Table 2.

Public Health Domain Scores for Newborn Screening for Sickle Cell Disease Survey (n=39 States)

Public health domain	Potential range	Actual range	Mean	Median	SD	Most commonly reported activities	Least commonly reported activities
Data collection and analysis	0–3	0–3	1.3	1	1. 1	Collected population level data on demographic characteristics (n=16) Conducted needs assessment (n=13)	Analyzed population level data on health status at birth or socioeconomic characteristics (both n=4)
Policy development	0–9	0–8	3.1	3	2. 3	Provided expertise on sickle cell disease to other organizations in the state (n=20) Developed/disseminated fact sheets for community orgs (n=18)	Presented information to state political leaders at least annually (n=4) Produced a state plan to address needs (n=7)
Quality assurance	0–9	0–8	2.2	2	2. 0	Used data to improve quality of services for families (n=18) Monitored private providers or facilities (n=13)	Monitored managed care organizations (n=2) or local hospitals (n=5)
Coordination	0–11	0–8	2.9	2	2. 5	Coordinated with university-based medical facilities/medical schools (n=28) or community organizations (n=20)	Coordinate d with WIC or Head Start (both n=3)
Workforce development	0–8	0–7	2.1	1	2. 1	Targeted education to physicians (n=21) or nurses (n=16)	Developed education plan for policy makers or birthing facility staff (both n=3)
Access to services	0–10	0–9	3.9	4	2. 4	Tracked if children received penicillin prophylaxis (n=27) or kept a visit with hematologist (n=26)	Tracked if children received Transcranial Doppler ultrasound (n=5) or parents received education about spleen palpation (n=6)
Total	0–50	0–38	15.6	14	9. 4

WIC, Special Supplemental Nutrition Program for Women, Infants and Children