Journal Article

Economic Burden of Thalassemia on Parents of Thalassemic Children: A Multi-Centre Study

Ali, Zahra, Taseer, Ijaz-ul-Haque, Bashir, Faiza, Firdous, Rukhsana, Safdar, Sohail, Sheikh, Muhammad Aslam, Akhtar, Tasleem, Mirbahar, Ahsanullah, Mustafa, Ayaz

2017

Overview

To determine the economic burden of thalassemia on parents of thalassemic children. Descriptive nonprobability, purposive sampling done in PHRC Research Centres of Multan, Lahore, Islamabad, Karachi, Peshawar and Quetta from July 2013 to June 2014. After taking informed written consent, parents/guardians of thalassemia major children were interviewed. All information was recorded on the pre-tested questionnaire. Data was entered and analyzed using SPSS version 11. A total of 600 guardians/ parents of the thalassemic children were included in the study. There were 57% boys and 43% girls with a mean age of 9.40 + 5.66 years. Among them, 47.8% were from rural and 52.2% from urban areas. Almost 71% children were transfusion dependent. The family history of cousin/interfamilial marriage was present in 78.2% while parental consanguinity was present in 72.8%. Only 1.7% parents got premarital screening for thalassemia. In private sector 56.8% had to pay nothing while others had to pay from Rs. 500 to Rs. 2000 per visit. Expenditure per month in private thalassemia centres showed that 57% had to bear no cost at all, 12.2% had to spend up to Rs. 1000, while 24.8% Rs. 1001 to 5000 and 6% had to pay more than Rs. 5000. In the government sector cost per visit in 35.5% was up to Rs. 500 while others had to pay between Rs. 501 to more than Rs. 2000. Monthly cost at government sector almost doubled. Total expenditure (private and government sector) per month was Rs. 9626 for each patient. Total cost (both direct and indirect) for the management of thalassemia was quite high and this cost puts significant economic burden on the affected thalassemic families. This disease puts social, financial and psychological impacts on suffering families, so prevention-based strategies like premarital screening, prenatal diagnosis and genetic counseling should be adopted in Pakistan. A national screening project for thalassemia is the need of the day.

• Publisher: Knowledge Bylanes,Pakistan Medical Research Council
• Subject: Analysis / Children / Developing countries / Disease prevention / Economic aspects / Expenditures / Families & family life / Genetic counseling / Genetic disorders / Health aspects / LDCs / Mutation / Parents & parenting / Patients / Public health / Quality of life / Risk factors / Socioeconomic factors / Studies / Surveys / Thalassemia