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A systematic evaluation of a newborn screening program for sickle cell disease in southern Gujarat,India

Arjunan, Aishwarya (2013) A systematic evaluation of a newborn screening program for sickle cell disease in southern Gujarat,India. Master Essay, University of Pittsburgh.

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Abstract

Introduction: Newborn screening (NBS) is an important public health measure aimed at early identification and management of affected newborns. Sickle Cell Disease (SCD), with an estimated 5,200 live births every year, is a major public health problem in India. Pre-symptomatic diagnosis, institution of pneumococcal prophylaxis and provision of comprehensive care offer the possibility of prevention of complications and improving outcome of SCD. In India, SCD is highly prevalent among autochthonous ethnic groups called scheduled tribes. These communities also have a high prevalence of extreme socio-economic disadvantage. The population of scheduled tribes in the western state of Gujarat exceeds 14 million individuals. Since 2008 NBS for SCD has been piloted in Valsad and nearby areas. NBS is currently being expanded to other tribal districts in the state. Evaluation of the NBS program is essential for guiding the implementation of NBS in Gujarat and elsewhere. Objectives: To evaluate the pre-analytical, analytical, post-analytical, and organizational aspects of the pilot NBS Program for SCD in Valsad, Gujarat, India. Methods: Using a standardized Performance Evaluation and Assessment Scheme (PEAS) for NBS modified for developing countries we performed systematic evaluation of the pre-analytical, analytical, post-analytical, and organizational aspects of the pilot NBS Program for SCD in Valsad. Results: Since the inception of NBS in 2008 more than 3500 newborns have been screened using High Pressure Liquid Chromatography and iso-electric focusing with confirmation by molecular methods. Individuals identified with SCD receive comprehensive care and families of those with sickle cell trait receive genetic counseling. Using modified PEAS methodology the pre-analytical, analytical and post analytical aspects of the NBS program received a score of 37/46 meeting 80.4% of standards. The organizational domains received a score of 32/34 meeting 94% of standards. Public Health Implications: There has been a serious lack of information on the feasibility of newborn screening and comprehensive care for hemoglobinopathies in a developing country. These data demonstrate the feasibility of implementing NBS for SCD among communities facing extreme social disadvantage in a developing country. They provide the framework for implementation and evaluation of NBS programs for SCD in developing countries.


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Details

Item Type: Other Thesis, Dissertation, or Long Paper (Master Essay)
Status: Unpublished
Creators/Authors:
CreatorsEmailPitt UsernameORCID
Arjunan, Aishwarya
Contributors:
ContributionContributors NameEmailPitt UsernameORCID
Committee ChairKrishnamurti, LakshmananUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Committee Co-ChairGettig, ElizabethUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Date: 10 April 2013
Date Type: Submission
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Publisher: University of Pittsburgh
Institution: University of Pittsburgh
Schools and Programs: Graduate School of Public Health > Human Genetics
Degree: MPH - Master of Public Health
Thesis Type: Master Essay
Refereed: Yes
Uncontrolled Keywords: Newborn, Screening, Sickle, Cell, Disease, India
Date Deposited: 06 May 2015 22:32
Last Modified: 20 Dec 2018 00:55
URI: http://d-scholarship.pitt.edu/id/eprint/18299

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