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Newborn screening timeliness quality improvement initiative: Impact of national recommendations and data repository
Marci K Sontag1,2, Joshua I Miller1,2, Sarah McKasson1,2
1Center for Public Health Innovation, CI International, Littleton, Colorado, United States of America.
Insights
Newborn screening (NBS) timeliness improved through the NewSTEPS 360 initiative, with better specimen collection and result reporting. Continued quality improvement is essential for timely infant diagnoses.
Area of Science:
- Public Health
- Genetics
- Pediatrics
Background:
- Newborn screening (NBS) is crucial for early detection and treatment of infants with heritable disorders before symptom onset.
- Timeliness in NBS, encompassing specimen collection, transport, testing, and reporting, is critical for effective early diagnosis and intervention.
- The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) established timeliness goals for NBS, which were integrated into the NewSTEPS 360 quality improvement initiative.
Purpose of the Study:
- To assess the impact of the multi-year NewSTEPS 360 initiative on the timeliness of newborn screening processes.
- To evaluate improvements in specimen collection, transport, testing, and result reporting within participating NBS programs.
- To identify areas for continued quality improvement to ensure timely diagnoses for all infants.
Main Methods:
- The study analyzed annual data from 25 participating NBS programs over several years.
- The assessment encompassed all stages of the NBS system: bloodspot specimen collection, shipping, sample testing, and result reporting.
- Median percentages and interquartile ranges (IQR) of state-specific performance against timeliness goals were calculated.
Main Results:
- Specimen collection before 48 hours of life increased from 95% in 2016 to 97% in 2018, with 80% of programs exceeding 90% collection within 48 hours.
- Time-critical result reporting within five days improved from 49% in 2016 to 64% in 2018; non-time-critical results improved from 64% to 81% in the same period.
- Laboratories operating seven days a week achieved 95% timely reporting of critical results, significantly higher than those open six (62%) or five (45%) days.
Conclusions:
- Participating NBS programs demonstrated significant progress in improving timeliness due to the NewSTEPS 360 initiative.
- Despite improvements, ongoing quality enhancement efforts are necessary to guarantee timely diagnoses for all newborns.
- Optimizing laboratory operating hours and specimen transport logistics are key areas for future quality improvement in NBS programs.
Background:
Newborn screening (NBS) aims to achieve early identification and treatment of affected infants prior to onset of symptoms. The timely completion of each step (i.e., specimen collection, transport, testing, result reporting), is critical for early diagnosis. Goals developed by the Secretary of Health and Human Services' Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) for NBS timeliness were adopted (time-critical results reported by five days of life, and non-time-critical results reported by day seven), and implemented into a multi-year quality improvement initiative (NewSTEPS 360) aimed to decrease the time to result reporting and intervention.
Methods:
The NBS system from specimen collection through reporting of results was assessed (bloodspot specimen collection, specimen shipping, sample testing, and result reporting). Annual data from 25 participating NBS programs were analyzed; the medians (and interquartile range, IQR) of state-specific percent of specimens that met the goal are presented.
Results:
The percent of specimens collected before 48 hours of life increased from 95% (88-97%) in 2016 to 97% (IQR 92-98%) in 2018 for the 25 states, with 20 (80%) of programs collecting more than 90% of the specimens within 48 hours of birth. Approximately 41% (IQR 29-57%) of specimens were transported within one day of collection. Time-critical result reporting in the first five days of life improved from 49% (IQR 26-74%) in 2016 to 64% (42%-71%) in 2018, and for non-time critical results from 64% (IQR 58%-78%) in 2016 to 81% (IQR 68-91%) in 2018. Laboratories open seven days a week in 2018 reported 95% of time-critical results within five days, compared to those open six days (62%), and five days (45%).
Conclusion:
NBS programs that participated in NewSTEPs 360 made great strides in improving timeliness; however, ongoing quality improvement efforts are needed in order to ensure all infants receive a timely diagnosis.
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