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

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Abstract

Objectives

To assess and compare the Quality of Life (QOL) of children with beta-thalassemia major on regular transfusion therapy with normal children, and of the caregivers of children with beta-thalassemia major to that of caregivers of normal children.

Methods

A cross-sectional comparison of QOL in 75 thalassemic and 80 non-thalassemic children was conducted using the PedsQL™ 4.0 generic core scale. Also self-rated health was assessed in their caregivers using Short Form-36 Health Survey.

Results

The total QOL score according to child-self report [83.7 (10.8) vs. 97.6 (3.3); p < 0.001] and parent-proxy report [84.2 (11.9) vs. 96.7 (3.5); p < 0.001] was significantly lower in cases as compared with controls. It was found that a significantly higher proportion of caregivers of cases reported poor health compared with caregivers of controls (29.2% vs. 2.5%, p < 0.001). Even after adjusting for age, sex, socio-economic status, and total QOL score by the parent, it was found that caregivers of thalassemic children were significantly more likely to report poor health compared with those of controls (odds ratio: 15.8, 95% confidence intervals: 2.8–89.9).

Conclusions

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.

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Contributions

SS primary responsible for data collection; BS: Concept and data collection; PJ: Data collection and feedback on the concept & manuscript; MI: Data collection and feedback on the concept & manuscript; MSS: Concept, data analysis and feedback on manuscript. BS will act as guarantor for the paper.

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Authors and Affiliations

  1. Department of Pediatrics, Mahatma Gandhi Mission’s Medical College, Sector –1, Kamothe, Navi-Mumbai, Maharashtra, 410209, India

    Sapna Sharma & Bageshree Seth

  2. Navi-Mumbai Municipal Corporation General Hospital, Sector 10A, Vashi, Navi-Mumbai, Maharashtra, India

    Prashant Jawade

  3. Thalassemia Day Care Centre, Navi-Mumbai Municipal Corporation General Hospital, Sector 10A, Vashi, Navi-Mumbai, Maharashtra, India

    Madhavi Ingale

  4. MGM Institute of Health Sciences, Sector –1, Kamothe, Navi-Mumbai, Maharashtra, India

    Maninder Singh Setia

Authors
  1. Sapna Sharma
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  2. Bageshree Seth
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  3. Prashant Jawade
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  4. Madhavi Ingale
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  5. Maninder Singh Setia
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Correspondence to Bageshree Seth.

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Source of Funding

ICMR grant (Short Term Studentship program); Reference ID −2014-00208.

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Sharma, S., Seth, B., Jawade, P. et al. Quality of Life in Children with Thalassemia and their Caregivers in India. Indian J Pediatr 84, 188–194 (2017). https://doi.org/10.1007/s12098-016-2267-z

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  • DOI: https://doi.org/10.1007/s12098-016-2267-z

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