organization Quality of Life (WHOQOL-BREF) and analyzed using statistical software, Mann Whitney and Kruskal Wallis test.Results: The mean quality of life of the elderly’s was 66.09 (scale: 0–100), with a mean QOL of 67.58 in the physical domain, 66.26 in the psychological domain, 64.64 in the social relationships domain, and 65.88 in the environment domain. Regarding age and marital status, there was a significant difference in the mean QOL of the elderly living in the elderly social institution (p = .017 and .001). In contrast, there was no significant difference in their mean QOL in terms of gender, level of education, and length of stay (p = .323, .164, and .697).Conclusion: The low quality of life of the elderly is our concern. The staff in the elderly social institution could develop some activities for the elderly to increase the elderly’s QOL, such as making daily activities plans and the evaluation of those activities.  


Nutrients ◽  
2021 ◽  
Vol 13 (3) ◽  
pp. 998
Author(s):  
Rosario Licitra ◽  
Maria Marchese ◽  
Letizia Brogi ◽  
Baldassare Fronte ◽  
Letizia Pitto ◽  
...  

Duchenne muscular dystrophy (DMD), caused by mutations in the dystrophin gene, is an inherited neuromuscular disorder that causes loss of muscle mass and motor skills. In the era of genomic medicine, there is still no known cure for DMD. In clinical practice, there is a growing awareness of the possible importance of nutrition in neuromuscular diseases. This is mostly the result of patients’ or caregivers’ empirical reports of how active substances derived from food have led to improved muscle strength and, thus, better quality of life. In this report, we investigate several nutraceutical principles in the sapje strain of zebrafish, a validated model of DMD, in order to identify possible natural products that, if supplemented in the diet, might improve the quality of life of DMD patients. Gingerol, a constituent of fresh ginger, statistically increased the locomotion of mutant larvae and upregulated the expression of heme oxygenase 1, a target gene for therapy aimed at improving dystrophic symptoms. Although three other compounds showed a partial positive effect on locomotor and muscle structure phenotypes, our nutraceutical screening study lent preliminary support to the efficacy and safety only of gingerol. Gingerol could easily be proposed as a dietary supplement in DMD.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Tilahun Fufa Debela ◽  
Zerihun Asefa Hordofa ◽  
Aster Berhe Aregawi ◽  
Demisew Amenu Sori

Abstract Background The consequences of obstetric fistula on affected women are more than the medical condition. It has extensive physical, psychological, social, and economic consequences on them. Obstetric fistula affects the entire health and entire life of women. Women suffering from obstetric fistula are often abandoned by her partner, relatives, and the community. This study aimed to determine the quality of life of obstetrics fistula patients before and after surgical repair. Methods Institutional-based prospective, before and after study design was conducted in the Jimma University Medical Center from November 1, 2019–October 30, 2020. A face-to-face interview was conducted with fistula patients who visited Jimma University Medical center, fistula clinic during the study period. All fistula patients were included in the study. Accordingly, 78 women who underwent surgical repair were interviewed. The means and the standard deviation were computed using conventional statistics formulas. The unpaired t-test was used to compare two independent means, and one-way analysis of variance (ANOVA) was used to compare the quality of life before repair and after a successful repair. Linear regression analysis was done for identifying determinants of quality of life. A P value of 0.05 will be considered statistical significance. Result The overall quality of life of women was 58.17 ± 7.2 before the surgical repair and 71.20 ± 10.79 after surgical repair. The result indicates there is a significant difference in the mean value of pre and post-operative (P < 0.001). The overall satisfaction of women with their health status before the surgical repair was 22.5 ± 1.30and it has increased to 53.0 ± .90after surgical repair. The physical health dimension score was 16.51 ± 5.27 before the surgical repair while it has increased to 21.77 ± 5.38 after the surgical repair. The score of the social domain before the surgical repair was 5.19 ± 1.34 and it has increased to 7.13 ± 3.67 after the surgical repair. The score of the environmental health domain was 17.41 ± 2.89 before the surgery while it also increased to 21.65 ± 4.04 after the surgical repair. The results have shown there was a significant difference in the mean values of pre and post-operatives in both social and environmental scores (P < 0.001). The score of the psychological health domain before the surgery was 19.06 ± 1.46 and it was increased to 19.84 ± 3.21 after the surgical repair. The result showed there is a significant difference in mean value pre and post-operative (P = 0.048), though it is a slight improvement compared to other domains. Conclusion The overall quality of life of the patient with fistula was improved after successful surgical repair. Although all domains of quality of life had shown significant improvement after successful surgical repair, the psychological domain showed slight improvement.


2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
Julia Colombijn ◽  
Anna Bonenkamp ◽  
Anita Van Eck van der Sluijs ◽  
Alferso C Abrahams ◽  
Joost Bijlsma ◽  
...  

Abstract Background and Aims Dialysis patients are often prescribed a large number of medications to improve metabolic control and manage co-existing comorbidities. However, several studies suggest that a large number of medications can also detrimentally affect their health-related quality of life (HRQoL). Therefore, this study aims to provide insight in the association between the number of medications and various aspects of HRQoL in dialysis patients. Method A multicentre study was conducted among dialysis patients from Dutch dialysis centres three months after initiation of dialysis as part of the ongoing prospective DOMESTICO study. The number of medications, defined as the number of concomitantly prescribed types of drugs, was obtained from electronic patient records. Primary outcome was HRQoL measured with the Physical Component Summary (PCS) score and Mental Component Summary (MCS) score (range 0-100) of the Short Form 12. Secondary outcomes were number of symptoms (range 0-30) measured with the Dialysis Symptoms Index and self-rated health (range 0-100) measured with the visual analogue scale of the EuroQol-5D-5L. Data were analysed using linear regression and adjusted for possible confounders, including age, sex, dialysis modality, and comorbidity. Analyses for MCS and number of symptoms were performed after categorising patients in tertiles according to their number of medications because assumptions of linearity were violated for these outcomes. Results A total of 162 patients were included. Mean age of patients was 58 ± 17 years, 35% were female, and 80% underwent haemodialysis. The mean number of medications was 12.2 ± 4.5. Mean PCS and MCS were 36.6 ± 10.2 and 46.8 ± 10.0, respectively. The mean number of symptoms was 12.3 ± 6.9 and mean self-rated health 60.1 ± 20.6. In adjusted analyses, PCS was 0.6 point lower for each additional medication (95%CI -0.9 – -0.2; p=0.002). MCS was 4.9 point lower (95%CI -8.8 – -1.0; p=0.01) and 1.0 point lower (95%CI -5.1 – 3.1; p=0.63) for the highest and middle tertiles of medications, respectively, compared to the lowest tertile. Patients in the highest tertile of medications reported 4.1 more symptoms compared to the lowest tertile (95%CI 1.5 – 6.6; p=0.002) but no significant difference in the number of symptoms was observed between the middle and lowest tertile. Self-rated health was 1.5 point lower for each medication (95%CI -2.2 – -0.7; p&lt;0.001). Conclusion After adjustment for comorbidity and other confounders, a higher number of medications was associated with a lower PCS, MCS, and self-rated health in dialysis patients and with more symptoms. This suggests that it may be relevant to weigh expected therapeutic benefits of medication against their possible harmful effects on HRQoL. An unfavourable balance between expected benefits and impact on HRQoL might be ground to deviate from clinical guidelines, especially for patients with a limited life-expectancy and for whom a kidney transplant is unattainable.


2020 ◽  
Vol In Press (In Press) ◽  
Author(s):  
Mahnaz Zarshenas ◽  
Mozhgan Sorkhenezhad ◽  
Marzieh Akbarzadeh

Background: Uterine leiomyomas are considered as a major source of complications and the most common cause of hysterectomy. Objectives: The aim of this study was to compare the quality of life in women with and without uterine leiomyoma referred to gynecology clinics of Shiraz University of Medical Sciences in 2018. Methods: In this cross-sectional study, a total of 126 patients who referred to the clinics of Shiraz University of Medical Sciences were selected and divided into equal groups according to uterine leiomyoma, 1 - 7 cm uterine leiomyoma group and non-uterine leiomyoma group by convenience sampling. The World Health Organization Quality of Life and Healthy Lifestyle questionnaires were used for data collection. Independent t-test was used to analyze the data. Results: The mean quality of life of women with uterine leiomyoma was 47.20 ± 12.41 and women without uterine leiomyoma had a significant difference (51.11 ± 11.23, t = 3.93, P = 0.041). The mean lifestyle of women with uterine leiomyoma was 114.18 ± 25.48 and women without uterine leiomyoma had 149.11 ± 23.81 (t = 4.01, P = 0.029). Conclusions: The mean score of quality of life and lifestyle were significantly different in women with and without uterine leiomyoma. Therefore, it is necessary to improve the quality of life of women by improving their lifestyle and providing psychological counseling.


2021 ◽  
Vol 8 (4) ◽  
pp. 492-500
Author(s):  
Manish Kumar Singh ◽  
Pragya Verma ◽  
Sarita Singh ◽  
Gyan P Singh ◽  
Hemlata Verma

Patients suffering from advanced upper abdominal malignancies have pain as predominant symptom affects their quality of life and survival. USG guided coeliac plexus neurolysis become benevolence in these patients on part of their pain management and quality of life improvement. To compare the efficacy of USG guided coeliac plexus neurolysis for pain relief in upper abdominal malignancies by using different concentration of alcohol (50% vs 75%).This Prospective, comparative, randomised double blinded study was conducted during Sep 2019 – Aug 2020 at our tertiary care centre. Total 60 cases were taken as per following inclusion and exclusion criteria and randomly divided into 2 groups i.e. 30 each group, we compare Visual Analogue Scale (VAS) score, quality of life (QOL) and need of rescue analgesia profile between the groups to know the efficacy of USG guided coeliac plexus block. In our study, we observed that the baseline mean VAS score in group I was 8.26±0.78 while in group II was 8.03±0.76. No significant difference was found in mean VAS score at this time between the groups (p=0.24). The baseline mean QOL score in group-I was 77.46±3.40 while for the cases of group II the mean QOL score was 77.36±3.33. No significant difference was found in mean QOL score at baseline between the groups (p=0.90). The baseline mean morphine consumption in group-I was 113.33±39.24 mg while for the cases of group-II the mean morphine consumption was 120.33±38.37mg. No significant difference was found in mean morphine consumption at this time between the groups (p=0.48).Both groups having 50% alcohol and 75% alcohol decreases the VAS score from baseline in patients having upper abdominal malignancies along with QOL and dosages of rescue analgesia whereas no significant difference in VAS score in patients of both groups.


2013 ◽  
Vol 18 (5) ◽  
pp. 237-242 ◽  
Author(s):  
Ricardo N Angeles ◽  
Dale Guenter ◽  
Lisa McCarthy ◽  
Martha Bauer ◽  
Miriam Wolfson ◽  
...  

BACKGROUND: Approximately 18.9% of Canadians live with chronic pain. Primary care reform in Ontario presents unique opportunities to assess approaches to help these patients.OBJECTIVE: To assess the feasibility of an interprofessional primary care-based program for patients living with chronic pain, and to examine the potential impact of such a program on quality of life and health resource utilization.METHODS: >An embedded mixed-methods evaluation (randomized controlled trial with waiting list control and semistructured interviews) of an eight-week series of small group sessions exploring multifactoral aspects of pain management was performed. Participants were randomly assigned to early intervention (EI) or delayed intervention (DI) groups. All participants received the intervention; the DI group served as a control group for comparison with the EI group. Outcomes included the Short Form-36 Health Survey version 2 (SF-36v2), medication use and health care utilization. Qualitative interviews were conducted to identify areas for program improvement.RESULTS: A total of 240 patients were recruited and 63 agreed to participate. The mean (± SD) age of the participants was 55±14.1 years and 62.3% were female. There was no significant difference in the mean change in SF-36v2 summary scores between the EI and DI groups. However, the SF-36v2 subscale score for bodily pain was significantly improved in the EI group compared with the DI group after six months of observation (mean difference = 13.1 points; P<0.05). There was also significant improvement in this score when both groups were pooled and aggregate preintervention and postintervention scores were compared. There was a significant decrease in the mean number of clinic visits in the six-month period following the intervention compared with the six-month period before the intervention (P=0.043).CONCLUSION: An interprofessional program in primary care for patients living with chronic pain may lead to improvements in quality of life and health resource utilization. The challenges to the feasibility of the program and its evaluation are recruitment and retention of patients, leading to the conclusion that the program, as it was conducted in the present study, is not appropriate for this setting.


2021 ◽  
Author(s):  
Sadeel Shanshal ◽  
Harith Kh. Al-Qazaz

Abstract Background: COVID-19 pandemic has negatively affected the entire world and one of its impacts was the increased level of stress and anxiety, especially among healthcare workers. Therefore, this study aims at evaluating the quality of life (QoL) and sleep quality of healthcare professionals in Iraq.Methods: This study assessed the QoL and sleep quality by using World Health Organization Quality of Life Instruments (WHOQOL-BREF) and the Insomnia Severity Index (ISI) respectively. The questionnaires were administered through an online cross-sectional survey targeted at workers in medical fields in Iraq from 1st to 20th of August 2021. Results: Three hundred medical health workers participated, and females constituted 75.3%. The two questionnaires had very good internal consistency. The highest scoring domain was the social relationships, followed by physical health. Significant difference was found in the mean scores of psychological health domain between males and females, with higher scores observed in males. The mean of the total ISI score was 11.58 ± 6.88 with a range between 0 and 27. Severe insomnia was observed in only 9.7% of the participants. A significant negative correlation (r = -0.118) was found between age and ISI scores of the participants. Significant differences were found between males and females with higher ISI mean score observed among males. Conclusion: The quality of life and sleep pattern can be impacted by COVID-19 infection with the psychological aspect of QoL being the most affected and some degrees of insomnia being observed in many participants.


2022 ◽  
Vol 22 (1) ◽  
Author(s):  
Zahra Akbari Namvar ◽  
Reza Mahdavi ◽  
Masood Shirmohammadi ◽  
Zeinab Nikniaz

Abstract Background In this trial, we investigated the effect of a group-based education program on gastrointestinal (GI) symptoms and quality of life (QOL) in patients with celiac disease (CD). Method In the present study, 130 patients with CD who were on a GFD for at least 3 months, randomly assigned to receive group-based education (n = 66) or routine education in the celiac clinic (n = 64) for 3 months. We assessed gastrointestinal symptoms and quality of life using the gastrointestinal symptom rating scale (GSRS) questionnaire and SF-36 questionnaire at baseline and 3 months after interventions. Results The mean age of the participants was 37.57 ± 9.59 years. There were no significant differences between the two groups regarding the baseline values. Results showed that the mean score of total GSRS score in the intervention group was significantly lower compared with the control group 3 months post-intervention (p = 0.04). Also, there was a significant difference in the mean score of SF-36 between the two groups 3 months post-intervention (p = 0.02). Conclusion Results showed that group-based education was an effective intervention in patients with celiac disease to improve gastrointestinal symptoms and quality of life. Trial registration IRCT code: IRCT20080904001197N21; registration date: 5/23/2019.


2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Umaru Muhammad Badaru ◽  
O O Ogwumike ◽  
A Fatai Adeniyi ◽  
A I Naziru

Background: Caregivers have intimate knowledge of their children and can provide reliable information on their quality of life (QoL). Objective: This study assessed the factors that could influence caregiver report of QoL of children with Cerebral Palsy.Methods: The cross-sectional survey recruited 30 caregivers and children diagnosed with CP using purposive sampling technique. QoL was assessed with CP-QoL questionnaire, depression with Patient Health Questionnaire (PHQ-9) and functional level with Gross Motor Function Classification System (GMFCS). Socio-demographic data and perceived stress were assessed with a pro-forma. The data were summarised with descriptive statistics and analysed with Spearman Rank Order correlation at alpha level of 0.05. Results: The mean age of caregivers and that of children with CP were 34.40 ± 7.02 years and 7.23 ± 2.08 years respectively. The mean QoL score was 60.06±4.27. The ‘social well-being and acceptance’ (75.07 ± 9.52) and ‘Access to services’ (66.65±7.87) domains have the highest mean scores. Marital status has significant relationship with proxy report of children’s overall QoL (Rho=0.40; P<0.05) and caregiver depression (Rho=-0.414; P<0.05). Conclusion: Children with CP in Kano City have moderate QoL. Proxy report of overall QoL was significantly related to marital status with married caregivers’ more likely to report better QoL. Child’s functional status, caregivers’ age and their level of income have also influenced the proxy report of some QoL domains. Researchers should always endeavor to compare parents’ and children’s reports in order to obtain a more accurate measure of children’s QoL.


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