Attrition from Care and Clinical Outcomes in a Cohort of Sickle Cell Disease Patients in a Tribal Area of Western India

Tropical Medicine and Infectious Disease

Palanivel Chinnakali¹  Pruthu Thekkur²  Gayatri Desai³  Chandrakant Vora³  Kapilkumar Dave³  Shrey Desai³ 

[1] Department of Preventive and Social Medicine, Jawaharlal Institute of Postgraduate Medical Education and Research (JIPMER), Puducherry Pin-605006, India;Monitoring and Evaluation Officer, Centre for Operational Research, International Union Against Tuberculosis and Lung Disease, Paris Pin-75006, France;Society for Education Welfare and Action Rural, Jhagadia, Gujarat Pin-393110, India;

关键词: disadvantaged population;    inherited disease;    lost to follow up;    sickle cell disease program;   

DOI  :  10.3390/tropicalmed4040125

来源: DOAJ

【 摘 要 】

In a tribal area of western India, a non-governmental organization implemented a comprehensive sickle cell disease (SCD) program at a secondary level hospital. In a cohort of SCD patients registered during December 2015 to June 2017, we assessed rates of lost to follow-up (LTFU) during the follow-up period using routinely collected data. We compared the uptake of proven interventions and indicators of disease severity from one year prior to registration until the end of the study (June 2018). Of 404 patients, the total follow-up duration was 534 person-years (PY). The rate (95% CI) of LTFU was 21 (17.5−25.3) per 100 PY. The proportion of people who received the pneumococcal vaccine improved from 10% to 93%, and coverage of hydroxyurea improved from 3.5% to 88%. There was a statistically significant decrease in rates (per 100 PY) of pain crisis (277 vs 53.4), hospitalization (49.8 vs 42.2), and blood transfusion (27.4 vs 17.8) after enrollment in the SCD program. Although clinical intervention uptake was high, one quarter of the patients were LTFU. The study demonstrated significant reductions in disease severity in SCD patients.

【 授权许可】

Unknown