Health-related Quality of Life and Associated Factors Among Thalassemia Major Patients, Southeast of Iran

Abstract

Low quality of life (QOL) is a feature that has been overlooked in thalassemia major (TM) patients. Our aim was to assess QOL in school-aged TM patients in Zabol city and surrounding rural areas in southeast of Iran. The study was performed in 2014. QOL was evaluated using Pediatric Quality of Life Inventory 4 (PedsQL4) questionnaire addressing physical, emotional, social, and educational, along with psychological health in 80 TM patients. Also, 80 age-matched and sex-matched subjects without any chronic illness served as control group. Mean age of the patients was 11.7±4.1 years old. Total QOL scores was 51.4±13.3 in the patients. In comparison, mean value of total QOL score in controls was 91.1±3.3 (P<0.0001). Poor and moderate QOL were observed in 44.7% and 48.7% of the patients, respectively. Mean functioning scores for physical, emotional, social, educational, and psychological dimensions in the patients were 56.2±119, 69.6.4±23.3, 27.1±22.1, 52.3±18.1, and 48.9±11.8, respectively. The lowest level of QOL was related to the social field (81.3% with less than average score), while the highest QOL was related to the emotional aspect (58.8% with good QOL; >75 scores). Overall, female sex, poor compliance with chelation therapy, and residency in urban areas were significantly associated with poor QOL. In conclusion, providing a psychiatric health package seems to be essential for improving QOL in TM patients, especially in social field.

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

“…Previous studies have shown a significant difference in the QoL scores among boys and girls (Bazi et al, 2017;Dhirar et al, 2016;Jameel & Im, 2015;Negin Hadi, Donya Karami, & Ali Montazeri, 2009). Dhirar et al (2016) reported a significantly higher HRQoL score in boys' emotional domain than in girls, but the total score was not significantly different between them.…”

“…Negin Hadi et al (2009) revealed that female patients had higher scores than male patients in social functioning. Bazi et al (2017) revealed that female patients had lower QoL scores compared to male patients. In our study, sex was not associated with the QoL of TDT patients.…”

Patient Perspective on Iron Chelation Therapy: Barriers and Facilitators of Medication Adherence

“…According to Necessity-Concern Framework, unaddressed high concerns about medications predispose patients to problem of nonadherence (32). The occurrence of drugs-related problems, specifically adverse drug reactions, is disruptive to patients' quality of life and affects their adherence, evident from the many studies conducted among thalassemia patients (4,(6)(7)(8). It is, therefore, important to address not only patients' knowledge but also their beliefs and concerns about medications, as emphasized by the UK National Institute for Health and Care Excellence (NICE) (33).…”

“…Advancement in blood transfusions and ICT transforms this disease from fatal childhood disease to adult chronic disease (1). Numerous studies have reported that advancement in medical care and good adherence to ICT treatment are instrumental to increase patients' survival and quality of life (4)(5)(6)(7)(8)(9)(10).…”

Improving Quality of Life among Thalassemia Major in Adolescents: Video Assisted Teaching

“…Parents of adolescents with B-TM develop concerns regarding poor growth and development, frequent hospitalization and financial issues. The above-mentioned factors prompt us to pivot the focus on the psychosocial wellbeing and Quality of Life among adolescents with B-TM [5]. There are clear evidences from the past literatures that there is a poor prognosis in patients with B-TM along with Depression, anxiety and stress.…”