scholarly journals Health-Related Quality of Life and Associated Factors of Children with Transfusion-Dependent Thalassemia in Dubai, United Arab Emirates

2021 ◽  
Vol 13 (7) ◽  
pp. 18
Author(s):  
Shaikha Alshamsi ◽  
Samer Hamidi ◽  
Hacer Ozgen Narci
Keyword(s):  
Quality Of Life ◽  
United Arab Emirates ◽  
Household Income ◽  
Psychosocial Health ◽  
Summary Score ◽  
Health Related Quality ◽  
Monthly Household Income ◽  
Related Quality ◽  
Health Related

BACKGROUND: Patients with transfusion-dependent thalassemia require lifelong blood transfusions and iron chelation therapy. Iron overload associated with regular blood transfusion leads to a significant defect in the health-related quality of life (HRQoL) of patients with transfusion-dependent thalassemia (TDT). Quality of life has become a significant component of care, and it is therefore necessary to focus on the HRQoL of patients with transfusion-dependent thalassemia. OBJECTIVES: To assess the HRQoL of children with transfusion-dependent thalassemia, identify the sociodemographic and clinical characteristics that affect the HRQoL, and identify the risk factors for poor HRQoL in children with transfusion-dependent thalassemia. STUDY DESIGN: A descriptive cross-sectional study was used to address the study’s objectives. SETTING: A representative sample was recruited from the Dubai Thalassemia Center in the United Arab Emirates. PARTICIPANTS: A total of 68 patients with transfusion-dependent thalassemia aged 2-18 years. INTERVENTION: PedsQL 4.0 was applied to assess the HRQoL. The total HRQoL score was treated as the dependent variable in the study. Regression analysis was applied to study the effect of sociodemographic and clinical characteristics on HRQoL. RESULTS: This study included 68 patients with TDT. Among them, 55.9% fell into the 13-18-year age group, and 42.6% were male. In addition, 57.4% were non-UAE nationals, and 44.1% of the children had less than 10,000 AED as monthly household income. The median (IQR) physical health summary score was 89.9 (15.6) and the psychosocial health summary score was 90.0 (10.3). Total PedsQL scores were significantly higher for younger children, those with a higher monthly household income, and those without complications. Increasing children’s age was significantly correlated with lower total, physical, and psychosocial health summary PedsQL scores, whereas lower monthly household income was significantly correlated with lower total and psychosocial health summary PedsQL scores. Controlling for other variables, increasing patients’ age was associated with worse total PedsQL scores. CONCLUSIONS: Children with TDT and their families require long-term support for the prevention of physical and mental problems associated with TDT.

Flint Kids Cook: positive influence of a farmers’ market cooking and nutrition programme on health-related quality of life of US children in a low-income, urban community

2020 ◽  
pp. 1-9
Author(s):  
Amy Saxe-Custack ◽  
Jenny LaChance ◽  
Mona Hanna-Attisha ◽  
Chantel Dawson
Keyword(s):  
Quality Of Life ◽  
Self Efficacy ◽  
Psychosocial Health ◽  
Summary Score ◽  
Health Related Quality ◽  
Farmers Market ◽  
Dietary Changes ◽  
Related Quality ◽  
Health Related

Abstract Objective: To examine changes in health-related quality of life (HRQoL) among youth who participated in Flint Kids Cook, a 6-week healthy cooking programme for children, and assess whether changes in HRQoL were associated with changes in cooking self-efficacy, attitude towards cooking (ATC) and diet. Design: Pre-post survey (Pediatric Quality of Life Inventory, Block Kids Food Screener, 8-item cooking self-efficacy, 6-item ATC) using child self-report at baseline and programme exit. Analysis involved paired sample t-tests and Pearson’s correlations. Setting: Farmers’ market in Flint, Michigan, USA. Participants: Children (n 186; 55·9 % female, 72·6 % African American) participated in Flint Kids Cook from October 2017 to February 2020 (mean age 10·55 ± 1·83 years; range 8–15). Results: Mean HRQoL summary score improved (P < 0·001) from baseline (77·22 ± 14·27) to programme exit (81·62 ± 14·43), as did mean psychosocial health summary score (74·68 ± 15·68 v. 79·04 ± 16·46, P = 0·001). Similarly, physical (P = 0·016), emotional (P = 0·002), social (P = 0·037), and school functioning (P = 0·002) improved. There was a correlation between change in HRQoL summary score and change in ATC (r = –0·194, P = 0·025) as well as change in cooking self-efficacy (r = –0·234, P = 0·008). Changes in HRQoL and psychosocial health summary scores were not correlated with dietary changes, which included decreased added sugar (P = 0·019) and fruit juice (P = 0·004) intake. Conclusions: This study is the first to report modest yet significant improvements in HRQoL among children and adolescents who participated in a healthy cooking programme. Results suggest that cooking programmes for youth may provide important psychosocial health benefits that are unrelated to dietary changes.

scholarly journals Health Related Quality of Life of Children with Thalassemia Major in Two Selected Hospitals in Sri Lanka

2020 ◽  
Vol 1 ◽  
Author(s):  
W.A.S.V. Silva ◽  
H.H. Peiris
Keyword(s):  
Quality Of Life ◽  
Sri Lanka ◽  
Psychosocial Health ◽  
Thalassemia Major ◽  
Summary Score ◽  
Blood Transfusions ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Introduction: Thalassemia is an inherited hemoglobin disorder. There are two types; thalassemia major and minor. Thalassemia major directly affects children’s physical, emotional, social and school functions. Health Related Quality of Life (HRQoL) is an important indicator to assess the health of human. Methods: A cross sectional study was conducted using 60 children (age 2-12 years) with thalassemia major who attended clinics in two selected hospitals in Sri Lanka from July to September 2018. Demographic data and risk factors were collected using a self-administered questionnaire. HRQoL data were collected using the Pediatric Quality of Life Inventory Version 4.0 Generic Core Scale. Data were analyzed using SPSS. Results: Mean values of the total functioning scores of physical, emotional, social and school were 89.42 (±9.20), 87.83 (±10.43), 95.00 (±7.53) and 78.75 (±14.13) respectively. Age of the children was significantly associated with emotional functioning (p=0.046), school functioning (p=0.023), psychosocial health (p=0.021) and the total summary score (p=0.006). Total number of blood transfusions per year of the patient was significantly associated with physical functioning (p=0.002), psychosocial health (p=0.045) and total summary score (p=0.034). Conclusions: Age and the total number of blood transfusions per year significantly affect the HRQoL of children with thalassemia major. Gender, type of iron chelation and age at first blood transfusion did not affect HRQoL of the children.Keywords: HRQoL, Thalassemia major, Haemoglobin disorder

scholarly journals Effect of multimorbidity patterns on the decline in health-related quality of life: a nationwide prospective cohort study in Japan

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e047812
Author(s):  
Takuya Aoki ◽  
Shunichi Fukuhara ◽  
Yasuki Fujinuma ◽  
Yosuke Yamamoto
Keyword(s):  
Quality Of Life ◽  
Cohort Study ◽  
Clinical Outcomes ◽  
Prospective Cohort ◽  
Summary Score ◽  
Health Related Quality ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related

ObjectivesLongitudinal studies, which consider multimorbidity patterns, are useful for better clarifying the effect of multimorbidity on health-related quality of life (HRQoL) and for identifying the target population with poorer clinical outcomes among patients with multimorbidity. This study aimed to examine the effects of different multimorbidity patterns on the decline in HRQoL.DesignNationwide prospective cohort study.SettingJapanese adult residents.ParticipantsResidents aged ≥50 years selected by the quota sampling method.Primary outcome measureClinically relevant decline in HRQoL was defined as a 0.50 SD (5-point) decrease in the 36-Item Short Form Health Survey (SF-36) component summary scores for 1 year.ResultsIn total, 1211 participants completed the follow-up survey. Among the multimorbidity patterns identified using confirmatory factor analysis, multivariable logistic regression analyses revealed that high cardiovascular/renal/metabolic and malignant/digestive/urologic pattern scores were significantly associated with the clinically relevant decline in SF-36 physical component summary score (adjusted OR (aOR)=1.25, 95% CI: 1.08 to 1.44 and aOR=1.28, 95% CI: 1.04 to 1.58, respectively). High cardiovascular/renal/metabolic pattern score was also significantly associated with the clinically relevant decline in SF-36 role/social component summary score (aOR=1.23, 95% CI: 1.06 to 1.42).ConclusionsOur study revealed that multimorbidity patterns have different effects on the clinically relevant decline in HRQoL for 1 year. These findings can be useful in identifying populations at high risk and with poor clinical outcomes among patients with chronic diseases and multimorbidity for efficient resource allocation.

scholarly journals Health-Related Quality of Life in Asian Differentiated Thyroid Cancer Survivors

2021 ◽  
Vol 28 ◽  
pp. 107327482110297
Author(s):  
Wing-Lok Chan ◽  
Horace Cheuk-Wai Choi ◽  
Brian Lang ◽  
Kai-Pun Wong ◽  
Kwok-Keung Yuen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Thyroid Cancer ◽  
Cancer Survivors ◽  
Differentiated Thyroid Cancer ◽  
Summary Score ◽  
Health Related Quality ◽  
Factors Associated ◽  
Related Quality ◽  
Health Related

Background: Health-related quality of life (HRQoL) is important for differentiated thyroid cancer survivors, but data for Asian survivors is lacking. This study aimed to have an overview of, and identify any disease-or treatment-related factors associated with, HRQoL in Asian differentiated thyroid cancer survivors. Patients and Methods: Thyroid cancer survivors were recruited from the thyroid clinics at Queen Mary Hospital, Hong Kong from February 2016 to December 2016. All adult differentiated thyroid cancer patients with stable disease more than or equal to 1 year received a survey on HRQoL using the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) and Thyroid cancer specific quality of life (THYCA-QoL) questionnaire. Clinical information was collected retrospectively from the computerized clinical management system. To identify factors associated with poor HRQoL, univariable and stepwise multivariable regression analysis were performed. Results: A total of 613 survivors completed the questionnaires (response rate: 82.1%; female: 80.1%; median survivorship: 7.4 years (range: 1.0-48.2 years)). The QLQ-C30 summary score mean was 84.4 (standard deviation (SD): 12.7) while the THYCA-QoL summary score mean was 39.9 (SD: 9.7). The 2 highest symptom subscales were fatigue (mean: 26.4, SD: 20.6) and insomnia (mean: 26.2, SD: 27.6). Factors associated with worse HRQoL included serum thyrotropin (TSH) greater than 1.0 mIU/L, unemployment, and concomitant psychiatric disorders. Concomitant psychiatric illness (n = 40/613, 6.5%) also showed significant association with most of the symptom and functional subscales. Conclusions: Fatigue and insomnia were the 2 most common symptoms experienced by our differentiated thyroid cancer survivors. Long-term survivorship care with monitoring serum TSH level, supporting return-to-work and screening for concomitant psychiatric disorders should be offered.

scholarly journals Symptom prevalence and quality of life of patients with end-stage liver disease: A systematic review and meta-analysis

2018 ◽  
Vol 33 (1) ◽  
pp. 24-36 ◽  
Author(s):  
Jen-Kuei Peng ◽  
Nilay Hepgul ◽  
Irene J Higginson ◽  
Wei Gao
Keyword(s):  
Quality Of Life ◽  
Liver Disease ◽  
Summary Score ◽  
Health Related Quality ◽  
End Stage Liver Disease ◽  
Related Quality ◽  
Health Related ◽  
Symptom Prevalence ◽  
End Stage

Background: End-stage liver disease is a common cause of morbidity and mortality worldwide, yet little is known about its symptomatology and impact on health-related quality of life. Aim: To describe symptom prevalence and health-related quality of life of patients with end-stage liver disease to improve care. Design: Systematic review. Data sources: We searched eight electronic databases from January 1980 to June 2018 for studies investigating symptom prevalence or health-related quality of life of adult patients with end-stage liver disease. No language restrictions were applied. Meta-analyses were performed where appropriate. Results: We included 80 studies: 35 assessing symptom prevalence, 41 assessing health-related quality of life, and 4 both. The instruments assessing symptoms varied across studies. The most frequently reported symptoms were as follows: pain (prevalence range 30%–79%), breathlessness (20%–88%), muscle cramps (56%–68%), sleep disturbance (insomnia 26%–77%, daytime sleepiness 29.5%–71%), and psychological symptoms (depression 4.5%–64%, anxiety 14%–45%). Erectile dysfunction was prevalent (53%–93%) in men. The health-related quality of life of patients with end-stage liver disease was significantly impaired when compared to healthy controls or patients with chronic liver disease. Compared with compensated cirrhosis, decompensation led to significant worsening of both components of the 36-Item Short Form Survey although to a larger degree for the Physical Component Summary score (decrease from average 6.4 (95% confidence interval: 4.0–8.8); p < 0.001) than for the Mental Component Summary score (4.5 (95% confidence interval: 2.4–6.6); p < 0.001). Conclusion: The symptom prevalence of patients with end-stage liver disease resembled that of patients with other advanced conditions. Given the diversity of symptoms and significantly impaired health-related quality of life, multidisciplinary approach and timely intervention are crucial.

scholarly journals Potential factors impacting health-related quality of life among patients with epilepsy: Results from the United Arab Emirates

Seizure ◽  
2017 ◽  
Vol 53 ◽  
pp. 13-17 ◽  
Author(s):  
Taoufik Alsaadi ◽  
Seada Kassie ◽  
Khadija El Hammasi ◽  
Tarek M. Shahrour ◽  
Mustafa Shakra ◽  
...  
Keyword(s):  
Quality Of Life ◽  
United Arab Emirates ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Potential Factors ◽  
Patients With Epilepsy

scholarly journals Association between health related quality of life and progression of chronic kidney disease

2019 ◽  
Vol 9 (1) ◽  
Author(s):  
Tae Ryom Oh ◽  
Hong Sang Choi ◽  
Chang Seong Kim ◽  
Eun Hui Bae ◽  
Yun Kyu Oh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Chronic Kidney Disease ◽  
Cohort Study ◽  
Kidney Disease ◽  
Summary Score ◽  
Health Related Quality ◽  
Ckd Progression ◽  
Related Quality ◽  
Health Related

AbstractThe impact of health-related quality of life (HRQOL) on outcomes remains unclear in chronic kidney disease (CKD) patients despite its importance in socioeconomic aspects and individual health. We aim to identify the relationship between HRQOL and progression of CKD in pre-dialysis patients. A total 1622 patients with CKD were analyzed in the KoreaN cohort Study for Outcomes in patients With Chronic Kidney Disease, a prospective cohort study. CKD progression was defined as one or more of the following: initiation of dialysis or transplantation, a two-fold increase in baseline serum creatinine levels, or a 50% decline in the estimated glomerular filtration rate during the follow-up period. The group with CKD progression had lower scores of HRQOL than the group without CKD progression. A fully adjusted Cox proportional hazard ratio model showed that each low baseline physical and mental component summary score was associated with a higher risk of CKD progression. In Kaplan-Meier survival analysis using propensity score matched data, only low physical component summary scores showed statistical significance with CKD progression. Our study highlights low physical component summary score for an important prognostic factor of CKD progression. Risk-modification interventions for high-risk patients may provide benefits to individuals.

scholarly journals Effects of Diabetic Complications on Health-Related Quality of Life Impairment in Vietnamese Patients with Type 2 Diabetes

2020 ◽  
Vol 2020 ◽  
pp. 1-8 ◽  
Author(s):  
Tuyen Ba Pham ◽  
Trung Thanh Nguyen ◽  
Huyen Thi Truong ◽  
Chin Huu Trinh ◽  
Ha Ngoc Thi Du ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Type 2 Diabetes ◽  
Social Functioning ◽  
Diabetic Complications ◽  
Summary Score ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Complications of type 2 diabetes mellitus (T2DM) adversely influence patients’ health-related quality of life (HRQOL). This study is aimed at examining HRQOL of T2DM patients, as well as the effects of diabetic complications and comorbidities on HRQOL in this population. This was a hospital-based cross-sectional study on 214 T2DM patients in Hanoi, Vietnam. Short-form 12 version 2 (SF-12v2) and EuroQOL-5 Dimensions-5 Levels (EQ-5D-5L) were employed to measure the HRQOL. The median physical component summary score (PCS), mental component summary score (MCS), and EQ-5D index were 45.6, 56.3, and 0.94, respectively. Having at least one diabetic complication was associated with the reduction of SF-12 scores in social functioning (Diff.=−5.69, 95%CI=−9.24; -2.13), role emotional (Diff.=−1.81, 95%CI=−3.12; -0.51), and MCS (Diff.=−2.55, 95%CI=−5.01; -0.1). Significant decrement of physical functioning, role physical, social functioning, role emotional, and MCS was found in patients having diabetic heart diseases compared to those without diabetic complications. The study revealed that HRQOL of Vietnamese patients with diabetic complications was moderately low, especially in social and mental health perspectives. Strategies to prevent the onset of diabetic complications should be developed as a priority in diabetes management.

The effect of paediatric syncope on health-related quality of life

2012 ◽  
Vol 22 (5) ◽  
pp. 583-588 ◽  
Author(s):  
Jeffrey B. Anderson ◽  
Richard J. Czosek ◽  
Timothy K. Knilans ◽  
Bradley S. Marino
Keyword(s):  
Quality Of Life ◽  
Medical Center ◽  
Structural Heart Disease ◽  
Psychosocial Health ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Stage Renal Disease ◽  
Historical Controls

AbstractBackgroundSyncope is common in children and adolescents and most commonly represents neurocardiogenic syncope. No information has been reported regarding the effect of syncope on health-related quality of life in children.MethodsThis was a retrospective cohort study of patients seen in the Heart Institute Syncope Clinic at Cincinnati Children's Hospital Medical Center between July, 2009 and June, 2010. Health-related quality of life was assessed using the PedsQL™ tool. PedsQL™ scores were compared with both healthy historical controls and historical controls with chronic illnesses.ResultsA total of 106 patients were included for analysis. In all, 90% were Caucasian and 63% were girls. The median age was 15.1 years (8.2–21.6). Compared with healthy controls, patients had lower PedsQL™ scores: Total score (75.2 versus 83.8, p < 0.0001); Physical Health Summary (78.8 versus 87.5, p < 0.0001); Psychosocial Health Summary (73.9 versus 81.9, p < 0.001), Emotional Functioning (68.9 versus 79.3, p < 0.001); and School Functioning (66.4 versus 81.1, p < 0.001). No difference was seen in Social Functioning (86.2 versus 85.2, p = 0.81). Patients also had lower PedsQL™ Total scores than patients with diabetes mellitus (p < 0.0001) and similar scores to patients with asthma, end-stage renal disease, obesity, and structural heart disease.ConclusionChildren with syncope, although typically benign in aetiology, can have low health-related quality of life.

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