Epidemiological aspect and quality of life of Children with Sickle cell disease
1Mohamed Ahmad Badr, MervatAtfy Mohammed, Nelly Raaft Abdel Fattah, Marwa Gouda Abd El Hamied Ahmed
Background:Sickle cell disease (SCD) is the most frequent genetic disease in the world. Complications like a physical, emotional and social impact on the carrier's life that can compromise their quality of life (QOL). The study aimed to assess the quality of life and epidemiological aspect of children with sickle cell disease.Methods:It was across sectional study which conducted in outpatient Clinic and Pediatric Hematological Department in Zagazig university hospital Including30 children with sickle cell anemia and their parents who fulfill the following criteria, A- age ranges from 5 to18 years. B- free from any associated diseases. We used two tools, first was: Structure interview questionnaire sheets and second: was Pediatric Quality of Life Inventory that was used to assess children's quality of life. Results:Mean age of studied children 10.65±3.41 years,66.7% of them were males. Regarding to the level of education, it was found that 46.7% of children were in primary schools, 20% of them were in preparatory school and (33.3%) in secondary school. The birth order of children was the first for 40%, the second for 33% and the third and more for 26.7%. Most of children were in the rural area73.3% and 26.7% of them were in the urban. Affected members in the family with SCD occurred in 53.3%. 63.3% had history of positive consanguinity. Characteristics of children's mothers are presenting, it was clear the mean of age was35.93±6.03 years Ranged From 21 Years And 45 years. Concerning level of education, it was noticed that nearly one third of mothers (33.3%) were illiterate, 20% of them had basic education and 20% of them had diploma. While 26.7% of mothers had high education (University). It was seen that 76.6% were housewife and 23.3% of them were working. 66.7% was SCA,20% was SC trait, and 13.3%was β thalassemia. Concerning to the clinical data as reported by studied children, it was found that the onset of illness was in the first year for 66.7% of children, while it was in the second years for 30% of them. 73.3% of the studied children had pallor and jaundice appeared in 63.3% of them.10% of them had splenomegaly while 6.7% had hepatomegaly. Concerning operations 3.3% had splenectomy and 3.3% had cholecystectomy. VOC of studied patients, 40% had mild pain, 23.3% moderate pain and 36.6 had severe pain .26.6%. of pain affected abdomen, 53.4% taking NSAID, 63.3%of studied patient did not visit pain clinic. According to assessment of QOL we found that overall QOL 36.7% were poor and 63.3% were good.Conclusion: Sickle cell disease is a chronic disease which had a negative impact on QOL that include physical, emotional, social and school functioning. Our result reflected that all aspects of QOL were affected especially school functioning.
Sickle cell disease- quality of life- Epidemiology