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 Table of Contents  
ORIGINAL ARTICLE
Year : 2017  |  Volume : 4  |  Issue : 1  |  Page : 33-37

To study the quality of life and its relation with socioeconomic status in thalassemic adolescents in a tertiary care center


1 MBBS Student, Christian Medical College and Hospital, Ludhiana, Punjab, India
2 Department of Physiology, Christian Medical College and Hospital, Ludhiana, Punjab, India
3 Department of Paediatrics, Christian Medical College and Hospital, Ludhiana, Punjab, India

Date of Web Publication19-Dec-2016

Correspondence Address:
Navjot Kaur Grewal
House No: 35, Defence Colony, Bhai Randhir Singh Nagar, Ludhiana - 141 012, Punjab
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/2348-3334.196062

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  Abstract 

Background and Objectives: A large number of children are afflicted by thalassemia in India which may significantly impact their quality of life (QOL); hence, we hypothesized that there exists a strong relationship between socioeconomic status and QOL. We thus designed this study to assess QOL in adolescents diagnosed with β thalassemia major and its association with socioeconomic status. Further, we also compared the QOL and socioeconomic status between thalassemic and nonthalassemic adolescents. Materials and Methods: We recruited 35 adolescents diagnosed with β thalassemia major and 35 nonthalassemics in the age group of 10-18 years who matched in age, sex, and socioeconomic status. Selected cases and their parents were administered using PedsQL 4.0 India/Hindi questionnaire to assess QOL and modified Kuppuswamy scale to assess socioeconomic status. Results: Almost half of the thalassemic adolescents, i.e., 51.4% had poor QOL, whereas 48.6% of adolescents in control group had high QOL. There was no statistically significant association between QOL and socioeconomic status in both groups. It was observed that the difference between QOL and socioeconomic class though not significant but was more pronounced in study group (P = 0.114) than control group (P = 0.594). The receiver operating characteristic curve for QOL parameters indicated that social domain was the major contributor to poor QOL in thalassemics. Conclusion: Our study showed that thalassemic adolescents had significantly poor QOL, social domain being the major contributor as compared to nonthalassemics. We propose that provision of subsidized organized care can negate the impact of poor socioeconomic status on QOL of thalassemics.

Keywords: Quality of life, socioeconomic status, thalassemia


How to cite this article:
Grewal NK, Sodhi C, Sobti P. To study the quality of life and its relation with socioeconomic status in thalassemic adolescents in a tertiary care center. CHRISMED J Health Res 2017;4:33-7

How to cite this URL:
Grewal NK, Sodhi C, Sobti P. To study the quality of life and its relation with socioeconomic status in thalassemic adolescents in a tertiary care center. CHRISMED J Health Res [serial online] 2017 [cited 2019 Jul 22];4:33-7. Available from: http://www.cjhr.org/text.asp?2017/4/1/33/196062


  Introduction Top


Thalassemia is a chronic disease wherein treatment may be "prolonged, unpleasant, with repeated blood transfusions and several medications, thereby significantly affecting quality of life (QOL)." [1]

The mainstay of treatment in thalassemics is regular blood transfusions teamed up and iron chelation therapy. The ultimate cure for thalassemics is bone marrow transplant which is beyond the scope of majority of patients, especially in the Indian subcontinent because of its extremely high cost. Hence, it seems that QOL of a thalassemic is affected by his/her socioeconomic class.

Shaligram et al. [2] in an analytical study observed that 74% of thalassemic children have poor QOL. In a cross-sectional study by Ayoub et al., [3] thalassemic adolescents were tested on health status scales. Significantly, lower scores were observed in families with low income. Hence, this study provides substantial evidence that there is a relationship between QOL and socioeconomic status in thalassemics although it did not primarily focus on correlation of QOL with the socioeconomic status.

Thus, we proposed to evaluate QOL of adolescents diagnosed with β thalassemia major and its association with their socioeconomic status and to further compare these two parameters between thalassemic and nonthalassemic adolescents.


  Materials and methods Top


This qualitative comparative cross-sectional study from prevalidated questionnaire was conducted in the day care center, pediatric medicine ward, and pediatric outpatient department of a tertiary care center.

This study included 70 subjects, 35 each in study and control groups.

We recruited adolescents diagnosed with β thalassemia major in the age group of 10-18 years and their parents seeking services at the pediatric department of our hospital using simple random sampling technique as our study group. Patients who were not willing to participate in the study, those with any other comorbidity, and adolescents who underwent a bone marrow transplant were not included in this study.

For the control group, nonthalassemic adolescents in the age group of 10-18 years, matched for age, sex and socioeconomic status visiting the hospital, for minor ailments (fever, respiratory tract infection) during the period of data collection were selected. Adolescents with any major medical illness were not selected.

Written and informed consent was obtained from all the subjects and their parents.

Baseline data of all subjects were collected using semi-structured interview schedule.

Selected cases and their parents were administered using PedsQL 4.0 India/Hindi questionnaire [4] to assess their QOL and modified Kuppuswamy scale [Appendix I [Additional file 1]] to determine their socioeconomic class.

PedsQL 4.0 India/Hindi questionnaire to assess the QOL [4] included response obtained from the adolescents on four domains of physical, social, emotional, and mental functions. It is a Likert-type scale ranging from zero to four points: Never = 0, almost never = 1, sometimes = 2, often = 3, and almost always = 4.

For easy interpretation, items were reversed and scored and then linearly transformed to a 0-100 scale so that higher scores indicated better health-related QOL. This transformation of the 0-4 scale items to 0-100 has been done as follows: 0 = 100, 1 = 75, 2 = 50, 3 = 25, and 4 = 0. Score system of adolescent's QOL distribution is as follows:

  • Poor QOL: <50%
  • Neutral QOL: From 50% to <75%
  • High QOL: >75%.


Descriptive statistics were used to compute frequencies, percentages, and means and standard deviations.

Paired sample t-test and Chi-square test were used to compare different functionality scores using the SPSS statistical software version 17 (IBM Corporation).


  Observations and results Top


The demographic data and socioeconomic classes across the study and control groups were comparable [Table 1],[Table 2] and [Table 3].
Table 1: Sex distribution between both groups

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Table 2: Demographic data distribution between both groups

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Table 3: Distributions of adolescents in various socioeconomic class as per Kuppuswamy scale in both study and control group

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None of the thalassemic adolescents selected for this study had had a bone marrow transplant [Table 4].
Table 4: Percentage of thalassemic adolescents with bone marrow transplant

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More than half of the adolescents, i.e., 51.4% had poor QOL, 42.8% had neutral, and only 5.7% had high QOL; whereas, 48.6% in control group had high QOL, 28.5% had neutral, and 22.8% had poor QOL [Table 5].
Table 5: Comparison of adolescents quality of life distribution between both study and control groups

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No statistically significant association could be seen between QOL and socioeconomic status in both groups [Table 6] and [Table 7].
Table 6: Comparison between socioeconomic class and quality of life in study group

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Table 7: Comparison between socioeconomic class and quality of life in control group

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On comparison between study and control groups in reference to their QOL and socioeconomic class, we found no statistically significant difference between the two groups in this regard [Table 8].
Table 8: Comparison of quality of life and socioeconomic class between study and control group

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To further elucidate that which domain was worst among the domains assessed for determining QOL, we plotted a receiver operating characteristic curve [Table 9]. It indicated that QOL in the social domain was the worst followed by physical and emotional, and mental was the least affected [Figure 1].
Figure 1: Quality of life in the social domain is the worst followed by physical and emotional, mental is the least affected. Hence, social domain of quality of life is the major determinant towards poor quality of life in thalassemic adolescents

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Table 9: Area under the curve for quality of life parameters

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  Discussion Top


The main findings of our study indicate statistically significant poor QOL in thalassemic adolescents in comparison with the control group using PedsQL 4.0. These results are comparable to the study by Ayoub et al. [3] and Montarat et al. [5] wherein using the PedsQL 4.0 questionnaire, [4] they found QOL to be significantly lower in thalassemic children.

Furthermore, we elucidated that the social domain of QOL was the major determinant toward poor QOL. Montarat et al. reported that the psychosocial health was affected more than the physical health. [5] This is, because as thalassemia care providers, we can improve their physical QOL by regular blood transfusions and iron chelation therapy and their emotional and mental status by counseling; however, it is very difficult to change their environment, the society where they live; therefore, the social domain suffers the most.

Statistically, no significant correlation between QOL and socioeconomic class in both study and control groups was found in our study. Henceforth, we might infer that the socioeconomic class has minimal impact on QOL of thalassemics.

Our results appear in contrast to the finding of the study by Ayoub et al., [3] who concluded that QOL in thalassemic adolescents is affected by family income.

Our findings here need to be comprehended in the light of the fact that this study was done in an organized and dedicated thalassemic unit of a tertiary care hospital, wherein all thalassemic patients get subsidized treatment and comprehensive care.

The study has certain limitations: Like the confounding factors which could vary from adolescent to adolescent, for example, their family history [substance abuse, mental illness in the family] which could adversely affect the QOL are not considered due to lack of time. There is disparity in the number of adolescents in high QOL in study and control groups. Hence, the comparison of high QOL with socioeconomic status between study and control groups was not significant. We advocate larger sample size, inclusion of confounding factors as mentioned above, and exploration of social domain, to overcome the limitations of our study and improving the status of thalassemia care in India.


  Conclusion Top


Our study showed that thalassemic adolescents had significantly poor QOL as compared to nonthalassemics and the social domain was the major contributor. There was no significant association between QOL and socioeconomic status of thalassemics in our study; this could be due to provision of subsidized organized systematic care.

Financial support and sponsorship

This study has been approved and funded by the Indian Council of Medical Research under its Short-term Studentship Program.

Conflicts of interest

There are no conflicts of interest.

 
  References Top

1.
Khairkar P, Malhotra S, Marwaha R. Growing up with the families of ß-thalassaemia major using an accelerated longitudinal design. Indian J Med Res 2010;132:428-37.  Back to cited text no. 1
[PUBMED]  Medknow Journal  
2.
Shaligram D, Girimaji SC, Chaturvedi SK. Quality of life issues in caregivers of youngsters with thalassemia. Indian J Pediatr 2007;74:275-8.  Back to cited text no. 2
    
3.
Ayoub MD, Radi SA, Azab AM, Abulaban AA, Balkhoyor AH, Bedair SW, et al. Quality of life among children with beta-thalassemia major treated in Western Saudi Arabia. Saudi Med J 2013;34:1281-6.  Back to cited text no. 3
    
4.
Varni JW. Pediatric Quality of Life Inventory (Peds QL); 1998. Available from: http://www.pedsql.org/. [Last cited on 2008 Jun 06].  Back to cited text no. 4
    
5.
Thavorncharoensap M, Torcharus K, Nuchprayoon I, Riewpaiboon A, Indaratna K, Ubol BO. Factors affecting health-related quality of life in Thai children with thalassemia. BMC Blood Disord 2010;10:1.  Back to cited text no. 5
    


    Figures

  [Figure 1]
 
 
    Tables

  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7], [Table 8], [Table 9]



 

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Abstract
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