Beta Thalassemia: A Family Affair - Exploring the Interplay Between Disease Awareness, Parental Stress, Child Well-being and Quality of Life in Karachi, Pakistan

Abstract

Objective: To assess the general public's level of disease awareness and understanding, as well as its impact
on various elements of life.
Methodology: This is a cross-sectional study. Total sample size was 275. Study duration was September 2020
–February 2021. Inclusion criteria was all men and women, either married or unmarried, above the age of
18 years, who did not work in healthcare sector and lived in Karachi, Pakistan. A standardized questionnaire
was created using Google Forms, and data was collected online. In addition, a consent form was appended
to the questionnaire. The study was given approval by the institute'sÊethicalÊreview committee. The data was
analyzed using SPSS version 25. Chi square test was used for data comparison. A p-value of <0.05 was
considered statistically significant.
Results: Out of the total study population, 81.7% were married and 17.3% were unmarried. The majority
(51.4%) were aged 18 to 22 years. A significant association was found between knowledge and quality of life
(p-value; 0.018), between the role of consanguineous marriages and disease etiology (p-value; 0.014), between
the number of units of blood transfused to the thalassemic patient in one sitting and its effect on quality of life
(p-value; 0.006), and between knowledge and the number of hospital visits for blood transfusion (p-value; 0.031).
Conclusion: The study indicated that our sample group lacked sufficient awareness regarding thalassemia
and its impact on quality of life for both the patient and the family.
Key Words: Beta-thalassemia major, consanguineous marriages, disease awareness, quality of life