While diagnostic examinations have been an important component of medical care for centuries, screening programs have been much more recent. Diagnostic tests determines whether a condition is present with 100% accuracy whereas, a screening test looks at the risk of whether a condition is present. Among the several types of screening programs, newborn screening programs are comparatively new.
Newborn screening (NBS) programs offer huge benefits as timely identification of asymptomatic individuals conditions can lead to early interventions consequently reducing neonatal morbidity or mortality. Countries, mostly developed, have successfully integrated Newborn screening as a part of their public health program however, developing and underdeveloped countries still face certain challenges in making Newborn screening a nationwide health program as they either have an underdeveloped or a developing healthcare system.
While developed countries have clear policies, precise statistical data and information, proper funding and needed support, the major prerequisites for a sustainable NBS program implementation in a developing healthcare ecosystem involves, as mentioned below are as follows:
Planning: Executing a successful NBS program requires thorough planning and visionary ideas that can be turned into a systematic approach for a sustainable NBS program. Once logically developed, the program plan provides a foundation on which to establish the remaining elements necessary for success.
Leadership and Endorsements: For a successful NBS program implementation, a strong leadership is required with an ability to understand and address the challenges in definitive direction. A strong leader would not only create a favorable image of the initiative, but would also help in determining the course of action of the program. Likewise, people, mostly parents, can help build a strong image of the program by endorsing and advocating about it. Strong leadership coupled with multiple endorsements would widen the program’s reach and highlight the benefits associated.
Education and Awareness: The general population must be educated about the benefits of a nationwide program focused towards pediatric health. They must be aware of newborn diseases and inborn errors of metabolism. Not only the policy makers but parents signing in for the NBS program for their babies must have knowledge of the benefits of timely detection and diagnosis of various ailments.
Acceptance and acknowledgement from the health professionals: A nationwide program for babies born throughout a geography needs complete support from the existing medical fraternity. The medical community must accept the initiative. The program leaders, must possess sufficient knowledge and expertise to answer all the related technical queries in a manner that a sense of confidence is generated among the peers and the stake holders of the program.
Technical and Logistic support: NBS programs require different protocols from the routine medical laboratory tests. Its implementation requires proper training and knowledge sharing. Additionally, special technical expertise are required for overall conduct and data interpretation. The various processes involved in NBS also needs to be executed properly with skilled workforce. The system must have adequate mechanism for obtaining and distributing blood collection supplies. Also, NBS programs yield a large quantity of data therefore, required modalities for data storage, archival, maintaining appropriate records and retrieval must be available.
Proper policies and guidelines: NBS programs at a national level means enrollment of millions of babies. Any health program at such vast level requires clear-cut guidelines, policies and protocols addressing almost all the issues related to NBS. These practices are undertaken to avoid confusion and unnecessary overlap. Also, clearly defined policies, work instructions etc. help in the management of a nationwide health program with ease.
Evaluation methods and Feedback mechanisms: An outcome monitoring program would act as a tool to assess the overall quality and efficiency of the program. This would further help in improving the process so that more and more babies are benefitted. The program must also be open for feedbacks and suggestion by the local people so that local sensitivities are kept into consideration.
Finance: For a nation-wide health program, sufficient funds are of prime importance. Sufficient funds would ensure the availability of technology needed for the implementation and the execution of the program. Additionally, finances are required to build healthcare setups, create communication channels etc. It is an axiom fact that many countries fail to make NBS programs mandatory due to low budget. Governments must provide flexible financing options for NBS tests to parents wishing to have their babies screened.