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KErala<br />
nEwborn sCrEEning ProgrammE<br />
ProblEm statEmEnt<br />
There was no detailed study of inborn error of<br />
metabolism in kerala. C<strong>on</strong>genital Hypothyroidism<br />
was present in the community and it was necessary to<br />
ensure that the excellent work undertaken by the <strong>Health</strong><br />
Services department is in pace with the best internati<strong>on</strong>al<br />
practices for early detecti<strong>on</strong> and interventi<strong>on</strong> of selected<br />
disorders to prevent serious c<strong>on</strong>sequences like mental<br />
retardati<strong>on</strong>.<br />
ProgrammE DEsCriPti<strong>on</strong><br />
newborn screening test aims at the early detecti<strong>on</strong> of<br />
disorders to prevent serious c<strong>on</strong>sequences by timely<br />
interventi<strong>on</strong>s. The current NBS programme of Kerala<br />
provides screening tests for C<strong>on</strong>genital Hypothyroidism,<br />
C<strong>on</strong>genital adrenal Hyperplasia, Phenyl ket<strong>on</strong>uria and<br />
Glucose-6 Phosphate Dehydrogenase deficiency which are<br />
carried out through the four PH labs. (State PH Lab and<br />
three Regi<strong>on</strong>al PH Labs).<br />
ProgrammE outComEs<br />
During the period from March 2013 to Feb 2015, a total of<br />
115279- cases have been screened.<br />
FinanCial invEstmEnt<br />
The required funds are provided through the State plan<br />
as well as nRHM and the programme is implemented<br />
free-of -cost to the beneficiaries.<br />
sCalabilitY<br />
The NBS programme can be implemented in any of the<br />
States after arranging the following facilities:<br />
•<br />
Equipping selected government laboratories for starting<br />
NBS screening tests (equipment, test-kits, reagents, HR<br />
provisi<strong>on</strong> and necessary training should be given).<br />
•<br />
•<br />
•<br />
•<br />
•<br />
•<br />
•<br />
Selecti<strong>on</strong> of delivery-c<strong>on</strong>ducting hospitals for running<br />
the programme.<br />
NBS sample collecti<strong>on</strong> and transportati<strong>on</strong> guidelines<br />
should be given to the hospitals.<br />
Timely dispatch of test results from the laboratory to<br />
c<strong>on</strong>cerned instituti<strong>on</strong>s(by email).<br />
In the sec<strong>on</strong>d phase, the NBS programme may be<br />
extended to all the delivery-c<strong>on</strong>ducting government<br />
Hospitals in Kerala. Screening for C<strong>on</strong>genital<br />
Hypothyroidism and C<strong>on</strong>genital adrenal<br />
Hyperplasia has to be c<strong>on</strong>tinued.<br />
Phenyl ket<strong>on</strong>uria can completely be excluded and<br />
G6PD may also be excluded, since the c<strong>on</strong>sequences<br />
associated with G6PD is less serious when compared<br />
to C<strong>on</strong>genital Hypothyroidism and also c<strong>on</strong>sidering<br />
the financial viability when all the Government<br />
hospitals are included under the programme.<br />
The government may give directi<strong>on</strong> to private<br />
hospitals in the State to screen the babies for at least<br />
C<strong>on</strong>genital Hypothyroidism at their own facility since<br />
there is a high prevalence in the State.<br />
inclusi<strong>on</strong> of any other inborn error of metabolism<br />
screening under the programme can be c<strong>on</strong>sidered<br />
after discussi<strong>on</strong> with the Senior Clinicians.<br />
C<strong>on</strong>Clusi<strong>on</strong>s/lEss<strong>on</strong>s lEarnt<br />
new born screening programme of kerala is <strong>on</strong>e of the<br />
most advanced and successful programmes implemented<br />
in the recent past. This is the first expanded pilot<br />
programme of the State where 44 selected Government<br />
hospitals are included covering all the 14 districts.<br />
Since this report is based <strong>on</strong> the two years of data of New<br />
Born Screening Programme of Kerala, it more or less<br />
gives the actual prevalence of the selected inborn errors of<br />
metabolism:<br />
• The most comm<strong>on</strong> disorder detected through this<br />
programme is C<strong>on</strong>genital Hypothyroidism (67<br />
C<strong>on</strong>firmed cases), that shows a prevalence of <strong>on</strong>e in<br />
1720 cases. all these babies are <strong>on</strong> treatment now.<br />
Early detecti<strong>on</strong> of C<strong>on</strong>genital Hypothyroidism<br />
through NBS programme has helped to prevent<br />
serious c<strong>on</strong>sequences like mental retardati<strong>on</strong> in these<br />
babies.<br />
• There was not a single positive case of Phenyl ket<strong>on</strong>uria<br />
found through the screening.<br />
• Two c<strong>on</strong>firmed cases of C<strong>on</strong>genital Adrenal<br />
Hyperplasia are there, that shows a prevalence of <strong>on</strong>e<br />
in 57634 <strong>on</strong>ly.<br />
• 9 c<strong>on</strong>firmed cases of G6PD Deficiency, which shows a<br />
prevalence of <strong>on</strong>e in 12809 cases.<br />
The selected government hospitals participated in the<br />
programme with varying levels of enthusiasm with<br />
major delivery-c<strong>on</strong>ducting hospitals being more<br />
enthusiastic.<br />
rEFErEnCE<br />
New Born Screening in India, NHS Programme in UK.<br />
126 | Making a Difference : good, Replicable and innovative Practices