Pregnancy to Early Life
Longitudinal (PELL) Data System:
Research into Child Health Policy
Child Health Services Research Interest Group
AcademyHealth
June 27, 2009
Chicago, Illinois
Milton Kotelchuck, PhD, MPH
Boston University School of Public Health
Goals of Presentation
•
Discuss the importance of the creation of State
population-based, longitudinal, linked MCH data
systems for child health services research and
policy
•
Describe the Massachusetts Pregnancy to Early
Life Longitudinal (PELL) data system
•
Provide some examples of current policy-related
usages of the PELL data system
•
Share lessons learned for the development and
further enhancement of state population-based,
longitudinal, linked data systems
Value of Population-based
Longitudinal Linked Data Systems
• Provides information that free standing (silo)
data sets can not
• Can provide both numerators and denominators
for analyses
• Allows both individual and contextual level
analyses
• Supports life course models of health and
development
• Facilitates evaluation of programmatic and
policy initiatives
• Provides a child health services research
database
Massachusetts PELL
Data System
• Collaborative public-university partnership
• Maternal and Child Health Department,
Boston University School of Public Health
• Massachusetts Department of Public Health
(MDPH)
• Centers for Disease Control and Prevention
(DRH (MIHB, ASB); NCBDDD)
PELL Overview
• Population-based, relational, reproductive and
child health data system
• Funded to assess impact of prenatal environment
on subsequent child (and maternal) health
• Utilizes a broad range of public health data
• Longitudinal data system – tracks mothers and
children over time
• Allows for multiple kinds of linkages and analysis
• Breadth of data bases is expandable
• Offers a conceptual and practical model for other
states
Nature of Pell Data System
• Consists of a birth-related Core – birth/fetal
deaths linked to hospital discharge delivery
records
• Other surveillance, hospital services and
program data linked to birth and fetal death
certificates
• Data connected by unique random identifiers for
births, children, and mothers
• All confidential data reside on secure servers at
the MDPH
• Authorized by the Commissioner of Public
Health under MA General Law Chapter 111,
Sections 24A and 24B
PELL and Child Health Services
Policy Research
• PELL started as a small research study; it hadn’t
initially been envisioned as a larger data system
• First study, however, was an evaluation of the
MA Healthy Start program, with major policy and
programmatic consequences
• Now has expanded into an ongoing MDPH core
data system for multiple program activities
• PELL increasingly used for policy analyses, but
these have just begun and its capacity is still
under-utilized
Core Data Sets in PELL
Birth
Certificate
Hosp. Discharge
Delivery (Mother)
Fetal Death
Record
Fetal Death
Certificate
Hosp. discharge
Birth record
PELL Data System
Program Participation Data
Vital and Health Status Data
WIC
Early
Intervention
CORE
Newborn Hearing Screening
Birth Defects Registry
Birth
Certificate
HD Delivery Mothers
Child and Mother deaths
Pregnancy-associated deaths
Other MDPH
programs
(future)
Linked birth-infant deaths
Fetal Death
HD Birth - Child
Health Services Utilization Data
Non-birth Hospital Discharge
Contextual Data
Observational Stays
Geocoded birth data
Emergency Department
Census 2000 Data (2008)
Other Contextual Data (future)
Other Future Datasets:
School, NICU, “ART”,
Medicaid
Conception
Delivery
Intrauterine (Fetal)
Pregnancy (Mother)
One Year
Infancy/Mother
Postpartum
Five Years
Early Childhood/
Interconceptional (Mother)
Birth Certificate/
Fetal Death
Hospital
Discharge
Observational
Stay/ED
WIC
Early Intervention
Infant/Child Death
Maternal/Mother
Death
Examples of PELL Longitudinal Data Capacity
Types Of Longitudinal Linkages
• Non-Birth Hospital Related Services
• Sequentially-Linked Births/Fetal Deaths
• Program Use by Individuals and
Families
PELL Core Data: 1998 - 2006
Total Live Births
Total Fetal Deaths
Total Mothers
Repeat Mothers
734,987
3,896
514,433
174,221
NOTE: Includes all births to MA residents (in and out of state) and
in state births to non-MA residents
Technical Issues: PELL Linkage
Methodology
• Linkage without common unique identifiers
• Combination of Deterministic and Probabilistic
matching
• LinkPro 2.0 (inexpensive, easy to use, effective)
• Set of linkage programs, with a linker file
(similar to a relational database)
• Unique identifier randomly generated to facilitate
linkage and assure confidentiality
• Dyadic linkage flexibility (via linker file)
Data Base Structure
Hosp Disch Mother data
MOMUID
Hosp Disch Child data
HDMOMUID
KIDUID
HD MOM - Matched
HDKIDUID
HD MOM - Weighted
HDKID - Matched
All other vars
Linker File
ALLMOMUID
Healthy Start Mother data
MOMUID
MOMUID
KIDUID
HSUID
HDKID - Weighted
All other vars
EI data
HS - Matched
KIDUID
HS - Weighted
EIUID
All other vars
BC/FD data
EI - Matched
ALLMOMUID
EI - Weighted
MOMUID
All other vars
KIDUID
All other vars
PELL Core Linkage: Vitals to
Hospital Discharge Data
• No Unique Identifier
• Core Linkage Variables:
• Facility code
• Medical Record Number (babies only)
• Date of Birth/Date of Delivery (from hospital
discharge file)
• Sex (babies only)
• Zip Code
• Birth weight used to resolve duplicates
PELL Core Linkage Rates
1998-2006
Type of birth
Live births linked to
HD^ birth record
Linkage Rate*
(# of Records)
99.2%
(708,467)
Fetal deaths linked to
HD^ delivery record
* Among occurrence births to Massachusetts residents
^ Hospital Discharge
98.7%
(3,810)
PELL Program Linkage Rates
Program
Early Intervention* records
linked to live births
Birth defect cases^ linked to
live births and fetal deaths
Linkage Rate
(# of Records)
86.9%
(46,857)
99.7%
(5,299)
* Among EI children enrolled between January 1998 – September 2003 and born
between January 1998 – September 2000
^ MA Birth Defects Monitoring Program, 1998-2002
Technical Issues Summary
• Technical issues are no longer the
principal barrier for linked data systems
• Growing project experience and newer
computer programs facilitates linking data
• However, life would be much easier with a
common and universal identifier
Confidentiality/Access to Database Issues
• Major issue in constructing linked
databases
• Linked databases involve/require
confidential data
• Access involves both political and
professional concerns
• Substantial inter-and intra-agency turf
issues
• More complex in Public/Private partnership
• HIPAA further complicated access to health
databases
Confidentiality
• Commissioner of Public Health 24AB
confidentiality approval required for PELL
development and each analytic study
• M.G.L. Chapter 112 Section 24AB stronger
confidentiality protection than HIPAA
• All data are held and linked at MDPH on a secure
server
• Only “de-identified” or “limited use” data sets are
created for approved analytic studies at MDPH or
offsite
• MDPH RaDAR (Research and Data Access
Review) Committee provides an institutional
mechanism to review research/confidentiality
requests using state public health data bases
PELL Current Analytic Studies
1.
Impact of Multiple Births in Massachusetts
Goal: To examine the effects of multiple pregnancies and multiple births on
fetal/infant and maternal morbidity and mortality, and assess the use of acute
health care resources
2.
Interpregnancy Period Project
Goal: To use longitudinal core PELL data to examine and refine measures of
interpregnancy periods (IPP)
3.
Pregnancy-Associated Injuries
Goal: To assess the prevalence of pregnancy-associated injuries (PAI) and
examine health disparities related to race/ethnicity, health insurance and age
4.
Impact of Late Pre-term Delivery on Infant and
Maternal Health
Goal: Assess the impact of late preterm (34-36 weeks) births on infant and
maternal health and health services usage and costs
PELL Current Analytic Studies
5. Maternal and Infant Morbidity Associated with NoIndicated Risk Cesareans
Goal: This series of studies will examine the risks for maternal morbidities
associated with method (vaginal vs cesarean) of delivery, with a particular
emphasis on cesareans associated with no identified medical risk.
6.
Children with Craniofacial Malformations in
Massachusetts: Service Utilization and Associated
Costs – Children with Down Syndrome in
Massachusetts
Goal: Assess acute hospital-related health care service utilization and associated
costs, along with selected indicators of morbidity and mortality, for children born in
Massachusetts from 1998 through 2002 with craniofacial malformations (i.e. oral
clefts, craniosynostosis, microtia) –and Down syndrome
7.
An Assessment of the Massachusetts Early
Intervention Program
Goal: Assess maternal and infant birth characteristics that predict EI referral from
the entire Massachusetts population and compare infants who were referred to
those infants who were not referred to EI on a variety of birth, infant, and maternal
demographic characteristics
PELL Current Analytic Studies
8. Gestational Diabetes, Sequential Pregnancies
Goal: This series of studies will examine the risk factors for recurrence of
gestational diabetes in sequential pregnancies and the extent of conversion to
diabetes, as well as the infant and maternal health sequelae of GDM, with the aim
of enhancing the MA Diabetes and Obesity reduction initiatives
9. Fetal Death Surveillance
Goal: To improve the surveillance of Fetal Deaths, with a focus on improved
classification of cause of death, enhanced measurement of risk, with the added
information from hospital discharge records.
10. Autism Risk and Surveillance
Goal: Assess the infant, maternal and programmatic characteristics associated
rising temporal trends in early detection and referral to EI treatment of MA children
(0-3) with Autism Spectrum Disorders.
PELL Current Analytic Studies
(Initiated)
11. Evaluation of new MA Obstetric Regulations
Goal: To evaluate the new MA Obstetric Regulations, to see if they achieved their
goals of improved maternal and infant transfers, volume performance levels, and
decrease in inappropriate services at Level I and II hospitals.
12. Enhanced Assessment of Maternal Drug and
Alcohol Treatment Needs in Massachusetts
Goal: To improve the needs assessment capacity for the MA DPH Bureau of
Substance and Alcohol Services, by better identifying need for substance treatment
among women who have recently delivered infants but do not currently participant
in MDPH treatment programs, through use of emergency room, hospital discharge
and birth certificate data.
13. MOSART: MA Outcomes Study of Assisted
Reproductive Technologies
Goal: Assess the maternal, infant and child sequalae of specific ART treatments,
through the linking of detailed clinical ART treatment data from SART with
population-based data from PELL, considering both the underlying infertility and the
impact of multiple-birth pregnancies; initial study on child health sequalae.
Examples of PELL Child Health
Policy Research Usage
• Evaluation of the Early Intervention
Program
• Elective C-Sections
• Autism Surveillance
• Late Pre-term Births and Neonatal
Morbidity
Use of PELL Population-Based
Data to Evaluate the MA Early
Intervention Program
Evaluation Question: Is EI serving
the at risk of delay population?
Data: Births and Linked PELL Core
1998-2000,
Early Intervention Data through 2003
Clemens et al 2006, 2008;
Barfield et al 2008
Background: EI in Massachusetts
•
Federally mandated - Individuals with Disability Education Act, part C
•
Integrated services to enhance development for children ages 0 - 3 with
developmental delay, some states enroll at-risk children
•
Substantial state and 3rd party insurer investment
•
Multiple “service” levels
Referral
• MD, hospital,
parents
• Child Find
Evaluation
IFSP - Enrolled
4 Eligibility categories
• developmental delay
• medical diagnosis (established condition)
• 4+ risk factors
• clinical judgment
Q3: Referral differs by risk
Percentage of infants < 1200 g referred to EI within
12 months, by maternal race/ethnicity and insurance,
MA Births 1998-2000
100
93
% referred 12 months
82
88
89
Hispanic
Other
93
84
80
60
40
20
0
White
Black
Comm
govt,
none
•After adjusting for additional birth risks, infants born to black
mothers, mothers with no insurance and Boston region mothers
were referred later and were more likely to be not referred to EI
Q4: Services After Referral
Evaluation:
• Of referrals, 86% had an evaluation for eligibility
• Children of teen mothers were 8% less likely to
have an evaluation
• Children born to mothers living in a high poverty
town also were less likely to have an evaluation
Enrollment:
• Of eligible children, 90% enrolled
• Children of teen mothers were less likely to enroll
than children of older mothers
Maternal characteristics of MA infants, referral,
evaluation, and enrollment in Early Intervention
(Births 1998-2000)
Characteristic
N (%)
Births
N (%)
Referred
N (%)
Evaluated
N (%)
Enrolled
219,001
40,711
35,707
29,950
White
163,537 (74.9)
28,192 (69.4)
25,223 (70.7)
21,331 (71.4)
Black
15,370 (7.0)
3,741 (9.2)
3,019 (8.5)
2,470 (8.3)
24,238 (11.1)
6,366 (15.7)
5,395 (15.1)
4,419 (14.8)
Asian
11,243 (5.2)
1,459 (3.6)
1,268 (3.6)
1,069 (3.6)
Other
4,074 (1.9)
887 (2.2)
743 (2.1)
610 (2.0)
Overall
Maternal Race
Hispanic
Barfield et al 2008
Policy Benefits to EI Program
• Demonstrated child find success
• Better identified populations who are not
referred or disproportionately lost to followup after referral
• Informed improved outreach strategies,
service and program monitoring
• Enhanced some hospital referral practices
• Expanded evaluation capacity of EI
program
• Improved EI- PELL linkage data variables
Maternal Outcomes
with Medically Elective
Caesareans
Mass. 1998-2003
US Cesarean Rates, 1989-2005
32
30
28
%
26
%24
22
20
1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005
% Tot US 22.8 22.7 22.6 22.3 21.8 21.2 20.8 20.7 20.8 21.2 22.0 22.9 24.1 26.1 27.5 29.1 30.2
If in 2005 the cesarean rate was the same as in 1996, there
would have been 339,015 fewer cesareans in the U.S.
Source: National Center for Health Statistics Annual Birth Reports
This group is key
analytic difference
from earlier
analyses
Medically
Elective
Primary
Cesareans
Source: Declercq et al. Obstet
Gynecol. 2007.109: 669-677.
Planned Primary Caesarean Rate
(%), Mass., 1998-2004
3
2.63
2.17
1.62
1.73
2001
2002
%
1.33
1.03
0.43
0
1998
1999
2000
2003
Source: Declercq et al. Obstet Gynecol. 2007.109: 669-677.
2004
Rehospitalization of Mothers by
Method of Delivery, Mass. 1998-2003
Planned Primary Caesarean (n = 3,334)
Planned
Vaginal Birth
Rehosp.
Rate/1,000
(n = 240,754)
1-30 days
Postpartum
7.5
31-180 days
Postpartum
9.8
181-365 days
Postpartum
9.2
Rehosp.
Rate/
1,000 NIR Unadjusted
Odds Ratio
PCS
(95% CI)
Births
2.6
19.2
(2.01-3.33)
1.4
13.5
(1.02-1.86)
1.6
14.6
(1.19-2.13)
* Adjusted for age, race/ethnicity, parity;
Source: Declercq et al. Obstet Gynecol. 2007.109: 669-677.
Adjusted*
Odds Ratio
(95% CI)
2.3
(1.74-2.90)
1.6
(1.08-1.98)
1.8
(1.32-2.38)
Postpartum rehospitalization (1-30 days) rates by
diagnosis for mother by MoD, Massachusetts, 1998-2003
Planned Vaginal (n= 240,754)
Cause
Rate/1,000
Major puerperal
infection
Planned Caesarean (n=3,334)
Cause
Rate/1,000
1.83
Complication of
obstetrical wounds
6.60
Nonpurulent mastitis
0.73
Major puerperal infection
3.30
Delayed & secondary
postpartum hemorrhage
0.62
Care and observation
2.40
0.54
Inflammatory diseases of
uterus
1.50
0.46*
Infections of the
genitourinary tract
1.50
0.44
Delayed & secondary
postpartum hemorrhage
1.20
Infections of the
genitourinary tract
Complication of
obstetrical wounds
Other complications
* For unplanned cesareans alone rate was 3.97/1,000
Source: Declercq et al. Obstet Gynecol. 2007.109: 669-677.
Average Hospital Length of Stay and Costs
by Method of Delivery, Mass., 1998-2003
Planned Vaginal Planned Primary
Cesareans
Initial Hospital Stay
Avg. Hospital
Costs* (95% CI)
$2,513
$4,373
($2,507 -- $2,519)
($4,304 -- $4,441)
Subsequent Rehospitalization in 12 months Postpartum
Avg. Hospital
Costs* (95% CI)
$5,436
$6,100
($5,221--$5,651)
($4,745 -- $7,455)
* Charge data adjusted by cost to charge ratios obtained from the MA Div. of Healthcare Finance and
Policy and adjusted for inflation to reflect 2003 dollars. Source: PELL Data System
Source: Declercq et al. OBGYN 2007. 109:669-77.
Policy Responses to C-Section
Analyses
• Two MA State panels examining rising C-section
rates (MDPH, MMS)
• New elective C-Section items on MA PRAMS
surveys
• Participation in two NICHD consensus
conferences on elective C-sections and VBACs
• Fostering national debate on elective C-sections
• Renewed focus on late preterm deliveries, the
majority of which are C-sections
Surveillance for Early Diagnoses of
Autism Spectrum Disorders in
Massachusetts
Susan E. Manning, MD, MPH
LCDR U.S. Public Health Service
CDC MCH Epidemiology Program Assignee
Massachusetts Department of Public Health
Autism Spectrum Disorders (ASD)
• Autism, Asperger’s, pervasive developmental
disorder, not otherwise specified (PDD-NOS)
• Lifelong disorders with onset < age 3 years
• Impaired communication/social functioning, unusual
behaviors and interests
• Prevalence: 66/10,000 (1 in 150) children aged 8 yrs
(CDC, 2007)
• Early diagnosis and treatment can improve
developmental outcomes
• MA Early Intervention Program (0-3) provides a very
active and comprehensive specialty service program
for children (0-3) diagnosed with ASD
Methods
• Population:
In-state births to MA resident mothers, Jul 1999-Jun 2003
• Case-definition:
– ICD-9 code for Autism, PDD-NOS, Asperger’s disorder in EI
database or autism Specialty Services claim during Jul 1999June 2006
• Early ASD diagnosis:
Diagnosis of ASD before age 36 months
N = 1,935; 68% based on diagnoses, 32% on service claims
• Data analysis
– Trends in early ASD diagnoses
– Comparison of rates by socio-demographic characteristics
ASD/10,000 live births
Trend in Early ASD Diagnoses,
MA Births – Jul 1999-Jun 2003
100
90
80
70
60
50
40
30
20
10
0
69.9
75.9
56.0
52.2
54.1
* p<0.0001
1999
2000
2001
Birth Year
Source: PELL Data System.
* Cochran-Armitage trend test.
2002
2003
Trends in Early ASD Diagnoses, by Age at
Diagnosis, MA Births – Jul 1999-Jun 2003
0-24 mos
24+ mos
ASD/10,000 live births
75
60
45
52.9
35.7
37.7
* p<0.0001
58.4
41.6
30
15
13.0
15.1
13.6
16.6
0
1999
2000
2001
Birth Year
Source: PELL Data System.
* Cochran-Armitage trend test.
2002
17.2
* p=0.092
2003
Trends in Specific ASD Diagnoses,
MA Births – Jul 1999-Jun 2003
Autism
PDD-NOS
ASD/10,000 live births
50
40
* p<0.0001
30
20
10
26.6
27.2
16.4
15.7
* p=0.003
22.9
17.5
10.5
19.0
12.1
13.3
0
1999
2000
2001
Birth Year
Source: PELL Data System.
* Cochran-Armitage trend test.
2002
2003
Trends in Early ASD, by Geographic
Region, MA Births – Jul 1999-Jun 2003
Birth Year
1999
2000
2001
2002
2003
/10,000
/10,000
/10,000
/10,000
/10,000
Boston
43
54
50
65
88
0.003
Central
67
31
48
81
71
0.003
Metrowest
56
73
63
74
72
0.270
Northeast
59
60
60
76
78
0.025
Southeast
51
42
53
55
68
0.047
Western
27
49
54
70
88
<0.0001
Source: PELL Data System.
* Cochran-Armitage trend test.
p for trend*
Early ASD Diagnoses by Maternal Age,
MA Births – Jul 1999-Jun 2003
# ASD/10,000 births
*
90
80
70
60
50
40
30
20
10
0
84.4
*
56.4
30.5
<20
20-34
Maternal age (yrs)
* Statistically significantly different from age < 20 years (p<0.05).
35+
Early ASD Diagnoses by Race/ethnicity,
MA Births – Jul 1999-Jun 2003
# ASD/10,000 births
70
66.4
58.0
60
*
50
*
46.3
39.2
40
30
20
10
0
White NH
Black NH
Hispanic
Race/ethnicity
* Statistically significantly different from White NH (p<0.05).
Other
Early ASD Diagnoses by Maternal
Education, MA Births – Jul 1999-Jun 2003
# ASD/10,000 births
80
70
*
*
65.0
70.8
Some college
4+ years
60
50
47.7
40
30
20
10
0
HS or less
Maternal education
* Statistically significantly different from HS or less (p<0.05).
Early ASD Diagnoses by Insurance, MA
Births – Jul 1999-Jun 2003
# ASD/10,000 births
80
70
67.5
*
60
47.4
50
40
30
20
10
0
Private
Public
Insurance
* Statistically significantly different (p<0.05).
ASD Conclusions
• ASD diagnoses among MA children by
age 3 appear higher than expected
based on national estimate among 8
year-olds
• Early diagnoses of ASD are increasing
in MA
• Socio-demographic disparities in early
ASD diagnoses exist
• Multiple explanations for increasing
trend in early ASD diagnoses
Public Health Implications
• High cost of ASD services and parent demand
driving intense focus on this population
• PELL enhances monitoring trends and identifying
disparities in early ASD diagnoses
• Results used to inform EI program and anticipate
future service demand and resource needs
• Major EI program initiatives on disparities in early
diagnoses, and early diagnosis criteria
• Major initiative to link EI (0-3) ASD records to school
special education records (3-21), to examine
success of early ASD identification, continuity of
diagnosis, and impact of EI services on subsequent
school experiences
• Multiple research initiatives
Risk Factors for Neonatal
Morbidity Among Healthy,
Late Pre-term Newborns
Carrie K. Shapiro-Mendoza
Co-authors: KM Tomashek, M Kotelchuck, J Weiss,
W Barfield, S Evans, A Nanini
Background
• Late pre-term births (34-36 weeks
gestation) are increasing.
• In 2002, 8.5% of U.S. births were late pre-term
• Late pre-term newborns typically receive
routine care in well-baby nurseries and are
presumed low risk.
• Limited knowledge about their neonatal
outcomes.
• Understanding which late pre-term infants
are at greater risk is essential for
preventing post discharge complications.
PELL Late Pre-term Studies
1. Effects of late preterm and maternal
medical conditions on newborn
morbidity (Shapiro-Mendoza et al 2008)
2. Risk factors for neonatal morbidity and
mortality among “healthy” late preterm
newborns (Shapiro-Mendoza et al 2008)
3. Early discharge among late preterm and
term newborns and risk for neonatal
morbidity (Tomashek et al 2006)
Study 1: Effects of late preterm and maternal
medical conditions on newborn morbidity
• Morbidity during the birth hospitalization:
– Newborns with
• Hospital stay < 5 nights and transfer to another medical
facility
• Hospital stay ≥ 5 nights and significant morbid diagnosis
by ICD codes
• Death prior to hospital discharge
• Maternal medical conditions (assessed
individually)
Risk of morbidity during birth
hospitalization by gestational age
37-41
3.0
Gestational age in weeks
34-36
22.2
41
2.8
40
2.5
39
2.6
38
3.3
37
5.9
36
12.1
35
25.6
34
51.7
0
10
20
30
Risk (%)
40
50
60
Risk of infant morbidity during birth hospitalization by
GA and intrauterine exposure to selected maternal
medical conditions, and effect measure modification,
MA 1998-2003
Risk of Morbidity
N (%)
Maternal medical
conditions & pregnancy
complications
No maternal medical
conditions
Term Late Preterm
(n=386,688 (n=17,120)
*Adjusted risk ratio for
morbidity
RR (95% CI)
Term Late Preterm
(n=386,688) (n=17,120)
5799 (3.0)
11321 (22.1)
1.0
7.0 (6.8, 7.2)
Cardiac Disease
301 (4.4)
144 (25.4)
1.5 (1.4, 1.7)
8.6 (7.5, 10.0)
Acute or chronic lung
disease
778 (4.9)
479 (30.2)
1.6 (1.5, 1.7)
9.3 (8.6, 10.0)
Diabetes mellitus
890 (5.0)
565 (28.4)
1.7 (1.6, 1.8)
9.3 (8.6, 10.0)
1345 (5.2)
1259 (32.5)
1.8 (1.7, 1.9)
10.8 (10.3, 11.4)
434 (7.1)
658 (37.2)
2.4 (2.2, 2.7
12.4 (11.6, 13.2)
1592 (7.2)
485 (30.0)
2.5 (2.4, 2.6)
9.8 (9.1, 10.6)
Hypertensive disorders of
pregnancy
Antepartum hemorrhage
Maternal infection
Study 2 : Risk factors for neonatal morbidity
among healthy late pre-term newborns
• Isolated healthy late pre-term newborn
population (2.6% of all MA singleton, vaginal
births)
• 6.1% of healthy late pre-terms had a subsequent
rehospitalization (neonatal morbidity)
• Risk factors for rehospitalization: breastfeeding
at discharge, Asian race/ethnicity, primiparae,
and L&D complications
• First population-based study to identify risk
factors for neonatal morbidity among healthy
near-term newborns.
Leading neonatal morbidity diagnoses
Digestive disorders
3%
Other
15%
Respiratory problems
3%
Feeding difficulties
4%
Infection
14%
Jaundice
61%
Study 3: Early discharge among late
pre-term and term newborns and risk
for neonatal morbidity
• Sample: All infants discharged less than
two days post delivery
• Being late pre-term was associated with a
nearly two-fold risk of neonatal hospital
readmission (controlling for multiple other variables)
• First population-based study to identify risk
factors for neonatal morbidity among preterm newborns discharged early.
PELL Studies of Late Pre-term
Infants: Policy Impacts
• Knowledge base influencing practice and policy
• Major changes in U.S. obstetrician perceptions of
the health of late preterm infants and their
rationale for early deliveries
• Supports March of Dimes Prematurity Prevention
initiatives
• U.S. increasing C-section rate slows in 2007,
associated with decrease in late preterm Csection deliveries
• (Irony) MA obstetricians telling PELL staff to
examine late preterm deliveries
• Late pre-term delivery a major new CDC
research focus
PELL and Child Health Policy
Research: Lessons Learned
• University (Private) – Public Partnership
Critical
• Ongoing Data System, Not One Time
Research Data Linkage Project
• Capacity for Continued Evolution and
Enhancement
• Science of Using Linked Data Systems
• Align with MCH Life Course Models
PELL and Child Health Policy
Research: Lessons Learned
• Individual Level Data, Creative Linkages
• Multiple Outcome Measures (utilization,
health status, costs)
• Capacity for Child Health Services
Research in Three Domains
– Monitoring trends
– Program evaluation
– Policy assessment
• Data Redundancy as a Source of Strength
PELL and Child Health Policy
Research: Lessons Learned
• Long-term Commitment Required for
Development of State Data Systems
• Policy Makers – Child Health Policy
Researchers an Uneasy and Often
Changing Relationship
• Current Limitations to Further
Development
–
–
–
–
–
FERPA limitations on access to school health data
Confidentiality issues in era of linked data systems
Retrospective versus real time data systems
Ambulatory data systems not well incorporated
Linkage of Medicaid, HMO data remains problematic
• PELL Data System Offers Model for Other
States
Conclusions
• Population-based, longitudinal, linked State
based data systems, like PELL, can influence
public policy at the state and national level
• Policy influenced by providing both new
knowledge and new programmatic and policy
evaluations
• Advancing the science of linked data systems is
critical for improving policy development
• PELL still in early stages of influencing MA
State public health policy and programs
PELL Data System
Advancing the MCH Sciences by
Using Linked Data Systems
Advancing the MCH Sciences of
Using Linked Data Systems
Gestational Diabetes
• Impact on maternal health and on
subsequent pregnancies
• Impact on childhood obesity and
diabetes
Percent of deliveries with gestational or other pre-existing
diabetes, Massachusetts, 1998-2004
Vitals^
PELL*
Year
Gest.
Diabetes
Only
Gest.
Diabetes
Only
Other preexisting
diabetes
All
diabetes
1998
2.4
3.5
0.8
4.3
1999
2.6
3.7
0.9
4.6
2000
2.8
4.1
0.9
5.0
2001
3.0
4.3
0.9
5.2
2002
3.3
4.3
1.0
5.4
2003
3.4
4.5
1.0
5.5
2004
3.5
4.7
1.2
5.9
^ Gestational diabetes reported on birth or fetal death certificate only
* Diabetes reported on birth or fetal death certificate, or hospital discharge delivery record
Gestational diabetes, other diabetes, or both, as reported
on hospital discharge vs. birth/fetal death certificates,
MA residents, CY 1998-2004
Birth/Fetal
Death
Cert
No
Gest.
Diabetes Diabetes
No Diabetes
521,738
Gest. Diabetes
Hospital Discharge Data
Other
Diabetes
Both (Gest
and Others)
Total
6,763
411
50
528,962
3,345
12,713
329
85
16,472
Other Diabetes
1,098
461
1441
15
3,015
Both (Gest. and
other)
354
871
95
32
1,352
526,535
20,808
2,276
182
549,801
Total
Gest Only: 22,821
Other: 5,249
Total: 28,070
Source: PELL
GDM Research Policy Implications
• Multiple MA State initiatives on GDM, diabetes
and obesity reduction efforts directed at
pregnant women, children and adults
• Data strategy a key component of the MA State
initiatives
• Improvements in GDM measurement (PRAMS,
birth certificates)
• New PELL research on sequential births
• Improved communication of incidence and risk
MK involvement in linked data
systems
• MDPH
– Evaluation of MA WIC Program, through linkage of WIC
participation records and Vital Statistics data
– ROSS Reproductive Outcome Surveillance System
• UNC-CH
– Evaluation of NC Medicaid Baby Love Program; Assessment of
Maternal Morbidity
– Linkage of Birth Certificates, Medicaid, WIC records
• HRSA
– Facilitate linkage of Medicaid, CDC/NCHS, and HRSA data
– Support State data linkage efforts
• BUSPH
– Uterine Rupture/VBAC study
– Linkage of birth certificates and hospital discharge records