Health-related quality of life among children with transfusion-dependent thalassemia: A cross-sectional study in Malaysia

Shafie, Asrul Akmal; Chhabra, Irwinder Kaur; Wong, Jacqueline Hui Yi; Mohammed, Noor Syahireen; Ibrahim, Hishamshah Mohd; Alias, Hamidah

doi:10.1186/s12955-020-01381-5

Cited by 17 publications

(17 citation statements)

References 20 publications

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“…Understanding how the disease and treatment affects the HRQoL dimensions is imperative in improving the delivery of care beyond the clinical markers of the disease. 4 It is in line with the results of a study conducted by Behdani et al (2015) using the PSCL questionnaire showed that there was a significant relationship between depression, anxiety, quality of life, and behavioral screening between thalassemia major adolescents and healthy adolescents. Patients with thalassemia have a lower QOL than their peers (P = 0.001), the rate of depression is higher in this group (P = 0.015), Also behavioral problems in these children are more than healthy subjects.…”

Section: Discussionsupporting

confidence: 86%

Psychological Problems of Pediatric Patients with Thalassemia

Pranandita

2021

OAIJMR

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Pediatric patients with thalassemia experience various psychosocial problems that have an impact on the decreased quality of life resulting in depression. The purpose of this study was to look at psychosocial problems and things that happen to children and adolescents with thalassemia related psychosocial experiences. The literature study was made by analyzing scientific articles published from 2015-2020 and in English. Data were obtained from the Scopus, Wiley, Pumbed, and Proquest databases with the keywords psychosocial, pediatric, thalassemia, and quality of life. The results of the literature study found 11 articles that matched the inclusion and exclusion criteria. The course of the disease from thalassemia that requires intense treatment, the patient faces a considerable psychological burden. Social isolation, decreased self-esteem, poor academic performance, contribute to psychological stress. This will have an impact on decreasing the quality of life. The results of the review of the literature review can be used as basic data in the development of counseling and mentoring programs for pediatric and adolescent patients with thalassemia major.

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Section: Discussionsupporting

confidence: 86%

Psychological Problems of Pediatric Patients with Thalassemia

Pranandita

2021

OAIJMR

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“…Higher pretransfusion hemoglobin levels and low serum ferritin levels were independent predictors of better QoL scores (Elalfy et al, 2014;Mevada et al, 2016), while poor QoL was associated with the presence of complications, low economic level, female sex, hepatomegaly, high ferritin level (Clarke et al, 2010;Hakeem et al, 2018;Jameel & Im, 2015;Sobota et al, 2011;Tuysuz & Tayfun, 2017), increasing age, and the use of combined therapy of ICT, (Shafie et al, 2020). Furthermore, delays in diagnosis and introduction of ICT contributed to a negative effect on the total PedsQL score (Mevada et al, 2016).…”

Section: Relevant Literaturementioning

confidence: 99%

“…Children with TDT had significantly lower school functioning compared to healthy children (Mevada et al, 2016;Nashwan et al, 2018). Using deferoxamine was a predictor for lower school functioning (Thavorncharoensap et al, 2010), while the physical functioning of TDT patients was predicted by the patient's age (Shafie et al, 2020), severity of the disease , history of thalassemia in the family, and low financial status (Ayoub et al, 2013).…”

Section: Relevant Literaturementioning

confidence: 99%

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

Alshamsi¹,

Hamidi²,

Narcı³

2021

GJHS

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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.

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“…Physical health Education (higher) 5.17 Our findings suggested that the participants most likely could have received adequate and appropriate medical treatment early in life because the majority have no other co-morbidities, have gained employment and have completed at least secondary education. Such achievements would be their main concerns and struggles in life seven to ten years ago [4,26]. The ability to obtain higher educational level has also been used as a benchmark towards a higher social level, better QOL and a better income [25][26][27][28].…”

Section: Multiple Linear Regression a (Coefficient (95% Ci))mentioning

confidence: 99%

Quality of life and challenges experienced by the surviving adults with transfusion dependent thalassaemia in Malaysia: a cross sectional study

Chean

Rahim

et al. 2022

Health Qual Life Outcomes

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Background Improvement in medical management has enabled transfusion dependent thalassaemia (TDT) patients to survive beyond childhood, building families, and contributing to the labour force and society. Knowledge about their adult life would provide guidance on how to support their needs. This study aims to explore the general well-being of adults with TDT, their employment status and challenges. Methods This study recruited 450 people with TDT, aged 18 and above, of both genders through all regional Thalassaemia societies in Malaysia and from the two participating hospitals, over five months in year 2016. A self-administered questionnaire including ‘Healthy Days Core Module’, WHOQOL-BREF and employment measurements was used. Multiple linear regression models were fitted with associations adjusted for several potential confounders. Results A total of 196 adults with TDT responded to the survey (43.6% response rate). Almost half (45%) had comorbidities and 9% suffered multiple complications: bone-related (13%), hormonal (12%), cardiac (3%) and infections (2%), resulting in 23% seeking treatment more than twice monthly. Within a month, they suffered from at least three days with poor physical and or mental health and their normal daily activities were disrupted up to three days. 36% were jobless and 38% of those with a job were receiving salaries below RM1000. The mean WHOQOL-BREF score (mean (SD)) was: physical health 62.6 (15.5), psychological health 64.7 (15.7), social relationship 64 (15.9), environmental health 60.8 (16.7). Having days with mental issues, financial status, education level, ethnic and marital status were main factors affecting QOL scores. Open questions showed dissatisfaction with health service provision, conflicting judgement in prioritising between health and job, and poor public empathy. Conclusion The adults with TDT perceived their health as good and had less unhealthy days when compared with people with other chronic diseases. However, some perceived themselves to be facing more life disruption in a rather non-supportive community and that health services do not meet their needs. Future qualitative studies are needed to focus on their perceived needs and to look for more tailored supportive approaches.

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Health-related quality of life among children with transfusion-dependent thalassemia: A cross-sectional study in Malaysia

Cited by 17 publications

References 20 publications

Psychological Problems of Pediatric Patients with Thalassemia

Psychological Problems of Pediatric Patients with Thalassemia

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

Quality of life and challenges experienced by the surviving adults with transfusion dependent thalassaemia in Malaysia: a cross sectional study

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