scholarly journals Evaluation of health-related quality of life and muscular strength in children with beta thalassemia major

2018 ◽  
Vol 19 (4) ◽  
pp. 353-357 ◽  
Author(s):  
Dina K. Ismail ◽  
Mona H. El-Tagui ◽  
Zeinab A. Hussein ◽  
Mohamed A. Eid ◽  
Sobhy M. Aly
Keyword(s):  
Quality Of Life ◽  
Muscular Strength ◽  
Thalassemia Major ◽  
Beta Thalassemia ◽  
Health Related Quality ◽  
Beta Thalassemia Major ◽  
Related Quality ◽  
Health Related

scholarly journals Understanding the impact of COVID-19 pandemic on health-related quality of life amongst Iranian patients with beta thalassemia major: a grounded theory

2021 ◽  
Vol 22 ◽  
Author(s):  
Mahdieh Arian ◽  
Mojtaba Vaismoradi ◽  
Zahra Badiee ◽  
Mohsen Soleimani
Keyword(s):  
Thalassemia Major ◽  
Beta Thalassemia ◽  
Health Related Quality ◽  
Negative Effects ◽  
Beta Thalassemia Major ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Iranian Patients

Abstract Background: The coronavirus disease 2019 (COVID-19) pandemic and the resulting measures can impact daily life and healthcare management amongst patients with beta thalassemia major. Methods: The Corbin and Strauss method of grounded theory was used to explore the impact of the COVID-19 pandemic on health-related quality of life (HRQoL) amongst Iranian patients with beta thalassemia major. Semi-structured interviews with 16 patients with thalassemia major in the eastern of Iran were performed. Data collection was conducted from 19 September through 18 November 2020. Collected data were recorded, transcribed, and coded to develop themes and subthemes. Paradigm components were sought to find out what happened to these patients and explore the process and events. Results: Insights from these interviews led to five major themes: ‘changing physical health’, ‘emotional and psychological reactions’, ‘changing the nature of relationships and the scope of social support’, ‘metamorphosis of ongoing healthcare, and ‘functionality and adaptation to new realities.’ The emerging core concept was labelled: ‘maintaining well-being balance.’ The COVID-19 pandemic disturbed the balance of life and health of the patients. Multiple strategies to maintain balance and reduce the negative effects of the COVID-19 pandemic on HRQoL were used by the patients, the healthcare team, and support systems. Conclusions: Due to the fear of COVID-19, the patients with beta thalassemia were less likely to contact healthcare professionals. They considered postponing blood transfusion and abandoned evaluating disease complications. Reduced access to the healthcare system and shifting resources from existing programmes to COVID-19 by the healthcare system were incompatible policies. These policies and strategies had strong and negative effects on the physical domain of HRQoL. The patients experienced a deterioration of emotional functioning. They reported a strong reduction in social functioning and felt lonely. Online interventions supporting mental health and social interactions and telemedicine can help during the times of social distancing and lockdowns.

scholarly journals Health related quality of life in Middle Eastern children with beta-thalassemia

2012 ◽  
Vol 12 (1) ◽  
Author(s):  
Giovanni Caocci ◽  
Fabio Efficace ◽  
Francesca Ciotti ◽  
Maria Grazia Roncarolo ◽  
Adriana Vacca ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Middle Eastern ◽  
Beta Thalassemia ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals PSY177 - HEALTH-RELATED QUALITY OF LIFE OF PATIENTS WITH BETA-THALASSEMIA

2018 ◽  
Vol 21 ◽  
pp. S466
Author(s):  
A. Kotzeva ◽  
J.M. Chen ◽  
C. Balijepalli ◽  
S. Ghosh ◽  
E. Druyts
Keyword(s):  
Quality Of Life ◽  
Beta Thalassemia ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

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

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