Aawareness On Sickle Cell Disease (SCD) And Prevention Of Sickle Cell Crisis In Patients Of Sickle Cell Anemia. A Questionnaire Based Study.

Abstract

Aim: To assess the knowledge and attitude of sickle cell disease patients and their practice in preventing sickle cell crisis. Objective: 1.To create awareness, motivate, and impart health education and educate them about genetic/marriage counseling to affected families. 2. To evaluate outcome of periodic follow up, clinical management and intervention through local PHCs/Hospitals. Materials and method: It was a cross sectional study , conducted on 50 sickle cell disease patients attending the sickle cell clinic or admitted in AVBRH with sickle cell crisis, by giving them a self-administered questionnaire in local language. Study included patients from pediatrics, gynecology and medicine department. Thus, covering an age group from 3yrs – 33yrs. Results: A total of 50 sickle cell disease patients were surveyed in this study and only 32 patients (64%) were aware of being sickle cell positive, 14 (28%) of them knew how it is caused and 13 (26%) of them knew it is a hereditary disease, even though 70% of the patients were counseled about the disease. Only 8% of the patients underwent pre-marital counseling. Approximately 34% are availing treatment and adapting lifestyle modifications. Negative attitudes towards sickle cell disease were observed among 70-88% of patients. Conclusions: Despite fair knowledge of sickle cell anemia and disease in Vidarbha region, there is a need for improving interventional health educational programs regarding sickle cell, since negative attitudes and risky practices to sickle cell disease was documented. It was noticed that on creating awareness among the patients through this survey, a positive response was received from the patients, educating them about their disease, steps such as family screening, pre-marital screening and counseling and certain lifestyle modifications have been adapted by the patients.