Quality of Life in Children with Thalassemia and their Caregivers in India

Sharma, Sapna; Seth, Bageshree; Jawade, Prashant; Ingale, Madhavi; Setia, Maninder Singh

doi:10.1007/s12098-016-2267-z

Cited by 36 publications

(33 citation statements)

References 15 publications

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“…The same has been reflected in the study by Sharma S, Seth B et al which focussed on the emotional stress faced by parents in raising their thalassemic child and they found significantly higher proportion of poor health in caregivers than the control group. 1 A study done by Ismail A et al in thalassemic children in Malaysia revealed that the quality of life of thalassemia patients is indeed much lower than the quality of life of healthy controls regardless of age, gender, ethnicity. 9 Majority of parents in this study, (80%) felt disease would hamper child's education as also seen in the study mentioned above.…”

Section: Discussionmentioning

confidence: 99%

“…The worldwide prevalence of annually affected conceptions with Beta thalassemia is 42,409 cases with annual births worldwide being 1,28,667,000. 1 High prevalence is present in populations in the Mediterranean, Middle-East, microcytosis and mild anemia. 2 Thalassemia intermediahave atleast 1 beta + thalassemia mutation and is less severe phenotype such that they do not require regular transfusions.…”

Section: Introductionmentioning

confidence: 99%

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Knowledge, practice and experiences of parents with a thalassemic child

Saxena

Sharif

Siddiqui

et al. 2017

Int J Contemp Pediatr

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Background: Thalassaemia is a chronic disorder requiring lifelong transfusions and medications causing emotional and financial burden to the family. This study was done to assess the knowledge and awareness of parents having a thalassemic child and to ameliorate their experiences in the upbringing of their child.Methods:A cross sectional, descriptive study was conducted in Pediatric Ward of a Tertiary care Hospital in Navi Mumbai from May-August 2016 in which parents of 40 beta Thalassemia major children between age group of 6 months to 15 years were enrolled. Parents were interviewed through a questionnaire to assess their knowledge, awareness, the practices they follow in regard to the transfusion, treatment, vaccination and prevention of thalassemia. The study also focuses on the emotional suffering of the parents.Results: 47.5% of parents were aware of thalassemia being a genetic disorder.62.5% were aware of regular blood transfusion. 23 parents were aware of the regular medications taken by their children. 42.5% parents had adequate knowledge of the optional vaccines to be taken. 90% parents followed a good practice of getting their child for regular blood transfusion and 92.5% gave them regular medicines.31 parents would periodically get their child investigated but 65% of parents lacked in giving optional vaccines to the child.60% agreed to undergo MTP while only 45% knew about the antenatal detection.Conclusions:Majority of parents followed good practice and had a positive attitude, though the knowledge and awareness about the disease was inadequate.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Knowledge, practice and experiences of parents with a thalassemic child

Saxena

Sharif

Siddiqui

et al. 2017

Int J Contemp Pediatr

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“…For establishing a causal association, a longitudinal design would have been better, but due to feasibility issue and time constraint, it could not be done. On the other hand, some may argue that case-control design would have been better for the study, as done in some previous studies [37,41]. Still, the researcher thought it would be unethical if CarerQoL of caregivers of thalassemic children (cases) would be compared with CarerQoL of caregivers of healthy children of the same age and sex (controls).…”

Section: Caregivers Sexmentioning

confidence: 96%

Care-Related Quality of Life of Caregivers of Beta-Thalassemia Major Children: An Epidemiological Study in Eastern India

Biswas¹,

Naskar²,

Basu³

et al. 2020

JEGH

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Caregivers are the persons who provide care at the time of distress or illness. They face many stress and strain to provide the best possible medical care for their children. There are very few studies that explored the care-related quality of life (CarerQoL) of the caregivers of thalassemic children and its correlates. With this background, the current study was designed to explore the CarerQoL of the caregivers of β -Thalassemia Major ( β -TM) children and its various correlates. It was a cross-sectional observational study conducted among caregivers of β -TM children attending a tertiary care health facility of Eastern India in between May 2016 and April 2017 with a structured schedule. The median CarerQoL score was found to be 5 with an interquartile range of 4–7 (range: 11). In the final multivariable logistic regression model, care receivers’ (thalassemic children) age [adjusted odds ratio (AOR): 2.2 (1.2–4.2)], spleen status [AOR: 4.1 (2.0–8.7)], blood transfusion frequency [AOR: 2.1 (1.1–3.9)], and quality of life (QoL) [AOR: 3.0 (1.6–5.5)] and caregivers’ educational level [AOR: 2.3 (1.2–4.1)], perceived social discrimination [AOR: 2.3 (1.3–4.1)], debt [AOR: 2.3 (1.2–4.3)], nongovernmental organization assistance [AOR: 2.0 (1.0–4.0)], and wage loss due to seeking treatment [AOR: 1.9 (1.1–3.4)] were significant predictors of CarerQoL of the study participants adjusted with their age, sex, working status, per-capita monthly income, knowledge level related to the disease, and care receivers’ comorbidity status. To conclude, CarerQoL of the study participants were significantly associated with QoL of their wards. Other significant associates of CarerQoL were caregivers’ education level, financial profile, patients’ age, and their clinico-therapeutic profile.

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“…The data from western India reported a prevalence of up to 9.5% [ 3 ]. Children with beta-thalassemia major have a poor quality of life [ 4 - 5 ]. Similarly, thalassemia is also associated with cardiac complications [ 6 ].…”

Section: Introductionmentioning

confidence: 99%

Efficacy and Safety of Wheat Grass in Thalassemic Children on Regular Blood Transfusion

Mutha¹,

Shah²,

Kinikar³

et al. 2018

Cureus

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Background: In thalassemia, mutations either in alpha or beta chain synthesis results in low hemoglobin (Hb). Wheatgrass has been used for many years for health purposes. Some reports suggest the beneficial effect of wheatgrass on transfusion requirements. Folic acid is also known to play an important role in several biochemical reactions. In some patients with thalassemia, the supplementation of folic acid is useful.Objective: To evaluate the efficacy and safety of wheatgrass in children with thalassemia receiving chronic blood transfusions.Material and methods: In this randomized prospective study, 69 children with thalassemia were divided into the wheatgrass group and the control group (no wheatgrass). Both groups received a regular blood transfusion and folic acid. The treatment duration was 18 months. Anthropometric parameters, number of transfusions, and amount of blood transfused were compared within and between the groups at the end of the therapy. Clinical examinations, laboratory investigations, and ultrasounds for liver and spleen span were performed at the baseline and then every six months till 18 months. Adverse effects (if any) were noted on every visit. Quality of life (QOL) was evaluated before and at the end of the study using a questionnaire.Results: Sixty-nine (study group (n=45; mean age 6.35 ± 2.65 yrs); control group (n=24; 4.86 ± 2.77 yrs)) patients were enrolled, of which 12 from the study group and three from the control group did not complete the study. The difference in liver size within the wheatgrass group was significant (P <0.021) only at 18 months but not in the control group at any time point. The difference in spleen size was significant within the wheatgrass group (P<0.005) as well as the control group (P<0.001) at 18 months only. The difference in serum ferritin levels was not significant between the two groups. The increase in serum ferritin levels at the end of the study was significant in the control group when compared to the baseline (P<0.01). There was no difference in the average number of transfusions or in the blood transfusion requirement between the two groups. The difference in the QOL at the start and end was significant in the wheatgrass group (P<0.05).Conclusion: Wheatgrass appears to play a promising role in children with thalassemia receiving chronic blood transfusions.

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Quality of Life in Children with Thalassemia and their Caregivers in India

Abstract: Health Related QOL is significantly affected in children with beta-thalassemia major on regular transfusion across all age groups, gender and socio-economic classes and also in their caregivers.

Cited by 36 publications

References 15 publications

Knowledge, practice and experiences of parents with a thalassemic child

Knowledge, practice and experiences of parents with a thalassemic child

Care-Related Quality of Life of Caregivers of Beta-Thalassemia Major Children: An Epidemiological Study in Eastern India

Efficacy and Safety of Wheat Grass in Thalassemic Children on Regular Blood Transfusion

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