Dataset Information

Implementing Statewide Newborn Screening for New Disorders: U.S. Program Experiences.

ABSTRACT: Data were collected from 39 newborn screening (NBS) programs to provide insight into the time and factors required for implementing statewide screening for Pompe, Mucopolysaccharidosis type I (MPS I), adrenoleukodystrophy (ALD), and Spinal Muscular Atrophy (SMA). Newborn screening program readiness to screen statewide for a condition was assessed using four phases: (1) approval to screen; (2) laboratory, follow-up, and information technology capabilities; (3) education; and (4) implementation of statewide newborn screening. Seventeen states (43.6%) reached statewide implementation for at least one new disorder. Those states reported that it took 28 months to implement statewide screening for Pompe and MPS I, 30.5 months for ALD, and 20 months for SMA. Using survival curve analysis to account for states still in progress, the estimated median time to statewide screening increased to 75 months for Pompe and 66 months for MPS I. When looking at how long each readiness component took to complete, laboratory readiness was one of the lengthier processes, taking about 39 months. Collaboration with other NBS programs and hiring were the most frequently mentioned facilitators to implementing newborn screening. Staffing or inability to hire both laboratory and follow-up staff was the most frequently mentioned barrier.

SUBMITTER: Kellar-Guenther Y

PROVIDER: S-EPMC7422992 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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Implementing Statewide Newborn Screening for New Disorders: U.S. Program Experiences.

Kellar-Guenther Yvonne Y McKasson Sarah S Hale Kshea K Singh Sikha S Sontag Marci K MK Ojodu Jelili J

International journal of neonatal screening 20200430 2

Data were collected from 39 newborn screening (NBS) programs to provide insight into the time and factors required for implementing statewide screening for Pompe, Mucopolysaccharidosis type I (MPS I), adrenoleukodystrophy (ALD), and Spinal Muscular Atrophy (SMA). Newborn screening program readiness to screen statewide for a condition was assessed using four phases: (1) approval to screen; (2) laboratory, follow-up, and information technology capabilities; (3) education; and (4) implementation of ...[more]

PMID: 33073030

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Project description:The increasing availability of novel therapies highlights the importance of screening newborns for rare genetic disorders so that they may benefit from early therapy, when it is most likely to be effective. Pilot newborn screening (NBS) studies are a way to gather objective evidence about the feasibility and utility of screening, the accuracy of screening assays, and the incidence of disease. They are also an optimal way to evaluate the complex ethical, legal and social implications (ELSI) that accompany NBS expansion for disorders. ScreenPlus is a consented pilot NBS program that aims to enroll over 100,000 infants across New York City. The initial ScreenPlus panel includes 14 disorders and uses an analyte-based, multi-tiered screening platform in an effort to enhance screening accuracy. Infants who receive an abnormal result are referred to a ScreenPlus provider for confirmatory testing, management, and therapy as needed, along with longitudinal capture of outcome data. Participation in ScreenPlus requires parental consent, which is obtained in active and passive manners. Patient-facing documents are translated into the ten most common languages spoken at our nine pilot hospitals, all of which serve diverse communities. At the time of consent, parents are invited to receive a series of online surveys to capture their opinions about specific ELSI-related topics, such as NBS policy, residual dried blood spot retention, and the types of disorders that should be on NBS panels. ScreenPlus has developed a stakeholder-based, collective funding model that includes federal support in addition to funding from 14 advocacy and industry sponsors, all of which have a particular interest in NBS for at least one of the ScreenPlus disorders. Taken together, ScreenPlus is a model, multi-sponsored pilot NBS program that will provide critical data about NBS for a broad panel of disorders, while gathering key stakeholder opinions to help guide ethically sensitive decision-making about NBS expansion.

Project description:BackgroundCervical cancer disproportionately affects women in sub-Saharan Africa, compared with other world regions. In Ethiopia, a National Cancer Control Plan published in 2015, outlines an ambitious strategy to reduce the incidence and mortality of cervical cancer. This strategy includes widespread screening using visual inspection with acetic acid (VIA). As the national screening program has rolled out, there has been limited inquiry of provider experiences. This study aims to describe cancer control experts' perspectives regarding the cancer control strategy and implementation of VIA.MethodsSemi-structured interviews with 18 participants elicited provider perspectives on cervical cancer prevention and screening. Open-ended interview questions queried barriers and facilitators to implementation of a new national screening program. Responses were analyzed using thematic analysis and mapped to the Integrated Behavioral Model. Participants were health providers and administrators with positionality as cancer control experts including screening program professionals, oncologists, and cancer focal persons at town, zone, and federal health offices at eleven government facilities in the Arsi, Bale, and Shoa zones of the Oromia region, and in the capital Addis Ababa.ResultsThe cancer control plan and screening method, VIA, were described by participants as contextually appropriate and responsive to the unique service delivery challenges in Ethiopia. Screening implementation barriers included low community- and provider-awareness of cervical cancer and screening, lack of space and infrastructure to establish the screening center, lack of materials including cryotherapy machines for the "screen-and-treat" approach, and human resource issues such as high-turnover of staff and administration. Participant-generated solutions included additional training for providers, demand creation to increase patient flow through mass media campaigns, decentralization of screening from large regional hospitals to local health centers, improved monitoring and evaluation, and incentivization of screening services to motivate health providers.ConclusionsAs the Ethiopian government refines its Cancer Control Plan and scales up screening service implementation throughout the country, the findings from this study can inform the policies and practices of cervical cancer screening. Provider perspectives of barriers and facilitators to effective cancer control and screening implementation reveal areas for continued improvement such as provider training and coordination and collaboration in the health system.

Dataset Information

Implementing Statewide Newborn Screening for New Disorders: U.S. Program Experiences.

Publications

Implementing Statewide Newborn Screening for New Disorders: U.S. Program Experiences.

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