scholarly journals Health-Related Quality of Life Among Children With Transfusion-Dependent Thalassemia: A Cross-Sectional Study in Malaysia

2020 ◽  
Author(s):  
Asrul Akmal Shafie ◽  
Irwinder Kaur Chhabra ◽  
Jacqueline Wong Hui Yi ◽  
Noor Syahireen Mohammed ◽  
Hishamshah Mohd Ibrahim ◽  
...  

Abstract Background: The treatment of children with transfusion-dependent thalassemia (TDT) in Malaysia has progressed since 2005. This study provides an updated health-related quality of life (HRQoL) assessment for children with the disorder and the factors affecting the HRQoL.Methods: A cross-sectional HRQoL survey of Malaysian children with TDT was conducted using the PedsQL™ 4.0 Generic Core Scales. Patients with non-transfusion dependent thalassemia and other haemoglobinopathies were excluded. Parent-proxy and self-reported HRQoL scores were obtained using a multi-stage convenient sampling. The relationship between HRQoL scores and demographic factors were tested using association, correlation and regression analysis. Results: A total of 368 patients were recruited. The mean (SD) Total Summary Score (TSS) was 80.12(13.87). Predictors for a lower TSS was an increasing age group and the use of dual chelating agents (R2 = 0.057, F (4, 359) = 5.40, p = <0.001). The mean (SD) Physical Health Summary Score (PHSS) was 82.21 (16.82). Predictors of a higher PHSS score was being male, while predictors of a lower score was an increasing age group and parent-proxy reports(R2 = 0.075, F (5,358) = 5.80, p = <0.001). The mean (SD) Psychosocial Health Summary Score (PCHS) was 79.39 (14.81). Predictors for a lower PCHS was the use of dual chelating agents(R2 = 0.041, F (1, 362) = 15.60, p = <0.001). The school functioning score had the lowest mean (SD) score of 69.52(20.92) in the psychosocial dimension.Conclusion: The HRQoL of TDT children in Malaysia has improved over the last decade owing to the better access in treatment. However, further effort is needed to improve the school functioning dimension.

2020 ◽  
Author(s):  
Asrul Akmal Shafie ◽  
Irwinder Kaur Chhabra ◽  
Jacqueline Wong Hui Yi ◽  
Noor Syahireen Mohammed ◽  
Hishamshah Mohd Ibrahim ◽  
...  

Abstract Background The treatment of children with transfusion-dependent thalassemia (TDT) in Malaysia has progressed since 2005. This study provides an updated health-related quality of life (HRQoL) assessment for children with the disorder and the factors affecting the HRQoL. Methods A cross-sectional HRQoL survey of Malaysian children with TDT was conducted using the PedsQL™ 4.0 Generic Core Scales. Patients with non-transfusion dependent thalassemia and other haemoglobinopathies were excluded. Parent-proxy and self-reported HRQoL scores were obtained using a multi-stage convenient sampling. The relationship between HRQoL scores and demographic factors were tested using association, correlation and regression analysis. Results A total of 368 patients were recruited. The mean (SD) Total Summary Score (TSS) was 80.12(13.87). Predictors for a lower TSS was an increasing age group and the use of dual chelating agents (R2 = 0.057, F (4, 359) = 5.40, p = <0.001). The mean (SD) Physical Health Summary Score (PHSS) was 82.21 (16.82). Predictors of a higher PHSS score was being male, while predictors of a lower score was an increasing age group and parent-proxy reports(R2 = 0.075, F (5,358) = 5.80, p = <0.001). The mean (SD) Psychosocial Health Summary Score (PCHS) was 79.39 (14.81). Predictors for a lower PCHS was the use of dual chelating agents(R2 = 0.041, F (1, 362) = 15.60, p = <0.001). The school functioning score had the lowest mean (SD) score of 69.52(20.92) in the psychosocial dimension. Conclusion The HRQoL of TDT children in Malaysia has improved over the last decade owing to the better access in treatment. However, further effort is needed to improve the school functioning dimension.


2020 ◽  
Author(s):  
Asrul Akmal Shafie ◽  
Irwinder Kaur Chhabra ◽  
Jacqueline Wong Hui Yi ◽  
Noor Syahireen Mohammed ◽  
Hishamshah Mohd Ibrahim ◽  
...  

Abstract Background The treatment of children with transfusion-dependent thalassemia (TDT) in Malaysia has progressed since 2005. This study provides an updated health-related quality of life (HRQoL) assessment for children with the disorder and the factors affecting the HRQoL.Methods A cross-sectional HRQoL survey of Malaysian children with TDT was conducted using the PedsQL™ 4.0 Generic Core Scales. Patients with non-transfusion dependent thalassemia and other haemoglobinopathies were excluded. Parent-proxy and self-reported HRQoL scores were obtained using a multi-stage convenient sampling. The relationship between HRQoL scores and demographic factors were tested using association, correlation and regression analysis.Results A total of 368 patients were recruited. The mean (SD) Total Summary Score (TSS) was 80.12(13.87) with increasing age and use of dual chelating agents being predictors for a lower score (R 2 = 0.057, F (4, 359) = 5.40, p = <0.001). The mean (SD) Physical Health Summary Score (PHSS) was 82.21 (16.82). Predictors of a higher PHSS score was being male, while increasing age and parent-proxy reports were predictors of a lower score (R 2 = 0.067, F (3,360) = 8.57, p = <0.001). The mean (SD) Psychosocial Health Summary Score (PCHS) was 79.39 (14.81), with the use of dual chelating agents being predictors for a lower score (R 2 = 0.041, F (1, 362) = 15.60, p = <0.001). The school functioning score had the lowest mean (SD) score of 69.52(20.92) in the psychosocial dimension.Conclusion The HRQoL of TDT children in Malaysia has improved over the last decade owing to the better access in treatment. However, further effort is needed to improve the school functioning dimension.


2005 ◽  
Vol 114 (7) ◽  
pp. 499-503 ◽  
Author(s):  
Jonathan P. Lindman ◽  
Linda S. Lewis ◽  
Neil Accortt ◽  
Brian J. Wiatrak

Objectives: The objective of this study was to use the Pediatric Quality of Life Inventory (PedsQL), a 23-question modular instrument designed to measure the health-related quality of life (HRQOL) in children and adolescents, to compare the HRQOL in children with recurrent respiratory papillomatosis (RRP) with the HRQOLs reported for healthy children and children with other chronic medical conditions. Methods: The PedsQL version 4.0 Generic Core Scales consist of 23 questions in 4 subscales (Physical, Emotional, Social, and School Functioning) for parent-proxy reporting on the HRQOL in children ages 2 to 4 years, parent reporting for children 5 to 18 years, and child self-reporting for ages 5 to 7 years (age-adjusted questions and rating scales) and 8 to 18 years. The questionnaires were administered in person or by telephone to 22 children with RRP and (or, for children 2 to 4 years of age) one parent recruited from a tertiary pediatric otolaryngology practice. The results were compared with validated norms for healthy children and scores for children whose parents reported a chronic medical condition. Results: Compared with healthy controls, the children 5 to 18 years of age with RRP self-reported a significantly (p < .05) worse HRQOL as measured by the PedsQL Total Score, Psychosocial Health score (a combination of Emotional, Social, and School Functioning Scores), and Social Functioning and School Functioning scores. Self-reported scores for the children 5 to 18 years of age with RRP compared with children with other chronic illnesses followed the same trend, and the difference approached statistical significance (p = .05) for the School Functioning Subscale scores. The parent-proxy report (for children 2 to 18 years of age) scores for children with RRP were significantly lower (p < .0001) on every scale and in total compared with scores for healthy children. Compared with scores of children with other chronic medical conditions, the parent-proxy report scores were significantly lower for psychosocial health (p = .005) and school functioning (p<.0001). Conclusions: Children with RRP report a lower quality of life than do those who are healthy, and a quality of life similar to that of those who have other chronic medical problems. The parent reports also reflect a lower quality of life for children affected by this disease, as compared with healthy children. The PedsQL demonstrated a statistically significant low HRQOL in children with RRP; however, the clinical implications of this finding appear trivial. A distinct, disease-specific survey for RRP, if developed, would have enhanced responsiveness and sensitivity to change (due to the natural course of the disease and/or surgical treatments).


2015 ◽  
Vol 16 (6) ◽  
pp. 621-625 ◽  
Author(s):  
Anja Kutscher ◽  
Ulf Nestler ◽  
Matthias K. Bernhard ◽  
Andreas Merkenschlager ◽  
Ulrich Thome ◽  
...  

OBJECT Congenital hydrocephalus has a major impact on the lives of patients and their relatives, as well as their long-term neurological development and social integration. The aim of this study was to assess the self-reported health-related quality of life (HRQOL) of patients after reaching adulthood. METHODS A total of 31 patients who required CSF shunt treatment for congenital hydrocephalus within the 1st year of life (between 1963 and 1987) agreed to undergo a structured SF-36 self-assessment. An age-matched German standard cohort was used as control. Additional parameters of surgical, social, and global neurological outcome were analyzed. The mean patient age was 35 years (range 26–51 years, 13 females and 18 males). Hydrocephalus etiologies were posthemorrhagic hydrocephalus (n = 9), postinfectious hydrocephalus (n = 5), aqueductal stenosis (n = 10), myelomeningocele (n = 2), and unknown cause (n = 5). RESULTS The mean modified Rankin Scale score was 1.6 (range 0–4). Hydrocephalic patients achieved lower scores for the SF-36 items physical functioning (70.5 vs 93.5, p < 0.05), physical role functioning (74.2 vs 88.3, p < 0.05), and general health perceptions (64.5 vs 72.3, p < 0.05). Emotional, social role functioning, and mental health items did not differ between the groups. Assessment of vitality and pain resulted in a trend to worse values. Whereas the Physical Component Summary score was lower (46.1 vs 54.3, p < 0.05), the Mental Component Summary score was not significantly different (50.2 vs 48.7, p = 0.3). There was neither a statistically significant difference between subgroups of different etiologies nor an association with the number of subsequent hydrocephalus-related surgeries. CONCLUSIONS Adult HRQOL for patients with congenital hydrocephalus appears to be similar to that for healthy con with regard to mental health and social functioning aspects. Physical impairment is a predominant factor of compro quality of life.


2021 ◽  
Vol 2021 ◽  
pp. 1-8
Author(s):  
Hassan Joulaei ◽  
Seyed Ghaleb Mousavi ◽  
Zohre Foroozanfar ◽  
Tayebeh Rakhshani

Health-related quality of life (HRQoL) is one of the most important indicators in assessing the health and well-being of HIV-positive patients. The present study investigated the HRQoL of HIV patients referred to Abadan’s Voluntary Counseling and Testing (VCT) center in 2019. In this cross-sectional study, a total of 134 HIV+ patients referred to Abadan’s VCT center were selected through convenience sampling. Demographic information was collected through a researcher-made checklist; the patients’ status and health information were collected through electronic medical records of HIV+ patients and their records at the VCT center. The HRQoL index was assessed using the World Health Organization (WHOQOL-BREF) questionnaire. Data analysis was carried out using simple and multiple linear regression as well as a t -test in SPSS software. A P value < 0.05 was considered as the significance level in all tests. The mean of the HRQoL in all the participating patients was 56.42 ± 22.66 . The highest and lowest mean scores of HRQoL domains were related to social relationships ( 57.53 ± 24.73 ) and environmental health ( 53.68 ± 19.07 ). There was a positive significant relationship between the marital status, residency, years of education, duration of infection, transmission route, and antiretroviral (ARV) therapy with the score of the HRQoL. The results showed a moderate score for the mean HRQoL and its domains. The present study revealed the necessity of improving HIV+ patients’ living conditions, employment status, health education, and mental health care.


2021 ◽  
Author(s):  
Eunji Kwon ◽  
Jeongok Park ◽  
Sue Kim ◽  
Kyung Hee Lee

Abstract Background: Health-related quality of life (HRQOL) is an important concept to consider both individuals' ability to manage their daily lives and health status across the lifespan. Despite this variable's importance, there is a lack of clarification on the factors associated with HRQOL, especially for military women. The aim of this study was to examine factors associated with HRQOL of military women in the Korea Army.Methods: This cross-sectional study included 196 participants who were currently within their 5-year service period. Differences in HRQOL according to general and occupational factors were analyzed using the independent t-test and analysis of variance. Multiple linear regression analysis was performed to identify factors associated with the HRQOL of women serving as military junior officers.Results: The mean score for the physical component summary (PCS) of HRQOL was 56.0±5.8, and that for the mental component summary (MCS) of HRQOL was 47.2±10.0. For depression, the mean score was 5.4±5.2, whereas 19.4% of the participants scored more than 10 out of 27 points, which means moderate to severe. No variables showed statistically significant relationships with the PCS. However, significant relationships with the MCS were found for rank (β = -3.63, p <. 001), duty time (β = -4.93, p = .029), perceived stress (β = -0.61, p <. 001), and depression (β = -0.90, p <. 001).Conclusions: Although depression levels were not severe, it was a significant factor of HRQOL and thus the need for depression screening and regular depression management in women serving in the ROK Army to improve their HRQOL. Considering these results, nursing officers should conduct frequent testing related to mental health and take steps to manage high-risk groups. This study also contributes to the literature by providing basic data for the establishment of an appropriate health service environment and systematic health management policies.


2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Sara Jalali-Farahani ◽  
Parisa Amiri ◽  
Hanieh Fakhredin ◽  
Kiana Torshizi ◽  
Leila Cheraghi ◽  
...  

Abstract Background Cardiovascular diseases (CVDs) are among the most common causes of death worldwide, including in Iran. Considering the adverse effects of CVDs on physical and psychosocial health; this study aims to investigate the association between experience of CVDs and health-related quality of life (HRQoL) in adult participants of the Tehran Lipid and Glucose Study (TLGS). Methods The participants of this cross-sectional study were 7009 adults (≥ 20 years) who participated in the TLGS during 2014–2017. Demographic information and HRQoL data was collected through validated questionnaires by trained interviewers. HRQoL was assessed by the Iranian version of the SF-12 questionnaire. Data was analyzed using the SPSS software. Results The mean age of participants was 46.8 ± 14.6 years and 46.1% of them were men. A total of 9.0% of men and 4.4% of women had CVDs. In men, the mean physical HRQoL summary score was significantly lower in those with CVDs compared to those without CVDs (46.6 ± 0.8 vs. 48.5 ± 0.7, p > 0.001). In women, the mean mental HRQoL summary scores was significantly lower in those with CVDs compared to those without CVDs (42.8 ± 1.0 vs. 45.2 ± 0.5, p = 0.009). In adjusted models, men with CVDs were more likely to report poor physical HRQoL compared to men without CVDs (OR(95%CI): 1.93(1.32–2.84), p = 0.001); whereas for women, the chance of reporting poor mental HRQoL was 68% higher in those with CVDs than those without CVDs (OR(95%CI): 1.68(1.11–2.54), p = 0.015). Conclusion The findings of the current study indicate poorer HRQoL in those who experienced CVDs compared to their healthy counterparts with a sex specific pattern. While for men, CVDs were associated with more significant impairment in the physical dimension of HRQoL, women experienced a similar impairment in the mental dimension of HRQoL.


2017 ◽  
pp. 12-18 ◽  
Author(s):  
Darío Fernando Gaitán López ◽  
Jorge Enrique Correa Bautista ◽  
Stefano Vinaccia ◽  
Robinson Ramírez Vélez

Objective: To describe by self-report the HRQoL among schoolchildren from Bogotá, Colombia belonging to the FUPRECOL study. Methods: A cross-sectional study in 3,245 children and 3,354 adolescents, between 9 and 17.9 years old, participated in the study. Spanish version of the EQ-5D-Y was self-assessment. Percentages of missing values and reported problems were calculated. The data was analyzed by measurement of central tendency stratified by age group, and to compare them to international references. Results: A total of 58.3%, (n= 3,848) were women. In all ages, the HRQoL was higher in boys than in girls. To compare by sex, the dimensions of the EQ-5D-Y "feeling worried, sad or unhappy" and "having pain or discomfort", showed the highest frequency among women. Overall, our HRQoL were higher than South Africa, Germany and Italy references. Conclusion: The HRQoL was higher in boys than in girls The HRQoL. The dimensions of the EQ-5D-Y "feeling worried, sad or unhappy" and "having pain or discomfort", showed the highest frequency. The HRQoL by age and sex may be used in the evaluation of the health perceived among schoolchildren from Bogotá.


2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Eunji Kwon ◽  
Jeongok Park ◽  
Sue Kim ◽  
Kyung Hee Lee

Abstract Background Health-related quality of life (HRQOL) is an important concept to consider both individuals' ability to manage their daily lives and health status across the lifespan. Despite this variable's importance, there is a lack of clarification on the factors associated with HRQOL, especially for military women. The aim of this study was to examine factors associated with HRQOL of military women in the Republic of Korea (ROK) Army. Methods This cross-sectional study included 196 participants who were currently within their 5-year service period. HRQOL was measured by the Korean version of the Short-Form 36 Health Survey Questionnaire version 2.0 (SF-36v2), and depression was assessed using the Korean version of the Patient Health Questionnaire-9 (PHQ-9). Differences in HRQOL according to general and occupational factors were analyzed using the independent t-test and analysis of variance (ANOVA). Multiple linear regression analysis was performed to identify factors associated with the HRQOL of women serving as military junior officers. Results The mean score for the physical component summary (PCS) of SF-36v2 was 56.0 ± 5.8, and that for the mental component summary (MCS) of SF-36v2 was 47.2 ± 10.0. For depression, the mean score was 5.4 ± 5.2, whereas 19.4% of the participants scored more than 10 out of 27 points, which means moderate to severe. No variables showed statistically significant relationships with the PCS. However, military women showed a lower score for MCS when they were officers (adjusted β = − 3.52; 95% CI = − 5.47, − 1.58), had higher perceived stress (adjusted β = − 0.62, 95% CI = − 0.83, − 0.41), and a higher score for depression (adjusted β = − 0.86, 95% CI = − 1.10, − 0.63). Conclusions Although depression levels were not severe, it was a significant factor of HRQOL. Stress and depression were found to be significant factors associated with the MCS in military women. Therefore, to improve their HRQOL, the ROK Army should provide early screening, intervention, and management program for high-risk military women. In addition, an appropriate organizational atmosphere within the military must be created to promote such programs.


2021 ◽  
Author(s):  
Eunji Kwon ◽  
Jeongok Park ◽  
Sue Kim ◽  
Kyung Hee Lee

Abstract Background: Health-related quality of life (HRQOL) is an important concept to consider both individuals' ability to manage their daily lives and health status across the lifespan. Despite this variable's importance, there is a lack of clarification on the factors associated with HRQOL, especially for military women. The aim of this study was to examine factors associated with HRQOL of military women in the Korea Army.Methods: This cross-sectional study included 196 participants who were currently within their 5-year service period. Differences in HRQOL according to general and occupational factors were analyzed using the independent t-test and analysis of variance. Multiple linear regression analysis was performed to identify factors associated with the HRQOL of women serving as military junior officers.Results: The mean score for the physical component summary (PCS) of HRQOL was 56.0±5.8, and that for the mental component summary (MCS) of HRQOL was 47.2±10.0. For depression, the mean score was 5.4±5.2, whereas 19.4% of the participants scored more than 10 out of 27 points, which means moderate to severe. No variables showed statistically significant relationships with the PCS. However, significant relationships with the MCS were found for rank (β = -3.63, p <. 001), duty time (β = -4.93, p = .029), perceived stress (β = -0.61, p <. 001), and depression (β = -0.90, p <. 001).Conclusions: Although depression levels were not severe, it was a significant factor of HRQOL and thus the need for depression screening and regular depression management in women serving in the ROK Army to improve their HRQOL. Considering these results, nursing officers should conduct frequent testing related to mental health and take steps to manage high-risk groups. This study also contributes to the literature by providing basic data for the establishment of an appropriate health service environment and systematic health management policies.


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