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| ORIGINAL ARTICLE |
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| Year : 2022 | Volume
: 13
| Issue : 2 | Page : 76-80 |
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Health-related quality of life of parents of children with beta-thalassemia major attending a tertiary care institution in Eastern India
Archi Chandra1, Sarmila Mallik2, Soma Chakrabarti3, Nabanita Bhattacharyya4
1 Department of Community Medicine, Prafulla Chandra Sen Government Medical College and Hospital, Arambagh, West Bengal, India
2 Department of Community Medicine, North Bengal Medical College, Kolkata, West Bengal, India
3 Department of Community Medicine, IPGMER and SSKM Hospital, Kolkata, West Bengal, India
4 Department of Community Medicine, Calcutta National Medical College, Kolkata, West Bengal, India
| Date of Submission | 15-Sep-2022 |
| Date of Acceptance | 27-Oct-2022 |
| Date of Web Publication | 10-Jan-2023 |
Correspondence Address:
Dr. Soma Chakrabarti
Department of Community Medicine, IPGMER and SSKM Hospital, Kolkata, West Bengal
India
 Source of Support: None, Conflict of Interest: None  | Check |
DOI: 10.4103/mjmsr.mjmsr_56_22
Context: Chronic diseases such as beta-thalassemia major among children impact their parents in various ways, as they face continuous stress and strain while striving to provide their children with a best possible care. Literature related to health-related quality of life (HRQoL) among parents of children with beta-thalassemia major are limited among Indian population. Aims: This study aimed to assess the HRQoL of parents of children with beta-thalassemia major attending a tertiary care institution in Eastern India and its various correlates. Settings and Design: This cross-sectional study was conducted at a tertiary care institution in Eastern India. Materials and Methods: A sample size of 192 was selected using the simple random sampling among parents with children suffering from beta-thalassemia major who fulfilled the inclusion criteria. Study participants were interviewed regarding different variables and their HRQoL, using a predesigned, pretested, and semi-structured schedule and the Short Form 36 Health survey, respectively, after obtaining ethical clearance from the Institutional Ethics Committee and informed consent from them. Statistical Analysis Used: Data were entered in MS Excel and analyzed using IBM SPSS 20.0 version (Armonk, NY: IBM Corp). Results: The mean HRQoL score was found to be 38.7 ± 11.3 with an interquartile range of 23–59.7. The Spearman's rho correlation matrix showed that HRQol of parents is weakly positively correlated with the educational status of the father of the child (r = 0.2), educational status of the mother of the child (r = 0.1), family history of thalassemia (r = 0.2), ongoing treatment (r = 0.1), and duration of blood transfusion (r = 0.2). Conclusions: Hence, we can conclude that HRQoL of parents of beta-thalassemia major children was correlated with the educational status of the father and mother, family history of thalassemia, ongoing treatment, and duration of blood transfusion.
Keywords: Beta-thalassemia major, health-related quality of life, parents
How to cite this article:
Chandra A, Mallik S, Chakrabarti S, Bhattacharyya N. Health-related quality of life of parents of children with beta-thalassemia major attending a tertiary care institution in Eastern India. Muller J Med Sci Res 2022;13:76-80 |
How to cite this URL:
Chandra A, Mallik S, Chakrabarti S, Bhattacharyya N. Health-related quality of life of parents of children with beta-thalassemia major attending a tertiary care institution in Eastern India. Muller J Med Sci Res [serial online] 2022 [cited 2023 Jun 2];13:76-80. Available from: https://www.mjmsr.net/text.asp?2022/13/2/76/367413 |
| Introduction | |  |
The concept of health-related quality of life (HRQoL) encompasses those aspects of overall quality of life that can be clearly shown to affect health, either physical or mental; HRQoL is an important component of public health surveillance and is considered a valid indicator of unmet needs and interventional outcomes.[1] It helps in identifying relatively poor perceived heath and to guide interventions to improve their situations and avert serious consequences.[1]
Chronic diseases such as beta-thalassemia major among children affect their parents both physically and mentally due to regular blood transfusion, iron chelation therapy, frequent hospitalization, medical follow-up, travelling cost, and absence from work. HRQoL of parents is hampered depending on the severity of the disease and ongoing treatment, as these children are dependent on them.
Parents of the children with beta-thalassemia major are prone to physical, psychological, and social distress. Correspondingly, this affects the parent's ability to take care of their children and with all household chores to do. Extensive research on the therapeutic aspects of thalassemia is evident among the Indian population, but studies exploring HRQoL and its determinants despite being important are very few.[2] Interpretation of HRQoL helps determine the disease burden and plan interventions to improve the situation.[1] With this backdrop, the need to assess the HRQoL of parents of children with beta-thalassemia major and its various correlates was strongly felt; thus, this study was conducted to assess the HRQoL of parents of children with beta-thalassemia major attending a tertiary care institution in Eastern India and its various correlates.
| Materials and Methods | | |
Study design, population, and duration
An observational, cross-sectional study was conducted among parents of children suffering from beta-thalassemia major registered in thalassemia unit under the department of pediatrics of a tertiary care institution in Eastern India. The study duration was 1 year from May 2019 to April 2020.
Inclusion and exclusion criteria
Our inclusion criteria were as follows: parents of children suffering from beta-thalassemia major registered in the thalassemia unit under the department of pediatrics of a tertiary care institution in Eastern India, parents whose children have received blood transfusions from that tertiary care institution only, who gave an informed consent for participation in the study, whereas parents having children with beta-thalassemia major who were seriously ill and parents who were suffering from chronic physical or any psychiatric disorder were excluded from the study.
Sample size
The sample size was determined by the footfall count estimation technique. Every day, nearly 20 children were admitted in the thalassemia unit for receiving blood transfusions. It was convenient to interview two samples each day. We had 2 days a week (alternatively) for 12-month-period for the data collection, total 96 days of data collection; hence, the sample size obtained was 96 × 2 = 192 parents of children suffering from beta-thalassemia.
Sampling technique
Bed numbers of children in the thalassemia unit who fulfilled the inclusion criteria were written serially; among them, two samples were selected by the simple random sampling using the random number table every day for the data collection. Repetition was avoided.
Schedule preparation
According to the context and objectives of the study, the schedule was prepared. The schedule consisted of sociodemography (age of child, gender of child, educational status of father and mother of child, residence, type of family, and number of living children), socioeconomy (occupation of father and mother of child, socioeconomic status calculated by The modified BG Prasad Scale 2020), and clinico-therapeutic (family history of thalassemia, duration of blood transfusion, ongoing treatment including blood transfusions, iron chelation therapy, and spleen status). Pretesting of the schedule was done among a small number of representative individuals, but they were not included in the study. Thereafter, the schedule was finalized after making necessary corrections.
The short form-36 health survey version 2.0
The Short Form-36 Health Survey (SF-36) version 2.0 is designed to assess HRQoL of the individuals. It has eight domains:– (1) Physical functioning, (2) role limitations due to physical health, (3) role limitations due to emotional problems, (4) energy/fatigue, (5) emotional well-being, (6) social functioning, (7) pain, and (8) general health. SF-36 consists of eight scaled scores, which are the weighted sums of the questions in their section. Each scale is directly transformed into a 0–100 scale on the assumption that each question carries equal weight. The lower the score, the more the disability; the higher the score, the less the disability, i.e., a score of zero is equivalent to the maximum disability and a score of 100 is equivalent to no disability. All questions are scored on a scale from 0 to 100, with 100 representing the highest level of functioning possible. This is a two-step process: (i) First, precoded numeric values are recorded per the scoring key (ii) In step 2, items in the same scale are averaged together to create 8 scale scores. Items that are left blank are not taken into account when calculating the scale scores. The physical HRQoL score is calculated from the mean of physical function, role limitation due to physical health, pain, and general health total score. The mental HRQoL score is calculated from the mean of emotional health, energy/fatigue, emotional well-being, and social function total score. From the mean of the physical and mental HRQoL score, we get the total score of individual's HRQoL.[3]
Ethical clearance and informed consent
Ethical clearance was obtained from the Institutional Ethics Committee. Informed consent from the study participants was obtained after they were fully explained about the study and its procedure; that they can withdraw any time from the study and it won't affect their child's treatment receival from the hospital, whom they should contact during emergency, and were assured that the data provided by them would be kept confidential and anonymous in their local language.
Data collection procedure
Data collection was done with the help of a predesigned, pretested, and semi-structured schedule by interviewing the study participants regarding their sociodemographic and socioeconomic profile. Data regarding clinico-therapeutic profile were collected both by interviewing the study participants and reviewing the existing records of patient (data about ongoing treatment). HRQoL was assessed using the SF-36 Health Survey.
Statistical analysis
Data collected were entered in MS Excel and analyzed using IBM SPSS 20.0 version (Armonk, NY, USA: IBM Corp). Descriptive statistics were calculated as frequencies, percentages, mean, and SD. Descriptive data were represented using the various tables.
Bivariate analysis was done using the Spearman's rho correlation coefficient between HRQoL of parents and different variables.
| Results | | |
In this study, the mean age of children with beta-thalassemia major was 6.4 ± 3.54 years. 67.7% of children were male. Most (68.8%) of the study participants resided in urban area. 15.6% of fathers were unskilled worker and majority (91.7%) of the mothers were homemakers. 52.6% of them belong to socioeconomic status III (Modified BG Prasad Scale 2020). More than half (56.2%) were from joint family. 49.4% of fathers had primary level of education or less, whereas only 37% of mothers had primary level of education or less. 91.1% of the parents had only one living child [Table 1]. | Table 1: Distribution of the study participants according to their sociodemographic profile (n=192)
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20.3% had a family history of thalassemia. 90.1% of the children received blood transfusion with other modalities (among them, six [3.1%] had splenectomy and 173 [90.1%] were taking iron chelation therapy). Three-fifth (60.9%) of the children with beta-thalassemia major received blood transfusion for more than 5 years [Table 2]. | Table 2: Distribution of the study participants according to clinico-therapeutic profile of their children (n=192)
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The mean physical HRQoL score was 46.7 ± 33.6, whereas the mean mental HRQoL score was 30.7 ± 2.0 [Table 3] and [Table 4]. Again, the mean HRQoL total score was found to be 38.7 ± 11.3 [Table 5] with an interquartile range of 23–59.7. | Table 3: The mean score of various domains of the Short Form-36 Health Survey related to physical health-related quality of life (n=192)
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 | Table 4: The mean score of various domains of the Short Form-36 Health Survey related to mental health-related quality of life (n=192)
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 | Table 5: The mean score of major health-related quality of life domains of the Short Form-36 Health Survey (n=192)
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The Spearman's rho correlation matrix showed that the HRQol of parents is weakly positively correlated with the educational status of the father of the child (r = 0.2), educational status of the mother of the child (r = 0.1), family history of thalassemia (r = 0.2), ongoing treatment (r = 0.1), and duration of blood transfusion (r = 0.2), which indicates that the HRQoL of parents improves with a higher educational status of the father and mother of child, no family history of thalassemia, ongoing treatment (blood transfusion with other modalities such as iron chelation and splenectomy), and less duration of blood transfusion [Table 6]. | Table 6: The Spearman's rho correlation matrix showing various correlates of health-related quality of life of the study participants (n=192)
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| Discussion | | |
Parents of children suffering from beta-thalassemia major are exposed to stress and strain psychologically, physically as well as financially. This study was aimed to assess the HRQoL of parents of children with beta-thalassemia major and to find out various factors affecting it.
Our study found that the mean physical HRQoL score was 46.7 ± 33.6, whereas the mean mental HRQoL score was 30.7 ± 2.0 and the mean HRQoL total score was 38.7 ± 11.3. Similar picture was reflected in other studies; Bandari K et al. conducted a study in the sub-Himalayan district of West Bengal showed that the mental QOL is more affected than the physical QOL in caregivers of beta-thalassemia major children.[4] Pruthi, in a study in Delhi, observed that parents of children with thalassemia had a mean physical QOL of 40.8 ± 9.9 and mean mental QOL of 36.6 ± 7.3.[5]
In this study, 20.3% had a family history of thalassemia, in accordance with other studies 22.2%,[6] 24%,[7] and 28.6%.[8] Again, it was observed that among children suffering from beta-thalassemia major, six (3.1%) underwent splenectomy resembling similarity to studies, where six (2.8%) had a splenectomy.[9] 90.1% of the beta-thalassemic children received iron chelation with blood transfusions similar to other studies where 69.4%[8] and 92.4%.[10] Our study showed that the three-fifth (60.9%) of children with beta-thalassemia major received blood transfusion for more than 5 years in accordance with other study, where 74% had a history of blood transfusion for more than 5 years.[7]
Furthermore, it was seen that the educational status of the father and mother of the child, family history of thalassemia, ongoing treatment, and duration of blood transfusion were significant predictors of HRQoL of parents similar to other studies, where caregiver's educational status[2],[4],[11] and higher number of blood transfusion[2] were associated with a poorer quality of life.
Limitations
As this is a cross-sectional study, there are the chances of recall bias in some instances, such as in case of family history of thalassemia. Due to resource constrains, this study could not be done in a more elaborative way to find out various other factors related to HRQoL of parents.
| Conclusions | | |
The health-related quality of Life of parents of beta-thalassemia major children is mostly hampered in parents with lower educational status of the father and mother of the child, family history of thalassemia, ongoing treatment without modalities such as iron chelation, splenectomy, and more duration of blood transfusion. However, the results of this study can contribute to promote a better HRQoL for parents of beta-thalassemia major children, by understanding their needs and managing the factors affecting.
Acknowledgment
We would like to express our gratitude toward the parents of the study participants for their support and cooperation.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
| References | | |
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6]
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