|Year : 2022 | Volume
| Issue : 1 | Page : 62-68
Screening before marriage is important: A cross-sectional study on thalassemia among eligible couples from a slum of Kolkata
Vineeta Shukla, Tushar Kanti Mondal, Kuntala Ray, Sinjita Dutta, Murari Mohan Mandal, Mausumi Basu
Department of Community Medicine, Institute of Post Graduate Medical Education and Research and SSKM Hospital, Kolkata, West Bengal, India
|Date of Submission||28-Sep-2020|
|Date of Decision||29-Sep-2020|
|Date of Acceptance||02-Dec-2020|
|Date of Web Publication||19-May-2021|
Department of Community Medicine, Institute of Post Graduate Medical Education and Research and SSKM Hospital, Kolkata, West Bengal
Source of Support: None, Conflict of Interest: None
Introduction: Thalassemia is the most common single gene disorder globally and has high burden in India. Education to eligible couples about the risk of conceiving a child with thalassemia is important for its prevention as well as for reducing psychosocial impact on them and improving family health. Objectives: To assess the knowledge, attitude, and practice regarding thalassemia among eligible couples residing in a slum of Kolkata and to find out the determinants of inadequate knowledge, negative attitude, and bad practice among them. Materials and Methods: A descriptive cross-sectional study was carried out in a slum in Kolkata, from October-December 2019 among 300 study population using a pre designed, pretested structured schedule by face-to-face interview method. All statistical analyses were conducted using SPSS version 16.0 and correlation of variables was seen using Pearson's Chi Square Test and Odds Ratio. Results: About 53.33% of the study population had adequate knowledge; 50.33% had positive attitude but only 9.67% had good practice. Conclusion: Eligible couples lack adequate knowledge on thalassemia; their attitude was positive but practice was bad. Significant determinants of inadequate knowledge were female gender, level of education and socio-economic status; of negative attitude-religion, level of education and socio-economic status whereas of bad practice – age, level of education and socio-economic status.
Keywords: Attitude, eligible couple, knowledge, practice, thalassemia
|How to cite this article:|
Shukla V, Mondal TK, Ray K, Dutta S, Mandal MM, Basu M. Screening before marriage is important: A cross-sectional study on thalassemia among eligible couples from a slum of Kolkata. Med J DY Patil Vidyapeeth 2022;15:62-8
|How to cite this URL:|
Shukla V, Mondal TK, Ray K, Dutta S, Mandal MM, Basu M. Screening before marriage is important: A cross-sectional study on thalassemia among eligible couples from a slum of Kolkata. Med J DY Patil Vidyapeeth [serial online] 2022 [cited 2022 Jan 29];15:62-8. Available from: https://www.mjdrdypv.org/text.asp?2022/15/1/62/316420
| Introduction|| |
Thalassemia is an inherited condition that affects hemoglobin. β-thalassemia is the most common autosomal recessive genetic disorder in India. India has a huge burden with an estimated 100,000 patients with β-thalassemia syndrome. The average prevalence of thalassemia carriers is 3%–4% which translates to 35–45 million carriers in our ethnically and culturally diverse population. In India, it is common in Maharashtra, Gujarat, West Bengal, Karnataka, Punjab and Assam. Communities such as Sindhis, Bhanushalis from Kutch region, Lohanas from Gujarat, Aroras and Khatris from Punjab, Bengalis, Muslims like Memons and Shiyas and some tribal populations from Orissa and Gujarat have much higher prevalence rates of β-thalassemia and have higher awareness regarding thalassemia than other low-risk communities. People with thalassemia produce either no or too little hemoglobin which can make them very anemic. A carrier of thalassemia usually shows no symptoms except mild anemia but is at the risk of having child with thalassemia. If both parents are carriers there is 25% risk of their child having thalassemia major in every pregnancy. In a study in rural West Bengal in 2011, the carrier rate for β-thalassemia was shown to be around 10.38% in general population. In a 10-year prospective study conducted in West Bengal, β-thalassemia trait was the most common abnormality found in 4.60% patients and thalassemia major/intermedia in 1.66% cases.
Studies have shown that parents of Thalassemic children are more aware of the disease than others. In a study by Singh et al. in Punjab, knowledge regarding the treatment options was found more in parents from Bania, Khatri and Kamboj communities. In another study by Saxena et al. in Mumbai, about 47.5% of parents were aware of thalassemia being a genetic disease and about 62.5% understood the need and advantages of regular blood transfusion.
Premarital screening, comprehensive genetic counseling and prenatal diagnosis have been advocated by many physicians and hematologists in India as preventive strategies. Education to couples on risk on having a child with thalassemia is important for its prevention, reducing the psychosocial burden on them and improving overall family health.
The only way to prevent the disease and reduce the morbidity and mortality is by creating awareness. Compared to the awareness of diseases such as diabetes, tuberculosis, and AIDS, most people have not even heard of thalassemia. By targeting couples through scientific intervention and involving medical community, we can hope to reduce the prevalence of thalassemia in coming years.
The West Bengal State thalassemia control program is on-going and two State run Hospitals are the nodal centers with 21 centers in different districts under these nodal centres to create awareness, screening and counseling. However, according to thalassemia International Federation, West Bengal has nearly one third thalassemia children in India probably due to gap in awareness creation.
Although some studies in India and abroad have documented thalassemia knowledge, attitude, and practices (KAPs) among different population groups; still there is dearth of awareness about this topic in India, especially in this part of the country.
With this background, the present study was conducted among the eligible couples residing in a slum of Kolkata to assess their knowledge, attitude, and practice regarding thalassemia and to find out the determinants of inadequate knowledge, negative attitude, and bad practice among them.
| Materials and Methods|| |
Study type, area, duration, and population selection
A community-based descriptive observational study, cross-sectional in design, was conducted in the urban field practice area of Institute of Post Graduate Medical Education and Research-SSKM Hospital (IPGME&R) -SSKM located at Urban Primary Health Centre (UPHC)-81, Borough X at 16, Mondol Temple Lane, Kolkata-53 over a period of 12 weeks (October-December 2019). Entry condition were the eligible couples residing in the slum adjoining the UPHC, for 5 years or more (duration of family residence taken if marriage <5 years). Couples who did not give informed written consent were excluded.
Sample size calculation and sampling technique
Taking proportion of adequate knowledge P as 0.58 from a study, q = 1-p, α = 0.05, confidence interval = 95% and relative error L = 10%, Sample size was calculated using formula = (Zα2 pq)/(Lp)2 = ([1.96]2 × 0.58 × 0.42)/(0.1 × 0.58)2 = 284. After adding 5% nonresponse, total sample size was taken as 300. From the family folders maintained at the UPHC, a line list of eligible couples was prepared and the required sample size was achieved by simple random sampling.
Study tool, study variables, and operational definitions
For the purpose of data collection, a pre-designed, pre-tested structured schedule was prepared which was translated in both Bengali and Hindi (local language). It was designed by a research team, including a physician, a professor of Community Medicine and a hematologist with history of practice in thalassemia ward. The schedule was piloted among 30 randomly selected study population of the same setting to assess its clarity, reliability and validity. After some minor modifications, the schedule was re-evaluated by the same panel of experts. The participants who were included in the pilot study were not included in the final study sample. The content and construct validity of the schedule were investigated by a research team and its reliability was confirmed by Cronbach's alpha test. Based on this test, all questions' reliability was higher than 78% and validity was higher than 80%.
The study variables were broadly Dependent variables (knowledge, attitude, and practice) and Independent variables (socio-demographic characteristics such as age, gender, religion, level of education, occupation, and socio-economic status). The operational definitions were as follows:
- Eligible couple: Currently married couple where the wife is in the reproductive age group (15–49 years)
- Thalassemia carrier: People who have thalassemia trait carry the genetic trait for thalassemia but do not usually experience any symptoms except mild anemia
- Premarital counseling: Educational and supportive advice given to people planning marriage by a person skilled in counseling, a therapy professional, or some other skilled individual
- Prenatal diagnosis: It is a diagnostic test for pregnant women done when there is a chance that the baby could be carrying the gene for thalassemia. The mother is counseled to discuss whether she wants to have a test for the unborn baby to find out whether he/she has thalassemia or not and of which type.
Study technique and method of data collection
The selected couples were visited personally at their houses. After giving a brief introduction about the study and its importance, their informed written consent was taken. Data were then collected taking either the husband or wife as respondent by face-to-face interview method.
The forms were checked for completeness. Data were tabulated into Microsoft Excel 2010 (Microsoft Corp, Redmond, WA, USA) and then imported to Statistical Package for the Social Sciences (SPSS for Windows, version 16.0, SPSS Inc., Chicago, USA) for interpretation and analysis. Descriptive and Inferential Statistics for study variables were performed.
Knowledge was assessed on 14 questions. Each correct response was scored one while incorrect/do not know was scored zero. Range of knowledge score was zero to fourteen. Adequate knowledge was score ≥1 (Median score).
For attitude out of 10 items positive response was given a score of two, neutral one and negative zero. Therefore, the range of score was zero to twenty. Those having median score ≥13 were said to have positive attitude.
Practice was evaluated on 2 items. A score of ≥1 denoted good practice.
Pearson's Chi-square test was performed taking knowledge, attitude, and practice as dependent variables and socio-demographic characteristics of the study population as independent variables. For cells having expected value <5, Fisher's exact test value was noted. A P < 0.05 was considered statistically significant. Then, odds ratio with 95% Confidence Intervals were calculated for various socio-demographic variables. A P < 0.05 was interpreted as significant.
Ethics committee approval
Approval from Institutional Ethics Committee was taken (Institutional Ethics Committee, IPGME&R, Research Oversight Committee, Letter Number: IPGME&R/IEC/2019/CM-595 Date December 26, 19).
| Results|| |
Out of 300 study population, 101 (33.67%) were male and 199 (66.33%) were female. Mean age of the respondents was 35.1 ± 9.4 years and Median age was 35 years with a range of 17–60 years. Mean duration of marriage was 13.8 ± 9.4 years and Median was 12 years. About 92% of the respondents were Hindus, 7% were Muslims while 1% were Christians. Regarding education, 12.33% were illiterate, 16% completed primary education, 45.34% secondary passed, 13% higher secondary while 13.33% were graduates and above. Among the respondents, so far occupation was concerned, about 49.00% were homemakers, 15.33% were involved in business, 8.00% were in service, 19.67% were involved in jobs as skilled workers and 8.00% had jobs requiring unskilled work. As per Modified BG Prasad Scale of January 2019, about 35% belonged to Class IV while 5.33% to Class I, 20.00% to Class II, 24.33% to Class III and 15.33% to Class V.
[Figure 1] shows distribution of the study population according to their knowledge, attitude and practice scores. About 160 (53.33%) of the study population had adequate knowledge, 151 (50.33%) had positive attitude and only 29 (9.67%) had good practice.
About 27.33% of the respondents knew thalassemia is heritable while only 14.33% were aware of thalassemia carrier. About 40.67% said blood test was used for diagnosis and 30.33% could answer at least one symptom correctly, 14.33% answered correctly that marriage between two carriers leads to a Thalassemic child [Table 1].
|Figure 1: Knowledge, attitude, and practice of the study population regarding thalassemia (n = 300). Adequate knowledge, positive attitude, good practice = , inadequate knowledge, negative attitude, bad practice = |
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|Table 1: Distribution of study population according to adequate knowledge regarding Thalassemia (n=300)|
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[Table 2] demonstrates positive attitude and good practice of the study population. About 30.33% felt carrier couple should not have children, 41.00% were in favor of undergoing premarital screening for genetic diseases, 41.67% favored prenatal diagnosis, only 18.33% agreed to termination of pregnancy with Thalassemic fetus, 70.00% agreed that blood donation should be encouraged and 45.00% did not agree that carrier should donate blood.
|Table 2: Distribution of study population according to positive attitude and good practice (n=300)|
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Regarding practice, about 9.67% had undergone premarital counseling/screening while only 0.67% had undergone prenatal diagnosis for thalassemia in baby.
Pearson's Chi Square Test was done between knowledge, attitude and practice of the study population regarding thalassemia with their socio-demographic characteristics [Table 3].
|Table 3: Association of inadequate knowledge, negative attitude, and bad practice with various sociodemographic variables (n=300)|
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Odds ratio calculation was done to show strength of association between inadequate knowledge, negative attitude, bad practice and socio-demographic variables [Table 4]. Significant determinants of inadequate knowledge were female gender, level of education and socio-economic status; of negative attitude were religion, level of education and socio-economic status whereas of bad practice were age, level of education and socio-economic status.
|Table 4: Odds ratio of inadequate knowledge, negative attitude and bad practice with sociodemographic variables (n=300)|
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| Discussion|| |
Thalassemia is one of the important significant public health concerns in India because of its chronic, incurable nature, heavy burden of suffering and a large financial cost.
In the present study 53.33% of the study population had adequate knowledge about Thalassemia which was almost corroborative with the findings by Basu at SSKM Hospital, Kolkata among patients who attended general outpatient department (57.9%), Ebrahim et al. in a study among general public of urban areas of Karachi, Pakistan (60%), and Pauisri et al. at Genetic Counseling Clinic of Srinagarind Hospital, Thailand among pregnant women (57.1%).
However, it was far higher than studies by Moghaddan et al. at Southeast Iran among high school students and Seyam and Assemi at Guilan, Iran among university students where only 14.7% and 12.17% had adequate knowledge about thalassemia. A study by Mudiyanse et al. at Sri Lanka among men and women at the time of giving “notice of marriage” and Ahmed et al. at Karachi among parents of β-thalassemia major children revealed that 47% and 45.8% had adequate knowledge regarding thalassemia.
About 53.33% of participants of this study recognized that thalassemia is a blood disorder, which was less than shown by Basu at Kolkata (67.52%), Srivastava et al. at rural Bengal and Wong et al. at Malaysia among multi-racial population (76.4%).
One of the most concerning finding of this study and some previous studies was that many of the respondents were unaware of the genetic nature of the disease. Our study demonstrated that 27.33% of respondents had correct knowledge about the inherited/genetic nature of the disease while the findings of Basu, Ebrahim et al., Ahmed et al., Srivastava et al., Wong et al., Ishaq et al. among parents of β-thalassemia major patients, and Hossain et al. among college students in Bangladesh were 60.05%, 40.8%, 47.8%, 28%, 69.7%, 44.6%, and 56% respectively.
Surprisingly, only 20.67% were aware that blood transfusion is required throughout life in the present study compared to 66.59% by Basu, 42.1% by Ebrahim et al., 45.3% by Ahmed et al., 47.9% by Wong et al., and 33.9% by Hajeri et al. at Bahrain among general public.
About 45% had knowledge about carrier in the study by Mudiyanse et al., 52.57% by Basu, 57% by Wong et al., 63% by Hossain et al. while it was only 14.33% in this study, 29.6% by Ebrahim et al., and 21% by Srivastava et al.
Females had better knowledge than males in our study which was in line with Iran and Bahrain but contradictory to Kolkata where males had more knowledge than females. There were twice as many females compared to males in our study, Iran and Bahrain which might make this study finding biased whereas in Kolkata males were four times more (81%) than females which explains this gender difference. Moreover, knowledge was not significantly different across gender groups in Bangladesh.
In this study and Kolkata study, no relationship was found between thalassemia knowledge and age group whereas in Bahrain study, respondents aged 60 and above and those falling in the 40–49 years of age group gave more correct answers compared to the rest of age groups.
Significant determinants of inadequate knowledge were level of education and socio-economic status in Kolkata, Thailand, Iran, and Malaysia.
In the present study, 50.33% had positive attitude toward thalassemia which was very low as compared to the findings by Basu (83.8%), Pauisri et al. (85.7%), Moghaddan et al.(78.6%), and Srivastava et al.
In answer to the question whether carrier couple should have children, 69.67% agreed to it in our study in contrast to 57.48% in Kolkata, 93% in Karachi, 66% in Pakistan, and 68.7% in Malaysia.
Blood donation should be encouraged for thalassemia patients was told by 70% in our study in contrast to 98.83% in Kolkata, 97.1% in Karachi and 60.8% in Bangladesh.
Only 18.33% agreed for opting termination of pregnancy in case of Thalassemic fetus rather than letting the child suffer in contrast with most other previous studies where it was 81.31% at Kolkata, 88% at Thailand, 74% at Pakistan, 36.6% at Malaysia, but only 2.2% at Karachi.
About 41.67% of participants had the positive attitude to have premarital testing/screening of blood for thalassemia; which was far lower than findings of Sri Lanka (82%), Kolkata (92.06%), Karachi (74%), Malaysia (90.6%), Bangladesh (88.1%), and Bahrin (77.8%).
Positive attitude was significantly associated with education and socioeconomic condition in this study, Kolkata and Iran.
Regarding practice, only 9.67% had good practice in this study which was lesser than findings by Basu (14.02%). However, it was better than findings by Ebrahim et al. which showed good practice of only 2%.
Only 9.67% had undergone premarital counseling/screening while only 0.67% had undergone prenatal diagnosis for thalassemia in this study which was lower than Sri Lanka 17%, Karachi 35.9% and Malaysia (13.6%). It indicates that thalassemia prevention is still a long way for West Bengal even when awareness and antenatal screening programs are on-going in all districts of West Bengal since several years. Low proportion of premarital counseling/screening may be due to lack of accessible and available screening programs or may be due to lower awareness. The reason for very low proportion of prenatal diagnosis may be that in that particular slum there were less number of carrier couples.
There were some limitations in our study. First, there were twice as many females compared to males which might make the study biased. In addition, it would have been better to include a younger age group to evaluate premarital education and counseling. Moreover, all the questions pertain only to thalassemia and there is no mention of Hemoglobin E -thalassemia although the latter hemoglobin disorder is particularly common in West Bengal. Hence there must be many individuals who are carriers of HbE also.
| Conclusion and Recommendations|| |
Eligible couples lack adequate knowledge on thalassemia; their attitude was positive but practice was very bad. Significant determinants of inadequate knowledge were level of education and socio-economic status; of negative attitude-religion, level of education and socio-economic status whereas of bad practice – age, level of education and socio-economic status. Awareness on thalassemia should be increased regarding its mode of transmission, symptoms and prevention through health education and community awareness programs. Increase in number of diagnostic centers which are able to perform premarital and prenatal diagnosis, and provide this facility at a subsided cost or free for the poor, and introduce quality control programs is recommended. Obstetricians should be encouraged to screen every woman at first visit for carrier status of thalassemia. As far as feasible, husband should be screened at the same time.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4]