Knowledge, Attitude and Practices of Parents of Thalassemic Children in District Patiala, Punjab, India

Knowledge, Attitude and Practices of Parents of Thalassemic Children in District Patiala, Punjab, India Singh G.1, Mitra Y.2*, Kaur K.3, Bhardwaj K.4 DOI: https://doi.org/10.17511/ijphr.2019.i1.04 1 Gurmeet Singh, Professor, Blood Bank, Government Medical College, Patiala, Punjab, India. 2* Yash Mitra, Assistant Professor, Department of Community Medicine, Punjab Institute of Medical Sciences, Jalandhar, Punjab, India. 3 Kamaldeep Kaur, Medical Officer under DHS, Blood Bank, Government Medical College, Patiala, Punjab, India. 4 Kanchan Bhardwaj, Professor and Head, Blood Bank, Government Medical College, Patiala, Punjab, India.

Only definitive therapy available for thalassemia major which gives permanent cure is bone marrow transplantation, which is available at very few centres and cost is very high and is about 50,000 USD in developing countries [3].
It has been estimated that more than 1,00,000   Surgical Procedure: During the period of study, surgical procedure was adopted for Spleenectomy.

Results
The key findings of the study as below:   Table 2 shows that 43% were from rural area and 57% patients were from urban areas. 66% patients were males and 34% were females.  Table 3 depicts that Age diagnosis was 0-6 months in 63% of cases, 7-12 months in 27% of cases and 10% cases were diagnosed between 1-3 years of age. 100% of the patients were diagnosed within 3 years of age.    Table 5 shows that 41% of the parents knew that thalassemia is a blood disorder, 84% knew that it's a genetic disorder, 26% of the parents knew that Knowledge of the parents regarding importance of ferritin levels (p=.002), role of chelation therapy (P=.018) and bone marrow transplantation (p=.033) was significantly related to the age of the patient.
Significant difference was found in the knowledge of parents in relation to geographical area. Knowledge regarding the disease and treatment option was more in parents from urban area.      Maximum number of patients whose growth was affected was from low socio-economic status, Effect on studies due to disease was more on patients from rural areas. Temper tantrums were present in more number of male patients.  [12].
In our study 25% of the children were in age group 0-4 years, 34% in 5-9 years, 28% were in 10-14 Difference in attitude is not statistically significant in relation to their communities.  In our study, 43% of the patients were from rural area and 57% were from urban areas. There is no study available in literature to make geographical distribution wise comparison. (Table 2) A study conducted by Upadhyay and Chatterjee (2009) shows similar results where 80% of the patients were diagnosed by the age of 3 year. This shows that maximum number of patients of thalassemia major became symptomatic in infancy and the rest in 1st 3 years of life. (Table 3) [14].
In our study, family history of thalassemia was present in 23% of the cases and history of consanguineous marriages was present in 4% of the cases. Naseri et al (1997) in their study on status of thalassemia in Iran also reported that 66% of thalassemic children had consanguineous parents. The difference being due to the fact that consanguinity is high in Muslims. (Table 4) [15].
In our study 76% of the parents knew about prenatal diagnosis. This is in concordance with study done by Ishak et al (2012) which reported that 76.5% parents knew about prenatal diagnosis [13].
In our study 51% of the parents knew that this disease is manageable. 77% of parents knew that blood transfusion is needed for growth of the child and to maintain hemoglobin levels and 61% of the parents knew the role of ferritin levels. Sixty of the parents knew role of chelation therapy, 43% knew the option of deferiprone (Kelfer). (Table 5) In this study majority of the parents belonged to middle class. This finding is not in concordance with a study done by Arif et al (2008) where majority of the parents were from low socioeconomic status[7].
In the present study 32% of the parents underwent prenatal diagnosis.Similar results were found in study done by Shukar et al (2011) [10].
In this study 92% of the parents were willing for abortion of thalassemia affected pregnancy. Similar results were shown in studies of Ahmad (2007) where majority of the parents and Karimi et al (2010) where 86.7% of the parents were in favor of termination of the affected foetus.
In our study majority of the parents were willing for termination of pregnancy with affected fetus Because of poor outcome and prognosis and in those who were not willing for abortion the reason was emotional and religious in majority of them [16] [17].  (2003) reported that education of 60% of thalassemic children of school age was affected. 82% of the parents had anxiety [18].
The recent emergence of oral iron chelation therapy (with deferiprone) has helped to lessen the burden of desferrioxamine infusion and thus is improving compliance Zahed et al (2002). (Table 9) [19].

Conclusion
The following conclusions are drawn regarding the present study:-Prenatal diagnosis.

Contribution by Co-Authors
Dr. Gurmeet and Dr. Kamaldeep Kaur conceived the idea of this study, guided the design, data collection and analysis, and wrote the initial draft of this paper. All the three contributed to the design, data collection and analysis. Dr. Kamaldeep Kaur with the help of Dr. Gurmeet Singh and Dr. Kanchan Bhardwaj contributed to data collection and analysis. Dr. Yash Mitra along with the author and co-authors contributed to the idea original article, and helped in corresponding the various activities to complete the article. All authors read and approved the final manuscript.

What this Study adds to the Existing Knowledge
It is evident from this study that thalassemic disease affects the psycho-social dimensions of the patient, family, community and leads to increase in the budget of the family as well as government to provide the treatment for the disease as well as psychosocial problems of the patient as a whole.
Therefore, more structural and long-term psychosocial support in all of the above said aspects is needed to improve the quality of life of the patients suffering from thalassemic disease.

Singh G. et al: Knowledge, Attitude and Practices of Parents
There should be a community based educational efforts to increase awareness of this problem especially to the people from low socioeconomic class and from rural area.
Organizing regular awareness programmes and genetic counseling among high risk communities to inform them the salient facts about thalassemia, its hereditary nature, treatment and preventive possibilities is required.
involvement of mass media is needed to achieve this goal.
Premarital screening programmes aimed at identifying carrier individuals before marriages may be more effective and culturally acceptable among our communities as compared to It is evident from this study that thalassemia affects the psychosocial dimensions hence a more structural long term psychosocial support is needed to improve quality of life of patients. Public Health Review -International Journal of Public Health Research 2019;6(1)