Conclusions: Families rely on therapeutic and supportive
services to aid them in caring for the special needs of a child
in home and community settings. Our findings suggest that
among children and youth with special health care needs,
those lacking a quality medical home are more likely to have
unmet needs for services than those whose medical home
provides accessible, continuous, comprehensive, coordinated
care in a family-centered, culturally sensitive environment.
When needs for therapeutic and supportive services are not
met, children and their families may suffer secondary
consequences to their conditions or may be at risk of poor
health outcomes.
Implications for Policy, Delivery, or Practice: Achieving the
Maternal and Child Health Bureau and American Academy of
Pediatrics policy goals of ensuring a quality medical home for
every child may have the added benefit of promoting access to
needed therapeutic and supportive services for children and
youth with special health care needs.
Primary Funding Source: Other, Graduate School, UWMadison
Posters
Poster Session
Saturday, June 24 • 12:00 p.m. - 1:45 p.m.
Lunch served
„ Quality of the Medical Home: Meeting Children's Needs
For Therapeutic and Supportive Services
Ruth Benedict, Dr.P.H., Christa Tober, M.S.
Presented By: Ruth Benedict, Dr.P.H., Assistant Professor,
Kinesiology, Occupational Therapy Program, University of
Wisconsin, Madison, 123 Waisman Center, 1500 Highland
Ave., Madison, WI 53705; Tel: (608)262-7878; Email:
rbenedict@education.wisc.edu
Research Objective: To determine if the quality of a child’s
medical home is associated with unmet need for therapeutic
and supportive services among children and youth with
special health care needs.
Study Design: Quality of the medical home is measured
using five indicators including child received care that was (1)
accessible; (2) family-centered; (3) continuous, comprehensive
and coordinated; (4) compassionate and culturally effective;
and (5) child received needed preventive care. Therapeutic
services were defined as occupational, physical, and speech
therapy, mental health or substance abuse services.
Supportive services included programs and services that
support families in caring for a child such as specialized
equipment, transportation, home health or respite care. We
use descriptive statistics to generate an estimate of the
percent of children needing and receiving therapeutic or
supportive services by selected demographic characteristics.
Using logistic regression to control for demographic and
socioeconomic variables, we model the quality of a child’s
medical home as predictive of having unmet needs for
therapeutic or supportive services.
Population Studied: Children 0-17 years identified as needing
therapeutic (N=15793) or supportive (N=23376) services from
the 2000-2001 National Survey of Children with Special
Health Care Needs (NSCSHCN).
Principal Findings: Of children identified as needing services,
15% were reported to have unmet therapeutic service needs
and 9% had unmet supportive service needs. Only 43% of
children needing therapeutic services and 51% of children
needing supportive services met the criteria of having a
medical home. High quality care within a medical home was
associated with a decreased likelihood of having unmet needs
for therapeutic (a.O.R.: 0.30, 95% C.I: 0.22-0.39) and
supportive (a.O.R.: 0.25, 95% C.I.: 0.19-.033) services. Each of
the subcomponents of a medical home predicted unmet need
as did the severity of the child’s condition, family income
below 200% FPL, the child being uninsured, and having a
mother with at least some education beyond high school.
„ Children with Frequent or Severe Headache: New Data
on Population Prevalence, Characteristics, Health Status
and Needs and Access to Health Care Christina D Bethell,
Ph.D.,M.P.H.,M.B.A., Thomas K Koch, M.D., Kathleen
Newton, B.S.
Presented by: Christina Bethell, Ph.D., M.B.A., M.P.H.,
Associate Professor, Oregon Health & Science University, 707
SW Gaines Street, Portland, Oregon, 97219. Tel: 503-494-1892.
E-mail: bethellc@ohsu.edu,
Research Objective: To estimate the population prevalence
of frequent or severe headache experienced by children age 317 and to assess if children with and without other special
health care needs experience greater functional impact and/or
issues with health care access and quality compared to similar
children who do not experience headache.
Study Design: The prevalence and characteristics of children
with frequent or severe headache was estimated using data
from the 2003-2004 NSCH (n = 102,000 weighted to
represent all children age 0-17). Logistic regression analysis
was used to assess the impact of headache on health
outcomes (e.g. missed school, overall health status) and
aspects of quality of care (e.g. access to specialists) after
adjusting for age, sex, race, household income and special
health care needs.
Population Studied: 102,000 randomly identified children
living in US households.
Principal Findings: Nationally, 5.6%, or 3.4 million, children
age 3-17 have parents who report that they experience frequent
or severe headache (3.2%-7.7% across states). This rate varies
across age, sex, race and household income groups. Over 12%
of children with special health care needs (CSHCN) and 14.8%
of those with moderate or severe socio-emotional difficulties
experience headache. Children with headache are much more
likely to miss two or more weeks of school (adj. OR 4.02) and
much less likely to have parents who report that they
experience excellent or very good health (adj. OR .40) and are
much more likely to visit the emergency room two or more
times in a year (adj. OR 3.79) and experience problems
accessing needed care from a specialist doctor (adj. OR 1.44).
1
Conclusions: Frequent or severe headache is
disproportionately represented among CSHCN and those with
socio-emotional difficulties as well as among certain
demographic groups of children. These children face greater
functional impairments and challenges receiving quality care
than similar children without headache.
Implications for Policy, Delivery or Practice: Pediatricians
need information, skills and tools to assess and manage this
common and often complex disorder, including strategies to
coordinate care with the specialist doctors and mental health
providers who are also involved in care of these children. Little
is known about the population prevalence, characteristics or
health of US children with frequent or severe headache,
including their daily functioning and quality of care.
Understanding these issues will inform assessment, referral
and treatment guidelines. The National Survey of Children's
Health (NSCH) provides new information to address these
issues at the population level.
Primary Funding Source: Health Resources and Services
Administration, Maternal and Child Health Bureau
locations. In general, many programs have indicated children
and families are often receiving sub-optimal services because
less intensive services as opposed to no services are being
provided thus making waitlists appear shorter than they
actually are.
Of the 53 responding agencies, 74% prioritize their clients with
some specific guidelines. Referral date and child’s specific
needs appear to be the common determining factors of how
children are placed on the waiting lists. Similarly 72% routinely
update and audit their waitlists. However, only 32% of
responding agencies routinely collect information of the
impact of waiting on children and families and only 38%
conduct surveys on the satisfaction regarding on waiting time.
Conclusions: Data availability remains a major barrier for
waitlist assessment for early intervention services. Wait time
measures for early childhood intervention services have yet to
be clearly defined. This study provides a snap shot of current
waitlist information for these services in BC. As expected not
all programs appear to have a waiting list for services.
However, waiting for SLP and OT services appear to be
consistently a challenge to all service providers in the
province.
Implications for Policy, Delivery, or Practice: Unlike
hospital based services, waiting lists for early childhood
intervention services have received very little attention. In BC,
a provincial database system is greatly needed for
standardized waitlist and wait-time reporting for service
planning and resource allocation. Defining a common waittime measure should also be in high priority for future
research.
Primary Funding Source: WRTC, CIHR, HELP
„ Waiting lists and waiting time for early intervention
services for non-school age children in British Columbia
Herbert Chan, M.Sc., Sam Sheps, M.D., Bob Armstrong, M.D.
Ph.D.
Presented By: Herbert Chan, MSc, PhD Candidate,
Community Child Health Research, Healthcare &
Epidemiology, University of British Columbia, L408-4480 Oak
Street, Vancouver, BC, V6H 3V4; Tel: (604) 875-2433; Fax:
(604) 875-3569; Email: hwpchan@cw.bc.ca
Research Objective: To provide a descriptive summary of
waitlist information of early intervention services in British
Columbia (BC).
Study Design: A cross-sectional survey of agencies providing
early intervention services to children aged 0 to 6 in BC was
conducted in 2005. Agencies were asked to complete a postal
questionnaire regarding their waitlist management and waittime information.
Population Studied: Questionnaires were sent to 89 agencies
including public health units, child development centres and
individual programs that provide Infant Development
Programs (IDP), Supported Child Development Programs
(SCDP), Occupational Therapy (OT), Physiotherapy (PT)
and/or Speech-language services (SLP) to children aged 0-6 in
BC.
Principal Findings: A total of 53 agencies (60%) responded
to the survey. 36 of the 53 agencies provide IDP, 16 provide
OT, 17 provide PT, 27 provide SCDP and 26 provide SLP
services. Of the 53 responding agencies, only about 20 larger
agencies currently use a database system for client
information. The others are using either a simple spreadsheet
program or paper registry.
Not all programs indicated that there is a waitlist for services
in this survey. For example, for PT, IDP and SCDP, only about
50% of agencies indicated there is a wait for the services.
However, children who require SLP and OT services are more
likely to be put on a waitlist before obtaining any services. Of
all agencies providing SLP and OT interventions, 96%
indicated a waitlist for SLP services and 80% reported a
waitlist for OT services. Average wait-times for SLP
assessment range from 2 to 105 weeks depending on the
„ Perceived Unment Mental Health Needs by Caregivers
Huey Chen, Ph.D.
Presented By: Huey Chen, Ph.D., Assistant Professor, MHLP,
USF-FMHI, 13301 Bruce B. Downs Blvd, Tampa, FL 33612; Tel:
(813) 974-7409; Fax ; Email: chen@fmhi.usf.edu
Research Objective: To identify factors related to caregivers'
perceived unmet mental health need of their children.
Study Design: This study examined data from a mail survey
of caregivers of children participating in the Florida Medicaid
program. The Dillman method was used to obtain the data.
Data were collected from caregivers regarding their children’s
health/mental health conditions, using Child Health
Questionnaire subscale (CHQ) and Pediatric Symptom
Checklist (PSC), respectively and experiences of their
children’s use of health services in 2001.
Population Studied: The study includes 1107 children of age
between 5 and 18 who were reported to (1) child was eligible
for Medicaid benefits at the time caregiver responds to mail
survey; (2) need mental health services based on PSC score
>27, having a psychiatric disability condition, or caregivers
report, and (3) race/ethnicity of White, Black or Hispanic. Of
them 65.5% were boys. Their racial/ethnic distributions were
43.99%non-Hispancic White, 48.24% non-Hispanic Black, and
7.77% Hispanic. Logistic regression was used to examine
factors related to caregivers’ perception of unmet mental
health needs of their children of different race/ethnicities.
Principal Findings: Factors related to unmet mental health
needs include ethnicity, health conditions, both physical and
2
emotional status, caregivers’ level of trust in their children’s
care providers, and health plan.
Conclusions: Children of caregivers with a higher level of
trust in their children's health care providers were less likely to
experience unmet mental health needs. Hispanic children are
more likely to experience unmet mental health needs
compared to non-Hispanic White children.
Implications for Policy, Delivery, or Practice: Results of the
study suggest that building a trust relationship with caregivers
can reduce chance of unmet mental health needs among
children. In addition, early intervention is an important issue
among children’s mental health. It is important to health
caregivers recognize their children’s mental health needs
through culturally competent approach in order to foster early
intervention.
Primary Funding Source: Other, Florida Agency for Health
Care Administration
Principal Findings: The mean number of plans considered
was 4.1 per visit, standard deviation=3.4 and mean
deliberation length was 2.9 minutes, standard deviation=3.1.
Shared deliberation occurred in 35% of visits. In multivariable
models, more plans were considered and deliberation was
longer in visits by girls and older children, all p<0.05. Longer
visits were also associated with more plans considered and
with longer deliberations, both p<0.001. Fewer plans were
considered in visits to female physicians, p<0.05. Shorter
deliberations occurred in visits with college-educated parents
and visits with the mother present, both p<0.001, but these
parent factors did not impact number of plans considered. In
multivariable models, shorter visit lengths were associated
with reduced odds of shared deliberation, p<0.05.
Conclusions: Although the deliberative process comprised
about 25% of visit length and multiple plans were considered,
shared deliberation was not the predominant deliberative
style. Shorter visit length was associated with reduced
deliberation and with reduced odds of shared deliberation.
Both length of deliberation and number of plans considered
were associated with child and parent factors, including
gender-based patterns of participation.
Implications for Policy, Delivery, or Practice: Improving
participation in decision making may necessitate interventions
to increase shared deliberation such as longer visit lengths.
As gender-based participation patterns exist even among
children, interventions to improve participation may need to
begin early in life.
Primary Funding Source: AHRQ,
„ Deliberation in Pediatric Primary Care
Elizabeth Cox, M.D., Ph.D., Maureen A. Smith, M.D., Ph.D.,
M.P.H., Roger L. Brown, Ph.D.
Presented By: Elizabeth Cox, M.D., Ph.D., Center for
Women's Health Research, University of Wisconsin School of
Medicine and Public Health, 546 WARF, 610 Walnut St.,
Madison, WI 53726; Tel: (608) 263-9104; Fax: (608) 262-2820;
Email: ecox@wisc.edu
Research Objective: Patient participation in healthcare
decision making improves health outcomes, yet in pediatrics
both parents and children report not participating as they
would wish. Decision making includes information exchange
and deliberation to reach a decision. While information
exchange is commonly studied, to our knowledge, no prior
work has assessed parent or child participation in the
deliberative process. We examine both the amount and
sharing of the deliberative process by children, their parents
and physicians; and its association with child, physician and
parent factors.
Study Design: We analyzed data from videotapes of visits and
physician/participant surveys of sociodemographics, practice
characteristics and healthcare utilization. Using the Observer
System, the timing, speaker and recipient of utterances
reflecting proposed plans as well as agreements and
disagreements with plans were coded by a pair of independent
raters. Discrepancies were resolved by application of coding
rules and consensus. Two measures assessed the amount of
deliberation--the total number of plans considered and the
length of deliberation, operationalized as the longer of either
the time between the first and final plans considered or time
between the first plan considered and final agreement with a
plan. Shared deliberation reflected active parent or child
involvement in deliberation (yes/no) through either proposing
a plan for consideration or disagreeing with a physicianproposed plan. Multivariable negative binomial regression
and log gamma generalized linear models were used to
examine the relationship of child, physician, parent and visit
factors to either number of plans considered or the length of
deliberation. Multivariable logistic regression was used to
analyze the association of shared deliberation with these
factors. All analyses accounted for clustering by physician.
Population Studied: 100 children visiting 1 of 15 family
physicians or pediatricians
„ Improvement in Key Indicators of Access and Health
Status of Ohio’s Children
Jessica Diggs, B.S., Siran Koroukian, Ph.D., Mireya Diaz, Ph.D.
Presented By: Jessica Diggs, B.S., MD/PhD Candidate in
Health Policy, Epidemiology and Biostatistics, Case Western
Reserve University School of Medicine, 10900 Euclid Avenue,
Cleveland, OH 44106-4945; Tel: 216-791-1416; Fax: 216-3683970; Email: jessica.diggs@case.edu
Research Objective: The aim of this study is to determine the
impact of Medicaid expansions and the implementation of
SCHIP in Ohio on key indicators of access and health status.
These indicators include: being uninsured, being enrolled in
Medicaid, being income eligible for Medicaid but uninsured,
having no usual source of care, having an unmet healthcare
need, and reporting fair or poor health status.
Study Design: This is a secondary analysis of data from the
Ohio Family Health Survey (OFHS), a statewide telephone
survey of Ohio’s non-institutionalized population. Two years
of cross-sectional survey data were compared, using the
results of the 1998 survey to represent the pre-expansion
period and the 2004 survey to represent the post-expansion
period. Bivariate and multivariable analytic techniques were
used to determine and compare the relative proportions of
children with the indicators of interest and the likelihood of
having those indicators in the pre and post expansion period.
Multivariate models were adjusted for relevant child
demographics.
Population Studied: The study population included all
children ages 0-17 residing in Ohio. The 1998 data contains a
sample of 5,743 children and the 2004 data contains 11,542
child records, which upon weighting, can be generalized to
3
represent 2,838,580 and 2,170,174 children in 1998 and 2004
respectively. Each child record is paired with an adult record in
the same household. Analyses requiring the use of household
variables were limited to records where the adult respondent
was the parent or step-parent of the child.
Principal Findings: There was a statistically significant
improvement for all indicators of healthcare access and health
status over the expansion period. The proportion of children
having Medicaid insurance increased from 8.19% to 23.84%
and the percentage of children income eligible for Medicaid
increased from 25.44% to 41.41%, reflecting the coverage
expansions. Multivariate analyses adjusted for child and
parent demographics revealed a significant decrease in the
likelihood of being income eligible for Medicaid but
uninsured, (Adjusted Odds Ratio (AOR):0.42 , 95%
Confidence Interval (CI):0.32-0.57) having no usual source of
care (AOR: 0.54, 95%CI: 0.42, 0.69), having an unmet
healthcare need (AOR: 0.24, 95%CI: 0.18-0.32), or reporting
fair or poor health status (AOR: 0.28, 95%CI: 0.19-0.42) when
comparing the 2004 to 1998 data.
Conclusions: There were significant changes in key indicators
of the healthcare access and health status of Ohio’s children
during the Medicaid expansion period. A larger proportion of
children are enrolled in Medicaid and children have a greater
likelihood of having access to a usual source of care and
having their healthcare needs met. These results are
consistent with the goals of the Ohio Medicaid expansion.
Implications for Policy, Delivery, or Practice: These findings
are evidence of the success of the Medicaid expansion and are
a testament to the need for these types of public health
insurance programs. The current expansions must be
protected to ensure the continued health and access of Ohio’s
children. These findings also suggest that continued efforts to
enroll eligible children and children with limited access to
healthcare in Medicaid are beneficial and worthwhile.
Primary Funding Source: No Funding Source
analyszed OSHPD Annual Hospital Financial and Patient
Discharge data.
Population Studied: Children and youth 0 - 19 in California
counties from 1999 - 2003 enrolled in subsidized insurance.
Principal Findings: * In California from the end of 1999 to
the end of 2003, over one million children and youth were
added to subsidized insurance programs - Medi-Cal, Healthy
Families, Healthy Kids and CalKids. By 2003, the percent
enrolled in government and privately subsidized coverage
grew to nearly 40 percent statewide.
* The total inflation-adjusted dollar volume of uncompensated
care expenditures for children and youth decreased over the
five-year study period from $142 in 1999 to $118 million in
2003, a decline of over 17 percent.
* As the percent of children and youth covered by Medi-Cal,
Healthy Families, Healthy Kids and CalKids increased during
the study period, the amount of uncompensated care per child
and youth declined significantly.
* In 2003 dollars, hospitals saved $47 in uncompensated care
expenditures for every child and youth enrolled into subsidized
insurance.
* Of the total uncompensated care expenditures for uninsured
residents in California, the proportion spent on children and
youth was relatively small, representing only 4.5 percent of the
total in 2003.
Conclusions: * Insurance coverage expansions for children
and youth from 1999 to 2003 across all counties contributed
to a significant decline in hospital uncompensated care
expenditures.
* Over the five-year period, the additional 1.1 million children
and youth added to subsidized insurance reduced hospitals’
uncompensated care expenditures by an estimated $48
million.
* City/county hospitals consistently provided a
disproportionate share of uncompensated care during the
five-year period. Of all non-profits, children's hospitals
provided the greatest share.
Implications for Policy, Delivery, or Practice: * At 4.5
percent of total uncompensated care expenditures and
representing less than one percent of total net revenues, the
amount spent on uninsured children and youth is very modest
and may not capture the attention of hospital leadership.
* But when multiplied by the number of enrollments in a
county or statewide, the savings to hospitals are much more
compelling. In five years of insurance coverage expansions,
California’s hospitals saved some $48 million and increased
insurance enrollments bring new revenues to hospitals and
other providers.
* California taxpayers supported, either directly or indirectly,
nearly all of the $117 million spent on uninsured children and
youth in 2003. These resources could be redirected to support
enrollment efforts into government-sponsored insurance and
premium subsidies.
* The impressive insurance coverage gains for children and
youth from 1999 – 2003 can be attributed to the SCHIP
program, eligibility changes to Medi-Cal, new county
programs for ineligible children and electronic enrollment
innovations. In addition, concerted and coordnited outreach
efforts contributed to increased enrollments.
Primary Funding Source: Other, California HealthCare
Foundation
„ Effect of Children's Insurance Enrollment on Hospital
Uncompensated Care in California
Leonard Finocchio, Dr.P.H., Lisa Maiuro, Ph.D., M.S.P.H., Anil
Bamezai, Ph.D., Jason Lim, M.P.H.
Presented By: Leonard Finocchio, Dr.P.H., Senior Program
Officer, Public Finance and Policy, California HealthCare
Foundation, 1892 11th Avenue, San Francisco, CA 94122-4604;
Tel: 415.254.9142; Fax: ; Email: lenf@sfsu.edu
Research Objective: This research set out to estimate the
total annual cost of uncompensated care accounted for by
California’s uninsured children and youth and how
uncompensated care has been affected by the overall change
in enrollment into government-sponsored and privately
subsidized insurance programs.
Study Design: Using the county as the unit of analysis, we
first generated descriptive statistics for the dependent variable
– total uncompensated care for children and youth. This
analysis examined total dollar volumes and per capita
amounts for each county and the percent change from 1999 to
2003. Second, we specified a fixed-effects general linear
regression model to test for the effect of the percent of county
children and youth covered by subsidized insurance. We
controlled for hospital type and staffed beds per capita. We
4
„ Development of Measures of the Quality of Emergency
Department Care for Children
Astrid Guttmann, M.D.C.M, M.Sc., Asma Razzaq, M.P.H,
Patty Lindsay, B.Sc.N., Ph.D., Brandon Zagorski, M.Sc.,
Geoffrey M Anderson, M.D., Ph.D.
used by other jurisdictions interested in reporting Emergency
Department performance either as is, or as a starting point for
similar panel processes with relevant stakeholders. The list
also provides Emergency Department managers and clinicians
with tools to focus quality improvement.
Primary Funding Source: , Ontario Hospital Report Research
Collaborative
Presented By: Astrid Guttmann, M.D.C.M., M.Sc., Scientist, ,
Institute for Clinical Evaluative Sciences, G1 06, 2075 Bayview
Avenue, Toronto, ON, M4N 3M5; Tel: (416) 480-4055 ext
3783; Fax: (416) 480-6048; Email: astrid.guttmann@ices.on.ca
Research Objective: To use a systematic process to develop
measures of the quality of Emergency Department care for
children that are 1. based on research evidence and expert
opinion, 2. representative of a range of conditions treated in
most Emergency Departments, 3. based on a link between
process and outcomes and 4. feasible to measure.
Study Design: We used a panel of providers and managers
from a number of Emergency Department settings with
reference to population-based data of Emergency Department
utilization by children, to identify a series of common
conditions, across levels of patient acuity, which could be
targets for quality improvement efforts. We used a structured
panel process informed by a literature review to 1. identify
condition-specific links between processes of care and defined
outcomes, and 2. select and define measures to assess these
process-outcome links. We determined the feasibility of
calculating these measures using routinely collected
population-based data of all Emergency Department visits for
Ontario, Canada.
Population Studied: All Emergency Department visits for
children 0-19 years (1,226,849 visits) in Ontario, Canada for
2003/4.
Principal Findings: A panel identified 18 clinical conditions
for indicator development. The structured panel process
identified 61 condition-specific links between process and
outcomes for 14 of these conditions. After two rounds of
ratings the panel defined 68 specific clinical performance
measures for the following 12 conditions: ankle injury, asthma,
bronchiolitis, croup, adolescent depression/mood disorders,
diabetes, fever, gastroenteritis, minor head injury, neonatal
jaundice, seizures, and urinary tract infections. These
conditions covered a range of acuity and age groups, and
accounted for 38 % of all pediatric Emergency Department
visits. Using routinely collected data it was possible to
calculate 19 measures, covering 9 conditions, representing
21% of all visits. There was significant variability in the
measures across hospitals in Ontario.
Conclusions: Performance measures are essential
components of public reporting and quality improvement.
Using a structured panel process, data on Emergency
Department utilization and a literature review, it was possible
to identify common clinical conditions for which processes in
the Emergency Department have an impact on outcomes,
define and measure some indicators of care using existing
administrative data. Developing benchmarks for these
measures will require a number of strategies.
Implications for Policy, Delivery, or Practice: This is the first
set of comprehensive performance measures of pediatric
Emergency Department care relevant across all settings.
Locally these measures will be used in the Ontario Hospital
Report which routinely reports on the quality of care of all
acute care hospitals in Ontario. This list of measures could be
„ Making Sense of the Numbers: Estimating Children with
Life-Threatening Conditions in the Military Health System
Janice Hanson, Ph.D., Ed.S., Jason Cervenka, B.A., Virginia
Randall, M.D., M.P.H.
Presented By: Janice Hanson, Ph.D., Ed.S., Assistant
Professor, Medicine, Uniformed Services University of the
Health Sciences, 4301 Jones Bridge Road, Bethesda, MD
20814; Tel: 301-295-9726; Fax: 301-295-2059; Email:
jhanson@usuhs.mil
Research Objective: To estimate the number of children
living with life-threatening conditions in the Military Health
System—MHS—to inform program planning.
Study Design: The researchers used two methods to estimate
the number of children with life-threatening conditions and
compared results from the two methods. First they identified a
definition of life-threatening conditions useful for program
planning, found three prevalence estimates--0.001, 0.0012,
0.00172--from programs that employed a similar definition
and counted children by reviewing health records, and they
applied these prevalence estimates to the total number of
children eligible for care in the MHS. Second, the researchers
identified representative conditions and associated ICD-9
codes for the chosen definition and did a data pull to count
the number of children with these ICD-9 codes in an existing
database of MHS beneficiaries. The database contains claims
data integrated with eligibility and enrollment data.
Population Studied: The population consists of all children
with chronic life-threatening conditions who are eligible for
care in the MHS. To define this group, the researchers chose
the four-part description referenced by Himelstein et al. in
2004. The four groups of conditions are 1. progressive
conditions in which treatment is exclusively palliative from
diagnosis; 2. conditions requiring long periods of intensive
treatment aimed at prolonging life and improving quality of
life; 3. conditions for which curative treatment is possible but
may fail; 4. conditions with severe, non-progressive disability
causing extreme vulnerability to health complications.
Representative diagnoses were chosen for each part of the
definition as follows: 1. spinal muscular atrophy, trisomy 13
and 18, severe asphyxia; 2. cystic fibrosis, muscular dystrophy;
3. any childhood leukemia or cancer; 4. spastic quadriplegia,
tracheostomy. Two experienced pediatricians agreed on a list
of 21 ICD-9 codes to count children with these diagnoses who
had received healthcare in the MHS during the study period,
2002-2003. The diagnoses and ICD-9 codes were chosen to
capture most of the children with complex health conditions
that were life-threatening, avoid duplicate counts and identify
children who needed palliative care.
Principal Findings: There were 2,641,554 children ages 0-24
enrolled in MHS at the time the count was done. The
prevalence estimates from the literature applied to this
number yielded an estimate of 2642 to 4543 children with lifethreatening conditions, a rate of 0.001 to 0.00172/year. The
5
count in the MHS database yielded the following numbers of
children with life-threatening conditions ages 0-24 identified
with the designated ICD-9 codes: progressive conditions 728;
conditions requiring intensive treatment 964; conditions with
possible cures 1239; severe, nonprogressive conditions
causing extreme vulnerability 940; total 3871--0.147 percent.
Conclusions: A practical method has been identified to
estimate the numbers of children in the MHS who need care
due to a life-threatening condition.
Implications for Policy, Delivery, or Practice: The
methodology can be applied to a region served by the MHS,
the entire MHS, or another healthcare system planning a
program for a similar population of children.
Primary Funding Source: Other, Department of Defense
use, etc.); lack of validation from primary care experience of
pediatric inpatients.
The presence of fundoplication may serve as a starting point
for identifying CSHCN in inpatient data sets. Additional
criteria need to be articulated and tested for refining and
expanding the cases extracted from inpatient administrative
data sets to study CSHCN.
Implications for Policy, Delivery, or Practice: These results
will provide a scheme for pediatric health services researches
to use inpatient administrative data to study aspects of
hospitalization of CSHCN.
Primary Funding Source: No Funding,
„ Factors Influencing Care Coordination for CSHCN
Brenda Holtzer, Ph.D., M.S.N., R.N., Brenda Holtzer, Ph.D.,
M.S.N., R.N., Meg Johantgen, Ph.D., M.S.N., R.N., Jeanne
Geiger-Brown, Ph.D., M.S.N., R.N., Albert Crawford, Ph.D.,
M.B.A., M.S.I.S.
„ Finding CSHCN in Inpatient Administrative Databases Is Fundoplication a Marker?
Samuel Hohmann, Ph.D.
Presented By: Samuel Hohmann, Ph.D., Senior Research
Specialist, Information Architecture, University HealthSystem
Consortium, 2001 Spring Road, Oak Brook, IL 60523; Tel:
(630) 954-1740 Email: hohmann@uhc.edu
Research Objective: Examine the viability of using
fundoplication as a marker for identifying pediatric inpatient
stays of CSHCN.
Study Design: Retrospective cohort study.
Population Studied: Using UHC's Clinical Data Base,
pediatric (age < 17 years) discharges that had a fundoplication
(ICD-9 procedure code 44.46 or 44.47) were identified. These
were linked to all hospitalizations at the index academic
medical center between 2003 and 2005, and patterns of
hospitalizations before and after the index hospitalization
were analyzed.
Principal Findings:
Half of the more than 3,000 index hospitalizations (when a
fundoplication procedure was performed) were among
patients between 1 and 17 years of age. One third were less
than one year of age but more than 1 month of age. The
balance were less than one month of age.
The principal diagnosis most often associated with index
hospitalizations was esophageal reflux (ICD-9 diagnosis code
530.81). Another third had esophageal reflux as a secondary
diagnosis. Other frequent diagnoses included failure to thrive,
convulsions, aspiration pneumonia, perinatal chronic
respiratory disorder, and various feeding problems.
There were 1.5 times as many other hospitalizations of the
index children in the study period although only half of the
index children had multiple hospitalizations. The most
frequent reasons for other hospitalizations included metabolic
and nutritional disorders, GI disorders, respiratory infections,
pneumonia or bronichitis, and asthma.
These children's stays far exceeded the consumption of
resources compared to other children with similar reasons for
hospitalization. Moreover, their total inpatient resource
utilization in the study period was substantial. This cohort
also included a much higher proportion of length of stay
outliers than other pediatric patient cohorts with the same
reason for hospitalization.
Conclusions: Limitations - only hospitalizations at hospitals
in UHC database; inpatient care only (LOS, cost, pharmacy
Presented By: Brenda Holtzer, Ph.D., M.S.N., R.N., Faculty,
Department of Nursing, Thomas Jefferson University, College
of Health Professions, 130 S. 9th Street, 1209 Edison Bldg.,
Philadelphia, PA ; Tel: (215) 503-7553; Fax: (215) 503-0376;
Email: Brenda.Holtzer@jefferson.edu
Research Objective: Children with Special Health Care Needs
(CSHCN) often require diverse and extensive health care
services, accounting for more than half of the medical
expenditures in pediatrics. Care coordination is promoted as
a way to insure appropriate utilization of services and increase
quality, yet there is little evidence of the effectiveness of
coordination. This study explored factors leading to parent
perceptions of CSHCN needing and receiving care
coordination services. It then examined whether these services
made a difference relative to outcomes for the children and
their families.
Study Design: The design for this study was a descriptive
correlational design. Using procedures for complex sample
design, bivariate and multivariate analyses were done to
determine characteristics of CSHCN that were most influential
in their needing and then receiving care coordination. Logistic
regression models examined whether receiving care
coordination made a difference in the prevalence of unmet
needs, communication, and out of pocket expenses.
Population Studied: CSCHN whose parents stated they
needed care coordination (N=4,524; 1.6 million weighted),
were studied. Data from The National Survey of Children with
Special Health Care Needs (NSCSHCN) (2001-2002), and
public files for State Title V funding percentages for CSHCN
were used in this study.
Principal Findings: Only 11.7% of families of CSHCN
perceived a need for care coordination. Of those perceiving a
need, 87.9% reported receiving it. Older age, having a usual
source of care, and poverty level below 200% increased the
likelihood of not receiving it, even when controlling for severity
of illness and changing needs. Type of insurance, receiving
Title V funding, state generosity, and rural location had no
significant effects. Not receiving care coordination was found
to decrease likelihood of having needs met, with the strongest
effect for receipt of prescription medications and specialist
care. Likewise, families not receiving care coordination
reported significantly lower levels of communication and
significantly higher out of pocket expenses.
6
Conclusions: Nearly 90% of the CSHCN families who
perceived a need for care coordination received it. However,
the variations suggest that some groups may not have access
to it. The significant relationship of care coordination to
unmet meets, communication, and out of pocket expenses
provides evidence of effectiveness. However, the measures of
care coordination need to be improved and subsequent
analyses of the NSCSHCN should examine how state and
local programs influence outcomes.
Implications for Policy, Delivery, or Practice: While care
coordination is mandated by Title V and Medicaid programs,
the process of care coordination has not been defined in
terms of who does it and where and when it occurs. The
study findings suggest that CSHCN receiving Title V and
Medicaid are most likely to receive care coordination. In
addition, having a usual source of care is consistent with
receiving care coordination.
Implications for policy include the need for States to continue
evaluating the organization of care coordination services for
CSHCN, including the collaboration between Title V and
Medicaid, Part C programs in meeting educational needs of
CSHCN. As funding decreases, CSHCN are likely to enroll and
disenroll more often from public programs. This may
influence the continuity and coordination of services and
needs to be monitored. Implications for practice include the
need to value the role of care coordinator and incorporate it
into all practice settings. Also, while no more resources may
be devoted to these programs, transition plans and
coordination can be improved, particularly for older children
and adolescents.
Primary Funding Source: , Intramural support.
or severe headache (3.2%-7.7% across states). This rate varies
across age, sex, race and household income groups. Over 12%
of children with special health care needs (CSHCN) and 14.8%
of those with moderate or severe socio-emotional difficulties
experience headache. Children with headache are much more
likely to miss school (adj. OR 2.89) and much less likely to
have parents who report that they experience excellent or very
good health (adj. OR .56) or have health care that meets
criteria for being a medical home, controlling for age, sex,
race, household income and special needs status.
Conclusions: Frequent or severe headache is
disproportionately represented among CSHCN and those with
socio-emotional difficulties as well as among certain
demographic groups of children. These children face greater
functional impairments and challenges receiving quality care
than similar children without headache. Pediatricians need to
be aware of this information and obtain the skills and tools to
assess and manage this common and often complex disorder.
Implications for Policy, Delivery, or Practice: Pediatricians
need information, skills and tools to assess and manage this
common and often complex disorder. Little is known about
the population prevalence, characteristics or health of US
children with frequent or severe headache, including their daily
functioning and quality of care. Understanding these issues
will inform assessment, referral and treatment guidelines. The
National Survey of Children's Health (NSCH) provides new
information to address these issues at the population level.
Primary Funding Source: HRSA,
„ Defining an Evidence-Based Work Environment for
Nursing
Anne Marie Kotzer, Ph.D., R.N., Kerry Arellana, N.D., B.S.N.,
R.N.
„ New Population-Based Findings on Children with
Frequent or Severe Headache: Assessment of prevalence,
characteristics, health outcomes and quality of care from
the National Survey of Children's Health
Thomas Koch, M.D., Christina Bethell, Ph.D., M.P.H., M.B.A.
Presented By: Anne Marie Kotzer, Ph.D., R.N., Nurse
Researcher, Nursing Research and Education, The Childen's
Hospital, 1056 East 19th Ave., B110, Denver, CO 80218; Tel:
303-861-6984; Fax: 303-837-2779; Email:
kotzer.annemarie@tchden.org
Research Objective: A direct relationship has been
demonstrated between nurse job satisfaction, retention,
turnover, patient safety and elements of the nurses’ work
environment. However, administrative efforts to alter the work
environment may not be consistent with nurses’ assessment
of what is important. The purpose of this study was to
describe and compare staff nurses’ perceptions of their real
(current) and ideal (preferred) work setting.
Study Design: A descriptive survey design utilized a
demographics questionnaire and the Work Environment Scale
(WES) by Moos (1994). The WES consists of ten subscales
within three dimensions: Relationship Dimension
(involvement, peer cohesion, supervisor support), Personal
Growth Dimension (autonomy, task orientation, work
pressure), and System Maintenance and Change Dimension
(clarity, control, innovation, physical comfort). Two separate
assessment forms measured nurses’ perceptions of their real
(R) and their ideal (I) work environment. The instrument
consists of 90 items using a two-point (true/false) response.
Descriptive and inferential statistics summarized the
demographic characteristics of the sample and compared
mean differences between real and ideal subscale scores.
Presented By: Thomas Koch, M.D., Professor and Division
Chief, Pediatrics, Division of Neurology, Oregon Health and
Science University, Mailcode CDRCP, 707 SW Gaines Street,
Portland, OR 97239-3098; Tel: 5034946545; Fax: 5034942475;
Email: kocht@ohsu.edu
Research Objective: To estimate the population prevalence of
frequent or severe headache experienced by children age 3-17
and to assess if these children experience greater functional
impact and/or issues with health care access and quality
compared to similar children who do not experience
headache.
Study Design: The prevalence and characteristics of children
with frequent or severe headache was estimated using data
from the 2003-2004 NSCH (n = 102,000 weighted to
represent all children age 0-17). Logistic regression analysis
was used to assess the impact of headache on health
outcomes (e.g. missed school, overall health status) and
aspects of quality of care (e.g. medical home) after adjusting
for age, sex, race, household income and special health care
needs.
Population Studied: 102,000 randomly identified children
living in US households.
Principal Findings: Nationally, 5.6%, or 3.4 million, children
age 3-17 have parents who report that they experience frequent
7
Population Studied: A convenience sample of 385 Level I – V
staff nurses on five inpatient units and the float team at a
large metropolitan tertiary care pediatric hospital was invited
to participate.
Principal Findings: The overall survey response rate was
40%. The majority of nurses worked full-time, ranged in age
from 20 to 35 years, and worked as an RN < 6 years. Possible
WES subscale scores ranged from 0 – 9. Units reported high
levels of Involvement, Peer Cohesion, Task Orientation, and
Managerial Control (6 to 9). Scores for Work Pressure and
Autonomy were moderate-high (3 to <9) and Physical
Comfort, Supervisor Support, Clarity and Innovation were
moderate (3 to <6). Across all units, Involvement scored
highest and Physical Comfort lowest. The Involvement
subscale represents the “extent to which employees are
concerned about and committed to their jobs”, and Physical
Comfort denotes the “extent to which physical surrounding
contribute to a pleasant work environment”. Statistically
significant differences were seen between all real and ideal
subscale scores except for Managerial Control on three units.
Conclusions: Despite moderate-high work pressure reported,
staff nurses affirmed a highly positive work environment on
their units. Significant differences between real and ideal
subscale scores suggest that study nurses aspire to improve
their work environment and propose areas for targeted
interventions.
Implications for Policy, Delivery, or Practice:
Understanding dimensions of the work environment that need
improvement, involving individuals in making and evaluating
change, and assessing the outcomes of those changes,
supports an enhanced work environment to retain qualified
nursing staff. Plans are underway at the unit and
organizational level to identify and prioritize areas for
improvement, establish goals, and develop action plans for
change.
Primary Funding Source: Other, The Children's Hospital
Research Institute and Sigma Theta Tau, Alpha Kappa
Chapter-at-Large
to the household level. Analyses were conducted on
characteristics of households that did or did not report a
member experiencing an episode of influenza illness in a
survey year. The significant level of statistical tests for the
differences was set at 0.05.
Population Studied: 28,173 healthy households were
identified from MEPS consolidated files over 7 years,
representing an estimated 42.2 million US civilian noninstitutional healthy households with at least two household
members.
Principal Findings: On average, 11.3% of healthy households
reported experiencing influenza annually over 7 years. These
households were significantly larger with a mean of 3.3 family
members compared to 3.0 members in households that did
not experience influenza. T-tests also indicate that the
households that experienced influenza had a significantly
higher number of students and children aged 17 years or
younger. No significant difference was found in the average
numbers of adults. Comparing the households that did report
an influenza case in the survey year to the households that did
not, 24.4% versus 16.8% of households had two or more
students, 6.8% versus 4.4% had three or more students and
62.7% versus 49.5% had children age 17 years or younger.
These differences in the percentages are statistically
significant based on Chi Square and Cochran mantel Haenszel
tests.
Conclusions: Healthy households in which one or more
members experienced influenza were significantly larger and
more likely to have children present compared to households
where influenza was not reported. The presence and higher
number of children was significantly associated with influenza
incidence at the household level in healthy US households.
Implications for Policy, Delivery, or Practice: These results
suggest children play an important role in the incidence of
annual influenza epidemics. Routine influenza immunization
recommendations should be considered for the pediatric
population.
Primary Funding Source: NO FUNDING SOURCE.,
„ Children and Household Level Incidence of Influenza
Su Li, M.D., M.S., M.H.S., Shelah Leader, Ph.D., Jeffrey J.
Stoddard, M.D.
„ Children with Autism: Morbidity, Co-Morbidity and
Family Burden
Gregory Liptak, M.D., M.P.H., Christine M. Wade, Psy.D.,
Melissa A. Thingvoll, M.D., Lauren Benzoni, B.S., Karen W.
Nolan, P.T., M.S., P.C.S., Daniel W. Mruzek, Ph.D.
Presented By: Su Li, M.D., M.S., M.H.S., Medical Affairs
Analyst, Medical Affairs, MedImmune Inc., One Medimmune
Way, Gaithersburg, MD 20878; Tel: (301) 398-4936; Fax: (301)
398-9936; Email: lis@medimmune.com
Research Objective: Tens of millions of people in the US
experience influenza annually. Children are considered major
disseminators of influenza within households as well as
communities. However, healthy children older than 23 months
are not recommended for routine influenza vaccination under
the current guideline of the CDC’s Advisory Committee on
Immunization Practice. This study documents the association
between the presence of children and the incidence of
influenza in healthy US households.
Study Design: Data from the Medical Expenditure Panel
Survey, referred to as MEPS, from 1996 to 2002 were
analyzed. All households with at least two members in which
each member was described as healthy were included.
Influenza cases were defined by ICD 9 code 487 in the medical
condition files. Data for each family member were aggregated
Presented By: Gregory Liptak, M.D., M.P.H., Professor of
Pediatrics, Pediatrics, University of Rochester Medical Center,
601 Elmwood Avenue, Rochester, NY 14642; Tel: (585) 2755962; Fax: (585) 275-3366; Email:
Gregory_Liptak@urmc.rochester.edu
Research Objective: The purpose of this study was to: a)
investigate the occurrence of clinical conditions in children
with autism, and b) quantify the burden of care experienced by
families of children with autism, compared to the general
population.
Study Design: Secondary analysis of data obtained from the
National Survey of Children’s Health (2003-04), a nationally
representative sample developed by the Centers for Disease
Control and Prevention (102,353 interviews, weighted sample
size 73,162,900). Data were analyzed using SUDAAN
statistical software. Both parametric and non-parametric
statistical analyses were employed.
8
Population Studied: 473 children (weighted sample size
309,793) were identified by their families as having autism.
Principal Findings: 11% of children with autism were reported
to have fair or poor general health, compared to 3% of
children without autism. Conditions related to the definition of
autism were more common in children with autism. These
(compared with rates for those without autism) included
difficulties with emotions or behavior (89% v. 17%), learning
disability (78% v. 9%), and developmental delay or physical
impairment (68% v. 3%) [all p<0.001]. In addition, other
health problems were found to have a significantly higher
prevalence in children with autism, e.g., depression or anxiety
(38% v. 4%), bone joint or muscle problem (22% v. 3%), and
gastrointestinal allergy (14% v. 4%) [all p<0.001].
Furthermore, a significantly greater percentage of parents of
children with autism reported that their children were much
harder to care for than most children of the same age (54% v.
6%); parents had to make greater sacrifices than expected to
meet their children’s needs (38% vs. 14%); and the mental
and emotional health of the child put a great burden on the
family (30% vs. 9%) [all p<0.001].
Conclusions: Children with autism are at significantly higher
risk for a broad range of health concerns, including mental
health problems and physical illness. Also, families of children
with autism experience significantly greater stressors across a
broad range of categories (e.g., mother’s self-reported
emotional and mental health).
Implications for Policy, Delivery, or Practice: Health and
education professionals should be especially vigilant for comorbid health concerns in children with autism. Additionally,
providers must remain attentive to the potential impact of the
children’s disabilities on their families’ well-being. Systems of
care that address the needs of children with autism need to
provide access to medical, mental health, and related services.
Primary Funding Source: Other, DHHS: Maternal and Child
Health Bureau; Leadership Education for Neurodevelopmental
Disabilities and Related Disorders.
Population Studied: 473 children (weighted sample size
309,793) were identified by their families as having autism.
Principal Findings: The prevalence of autism per 1,000 was
reported to be 2.60 for Latinos and 4.98 for non-Latinos
(p<0.001), with a lower rate for Latinos of all ages. Autism
was more common in children of mothers born in the United
States than in those with mothers born outside the U.S.
(p<0.001). Families of Latino children with autism reported
difficulty getting primary medical care or advice, problems
accessing specialists, and getting care in a timely fashion (all
p<0.003). The prevalence of autism per 1,000 in AfricanAmerican children was similar to that for non-AfricanAmericans (4.65 v. 5.15). Families of African-American children
with autism were significantly less likely to identify one or
more persons that they would think of as their child’s personal
doctor, get care in a timely fashion, and receive preventive
medical care (all p< 0.003).
Conclusions: Latinos have a significantly lower reported
prevalence of autism than non-Latinos. This may be due to
genetic differences (not confirmed in other studies) or to a
lower rate of diagnosis. The lower rate of diagnosis may be
related to disparities in care. Both Latinos and African
Americans are less likely than white, non-Latinos to utilize or
have access to specific aspects of healthcare.
Implications for Policy, Delivery, or Practice: Policy-makers
and practitioners need to be aware of problems with
diagnostic assessments and access to care among certain
minorities. Policies should be designed to maximize
information, access to diagnostic services, and to healthcare.
Communication may be a special problem for Latinos.
Miscommunication between white primary care providers and
minority patients can occur in many ways, potentially
contributing to disparities in healthcare. Improvements in
continuity of care, time spent in the clinical encounters, and
the provision of information and support should improve the
quality of and satisfaction with healthcare services for all
children with autism and their families.
Primary Funding Source: Other, DHHS: Maternal and Child
Health Bureau; Leadership Education for Neurodevelopmental
and Related Disabilities
„ Disparities in Health Care among Children with Autism
Gregory Liptak, M.D., M.P.H., Lauren Benzoni, B.S., Daniel W.
Mruzek, Ph.D., Karen W. Nolan, P.T., M.S., P.C.S., Melissa A.
Thingvoll, M.D., Christine M. Wade, Psy.D.
„ Family Costs of Child Mental and Developmental
Conditions
Frances Lynch, Ph.D., M.S.P.H., Jennifer Schneider, M.P.H.,
Nancy Vuckovic, Ph.D., Alison Firemark, M.S., David
Castleton, M.S., Lynn DeBar, Ph.D.
Presented By: Gregory Liptak, M.D., M.P.H., Professor,
Pediatrics, Univeristy of Rochester Medical Center, 601
Elmwood Avenue, Rochester, NY 14642; Tel: (585) 275-5962;
Fax: (585) 275-3366; Email:
Gregory_Liptak@urmc.rochester.edu
Research Objective: Racial and ethnic disparities affect health
care in the United States. The purpose of this study was to
test the hypotheses that: 1) disparities exist in the prevalence
of autism among children of traditionally disadvantaged
populations, specifically non-white ethnic groups, and 2)
disparities exist in utilization of and access to care for families
of children with autism.
Study Design: Secondary analysis of data obtained from the
National Survey of Children's Health (2003-4), a nationally
representative sample developed by the Centers for Disease
Control and Prevention (102,353 interviews, weighted sample
size 73,162,900). Data were analyzed using SUDAAN
statistical software. Both parametric and non-parametric
statistical analyses were employed.
Presented By: Frances Lynch, Ph.D., M.S.P.H., Investigator, ,
Center for Health Research, Kaiser Permanente
Northwest/Hawaii, 3800 N Interstate Ave, Portland, OR
97227; Tel: 503-335-6654; Fax: 503-335-2424; Email:
frances.lynch@kp.org
Research Objective: To examine the types of financial and
time costs experienced by families of children with mental
health and developmental conditions and to compare these
costs for publicly and privately insured families. This research
is part of a larger project that is developing an survey
instrument to measure the family costs associated with child
mental health problems that could be used to improve costeffectiveness analyses of interventions, and analyze financial
policies affecting children with mental health conditions. A
first step in the development of the instrument is making sure
9
we have identified all relevant financial and time costs to
families.
Study Design: The study conducted in-depth qualitative
interviews with parents of children diagnosed with three
categories of mental health condition: externalizing disorders,
internalizing disorders, and pervasive developmental
disorders. The in-depth qualitative interviews explored
families’ experiences dealing with these illnesses, focusing on
the major domains suggested by household production
theory: monetary expenditures, time spent in illness related
activities, parent employment issues related to illness
management, and family resources used in the production of
child mental health.
Population Studied: Study subjects included a total of 53
families of children with mental health or developmental
conditions recruited from two health services organizations in
Portland, Oregon. Thirty-one families with private insurance
coverage were recruited from Kaiser Permanente Northwest, a
large not-for-profit HMO and 22 families with public insurance
were recruited from a local not-for-profit community mental
health agency, Lifeworks Northwest.
Principal Findings: Families in both the publicly insured and
the privately insured samples reported similar financial and
time costs. Common financial costs included costs of
medications, transportation to services, replacement of
household and personal property of family and others, and
special food to address the condition itself or the side-effects
of medications. Some of the most frequently reported time
costs were 1) time managing the child’s condition at home, 2)
services and seeking services for child, 3) coordinating
services for child at school, and 4) time missed from work to
attend meetings or care for child when symptoms were
elevated.
A few important differences in the publicly and privately
insured samples were also identified. For instance, the impact
of the condition on the families finances was sometimes
much more dramatic for publicly insured families, for example
several publicly insured families reported making tradeoffs
between paying for treatment related costs and paying for
housing or food.
Conclusions: Families of children with mental health and
developmental conditions experience a wide range of financial
and time costs. Although the study identified some
differences in the types of costs experienced by publicly and
privately insured families, differences were typically in the
magnitude of the costs rather than the type of costs
experienced.
Implications for Policy, Delivery, or Practice: This research
provides an indepth qualitative description of the types of
financial and time costs experienced by families of children
with mental health and developmental conditions.
Understanding of these costs may help in evaluating new
programs and policies for the care of children with these
conditions.
Primary Funding Source: Other Govt, National Institute of
Mental Health
„ Interspecialty Differences in the Care of Children
Michelle Mayer, Ph.D., M.P.H., Asheley C. Skinner, B.A., Gary
L. Freed, M.D., M.P.H.
Presented By: Michelle Mayer, Ph.D., M.P.H., Research
Fellow, Sheps Center for Health Services Research, University
of North Carolina at Chapel Hill, CB #7590, Chapel Hill, NC
27599-7590; Tel: 919-966-7666; Fax: 919-966-1634; Email:
michelle_mayer@unc.edu
Research Objective: To determine what is currently known
about interspecialty differences in the care of children with
chronic or serious acute conditions in terms of 1) physician
beliefs, attitudes about and comfort with conditions or
treatment approaches, 2) diagnostic accuracy, 3) consistency
with guidelines, 4) treatment approaches, 5) patient
education, satisfaction, and adherence, 6) outcomes, and 7)
utilization and costs..
Study Design: Using Medline and PubMed, we conducted a
systematic search of the literature published from January 1,
1992 through December 31, 2003. We included research
articles and task force reports and abstracted the following
information: author, year of publication, relevant specialty or
condition, data source, final sample size, response rate, unit
of observation, and type of comparison.
Principal Findings: We identified 49 relevant articles. Data
sources varied, with physician surveys comprising the
majority. Only one-third of studies used statistical methods
beyond descriptive and bivariate statistics. The majority of
included studies involved comparisons between generalists or
pediatric subspecialists and other specialties. Differences in
treatment approaches were the most common outcome of
interest. Interspecialty differences were identified in each of
the seven areas of interest; however, findings were not
consistent enough across studies to allow recommendations
for the structure of the child health care system. Only asthmarelated studies consistently suggest a beneficial effect of
specialty care.
Conclusions: Over the past decade, many studies have
explored interspecialty differences in pediatric care. These
articles cover a multitude of specialties, diseases, and facets of
care and use research and statistical approaches that vary in
their approach and quality. Despite the variations across
these articles, our results demonstrate the existence of
interspecialty differences in all areas that we examined. For
the most part, however, the evidence is neither consistent nor
compelling enough to make recommendations about whom
should deliver care. Furthermore, few studies have made the
leap from comparing specialists in terms of their knowledge,
attitudes, and behaviors or their treatment approaches to
comparing the outcomes of their patients. The extent to
which interspecialty differences influence clinical and
economic outcomes is the fundamentally important question
that remains unanswered.
Implications for Policy, Delivery, or Practice: Based on
existing evidence, it remains unclear how best to structure the
care of children with chronic or serious acute conditions.
More research is need to understand if pediatric subspecialty
care yields better clinical and/or financial outcomes and to
substantiate the existence of volume-outcomes relationships
in pediatric care. Such research is essential to efforts to create
a rationale child health care system.
10
Primary Funding Source: AHRQ,
significantly less likely to report delaying care over the previous
12 months and more likely to need care coordination and to
have heard of Title V. Receipt of Title V services was less likely
among children living in states below the 25th percentile on
the family participation score.
Conclusions: There is evidence of an association between
individual outcomes and state Title V system capacity. Our
findings suggest that state Title V expenditures are associated
with increased likelihood of having a usual source of care and
decreased risk of delaying care receipt. We also find that Title
V spending and state expenditures on CSHCN may enhance
awareness of the need for care coordination services and the
existence of Title V programs. Children living in states with
low scores on family participation are at increased risk for not
receiving Title V services. These findings suggest that children
living in states with greater Title V system capacity may
experience better access to services than those in states with
lower capacity.
Implications for Policy, Delivery, or Practice: Higher state
expenditures on children and CHSCN through Title V appear
to be associated with increased access to care and familiarity
with Title V. Greater state expenditures appear to yield
benefits to CSHCN. Because local variations in health system
capacity within states may limit hierarchical analyses of the
relationship between individual outcomes and state health
system capacity, assessment of the relationship between
individual outcomes and state capacities using of county-level
measures of capacity may enhance future research. In
addition, qualitative analyses of the relationship between state
health system capacity and individual outcomes may enhance
our understanding of how state resources can best be
employed to enhance the health of CSHCN.
Primary Funding Source: Other, Maternal Child Health
Bureau
„ Does State Title V Capacity Relate to Service Utilization
Among CSHCN?
Michelle Mayer, Ph.D., M.P.H., Lewis Margolis, M.D., M.P.H.,
Michelle L. Mayer, Ph.D., M.P.H., Anita Farel, Ph.D., Kathryn
A. Clark, M.P.H.
Presented By: Michelle Mayer, Ph.D., M.P.H., Research
Fellow, Sheps Center for Health Services Research, University
of North Carolina at Chapel Hill, CB #7590, Chapel Hill, NC
27599-7590; Tel: 919-966-7666; Fax: 919-966-1634; Email:
michelle_mayer@unc.edu
Research Objective: The increasing responsibility of state and
local governments in implementing child and family policies
may have important implications for the health and well-being
of children, especially those with special health care needs.
While the Maternal and Children Health Services Block Grant
provides core funding for infrastructure, population-based
services, enabling services and gap-filling for clinical and other
services, the capacity of state MCH systems may vary
considerably across states. Differences in state Title V
capacity may have important implications for service
utilization among vulnerable pediatric populations. Our
objective is to assess the association between state Title V
capacity and service utilization among children with special
health care needs (CSHCN).
Study Design: We used state data from the Title V
Information System and the Maternal Child Health Bureau
and individual level data on health care utilization from the
National Survey of Children with Special Health Care Needs.
We examined the relationship between state capacity
measures and children’s receipt of services, while controlling
for individual level characteristics. Separate regressions were
run for each of the following dependent variables of interest:
receipt of Early Intervention Services, receipt of Special
Educational Services, having usual source of care, having a
personal doctor or nurse, care delayed or foregone in the past
12 months, need for care coordination services, ever heard of
Title V, and receipt of services or equipment through Title V.
State level capacity measures of interest included the match
ratio for Title V spending, per capita state Title V expenditures
using state Under 18 population, percent of state Title V
expenditures spent on CSHCN, and state per child
expenditures on CSHCN; these variables were made into
categorical variables using the 75 percentile as a cutoff point.
In addition, total score on family participation characteristics
was made into a categorical variable using the 25 percentile as
a cutoff point. The statistical models controlled for
unobserved homogeneity across observations from the same
state using random effects regression.
Population Studied: We studied children from the National
Survey of Children with Special Health Care Needs.
Principal Findings: Measures of Title V system capacity were
not associated with receipt of Early Intervention Services or
Special Educational Services. In contrast, state Title V capacity
was associated with access measures. Children residing in
states with per child Title V expenditures above the 75th
percentile were significantly more likely to report a usual
source of care and more likely to have heard of Title V.
Children residing in states above the 75th percentile for the
percent of Title V expenditures devoted to CSHCN were
„ Mental Health of Children Being Raised by
Grandparents
Judith Salzer, Ph.D., M.B.A., R.N., C.P.N.P.
Presented By: Judith Salzer, Ph.D., M.B.A., R.N., C.P.N.P.
Associate Dean for Strategic Management, School of Nursing,
Medical College of Georgia, 502 Granite Point, Martinez, GA
30907; Tel: (706) 855-1507; Fax: ; Email: jsalzer@mail.mcg.edu
Research Objective: The number of children being raised by
grandparents has been increasing rapidly during the past two
decades, primarily as a result of neglect and/or abuse by drug
impaired parents. Although the prevalence of mental health
problems is unknown, children being raised by grandparents
are known to receive fewer services than children in nonrelative foster care. The objective of this pilot study is to
explore the prevalence of mental health problems in children
being raised by grandparents.
Study Design: A convenience sample of 64 children aged 3 to
15 years and their grandparent caregivers completed ageappropriate screening tools for signs and symptoms of mental
health problems including anxiety, depression, and post
traumatic stress disorder. History of previously diagnosed
mental health problems, counseling and hospitalization for
mental health problems was obtained.
Population Studied: Participant families were enrolled in a
Healthy Grandparent Program at an academic health center
school of nursing located in the South. Families were required
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to be residents of a two county area in Georgia and without
children’s parents living in the home. The convenience
sample of children was comprised of approximately equal
numbers of boys (n = 34, 53%) and girls (n = 30, 47%).
Eighty-eight percent of the children were African American and
12% were white.
Principal Findings: Of the children screened, 42% (n = 27)
had a history of a mental health diagnosis with 30% of these
children requiring related hospitalization. The most common
diagnosis was attention deficit hyperactivity disorder (ADHD)
followed by learning disability and depression. Of 40 children
screened for anxiety, 20% showed strong indications of
anxiety and 38% had possible indications of anxiety. Eighteen
percent of adolescents (n = 39) answered positively on the
CAGE questionnaire for drug abuse/alcoholism. Of the 63
children who completed the Center for Epidemiological
Studies Depression Scale for Children (CES-DC), 41% (n = 26)
scored above the cut-point of 15. A questionnaire related to
obsessive compulsive disorder (OCD) was completed by 63
children. Thirty-two percent (n = 20) indicated positive
answers to 50% or more of the symptoms. Forty-one percent
(n = 26) of 63 children answering the PTSD questionnaire
answered “yes” to “having experienced or witnessed a lifethreatening event that caused intense fear, helplessness or
horror” in the past with 32% indicating symptoms of PTSD.
Conclusions: This pilot study supports other reports that
mental health problems may be more prevalent in children
being raised by grandparents than in the general population.
Further study of larger samples is required to clearly
determine the prevalence of mental health problems in
children being raised by grandparents.
Implications for Policy, Delivery, or Practice: Children being
raised by grandparents require routine screening for mental
health problems and appropriate referral for evaluation.
Services at least equal to those received by children in nonrelative foster care are required. Policy should be aimed at
eliminating the disparity in services.
Primary Funding Source: N/A, Johnson & Johnson/Rosalynn
Carter Institute
services for behavioral health services (repeated annual
measures on youth nested within counties). Analysis (2) pools
the ER visits across time and estimates a single multi-level
logistic model (youth within counties) assessing the
probability that youth seen in the ER receive a specialty
outpatient service in the subsequent 30 days.
Population Studied: Seven years of data (1996-2003) were
included, with approximately 350,000 children ages 4-17
enrolled in Medicaid per year. The analysis uses ER visits that
do not result in a hospital admission in order to focus on ER
use as a substitute for usual sources of care.
Principal Findings: Youth in predominantly rural counties
(50% or more rural population) are up to 50% more likely to
use ER services than youth in predominantly urban counties
(less than 25% rural). However, these differences are
mediated by racial and gender differences in the use of ER.
Conclusions: Despite greater concentrations of ER
departments and geographic concentration of enrollees in
urban environments, youth in urban settings exhibited less
reliance upon ER care. This may be due to the fact that urban
counties have more resources available generally, so that not
only are families closer to the ER they are also closer to
substitutes (e.g., primary practitioners, health clinics) or
systems may have more efficient outreach (e.g., transportation
assistance).
Implications for Policy, Delivery, or Practice: Managed
health care models have emphasized the importance of
primary and preventive care in order to reduce the expense of
ER services and have shown progress among both employed
and publicly-funded populations across the country for
physical health services. However, the reliance on ER services
for behavioral health care – and especially in rural areas where
specialty services are not available -- needs specific attention
by researchers, policy makers, service providers, and managed
care administrators.
Primary Funding Source: NIMH,
„ Hypoplastic Left Heart Syndrome among US Military
Dependents
John Scott, M.D., David W. Niebuhr, M.D.
„ Use of Emergency Room Services for Behavioral Health
Problems among
Robert Saunders, M.P.P.
Presented By: Janice Hanson, Ph.D., Ed.S., Assistant
Professor, Medicine, Uniformed Services University of the
Health Sciences, 4301 Jones Bridge Road, Bethesda, MD
20814; Tel: 301-295-9726; Fax: 301-295-2059; Email:
jhanson@usuhs.mil
Research Objective: To examine trends in Military Health
Care System requirements for US military dependents with
Hypoplastic Left Heart Syndrome.
Study Design: This was a retrospective review of
administrative data. Data were obtained from the Patient
Administration Systems and Biostatistics Activity under an
IRB approved protocol. The databases used contain
information from all Army hospital records from January 1980,
all MHS hospital records since 1990, all MHS clinic outpatient
records from October 1999, and all civilian hospital bills to
since October 1999 (fiscal year 2000).
Population Studied: Pediatric beneficiaries of the US Military
Health Care System receiving care between January 1980 and
August 2005.
Principal Findings: The analysis identified 366 patients with
7897 records (656 MTF inpatient, 6582 MTF outpatient, and
Presented By: Robert Saunders, M.P.P., Research Associate,
Human & Organizational Development, Vanderbilt University,
230 Appleton Place, Box 90 Peabody College, Nashville, TN
37203; Tel: 615-322-8284; Fax: 615-322-1141; Email:
robert.c.saunders@vanderbilt.edu
Research Objective: (1) To examine variability in the use of
emergency room (ER) services for behavioral health problems
in Medicaid as a function of urban and rural residence,
controlling for demographic characteristics and enrollment
category. (2) To examine whether youth who seek ER care are
more likely to receive a subsequent specialty mental health
service.
Study Design: Uses pooled time series analysis of individual
data from the TennCare claims/encounter and enrollment
data files for the time period FY1996-FY2003, the initial eight
years of managed behavioral health for the Tennessee
Medicaid population. Analysis (1) estimates a multi-level
logistic regression model of the annual probability of using ER
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659 purchased care). There were 230 males and 136 females, a
ratio of 1.7 to 1. There were 63 patients with birth dates in the
1980s, 155 in the 1990s, and 148 born after 2000. There were
71 patients with hospital bill records only (i.e. no direct care).
Among the 295 patients with direct care records, 187 were
born in a military hospital (152 since 1989, when data from all
services were available). Direct care patients averaged 14.9
(range 11-23) per birth year from 1989 to 2004. The rate of
intervention among these patients showed a marked increase
from 51% (54/105) in the 1990s to 94% (44/47) since 2000
(p<.001). Survival curves showed an anticipated marked
increase from the 1980s to the 1990s, but there was no
significant difference between the 1990s and 2000s. Survival
since 2000 for patients who underwent intervention was 66%
at 21 months, (CI 56-75%). Incidence, estimated by proportion
of patients born in an MHS facility with HLHS, was 1.4 per
10,000. The rate in Asians was lower (0.4) but the difference
NS. There was no significant trend in incidence over time.
Prevalence, estimated by the proportion of all children
admitted to an MHS hospital with HLHS, increased from 0.4
per 10,000 in 1989 to 3.2 in 2005, with a linear increase
(r2=0.92). The proportion of outpatient encounters showed a
similar increase, from 0.4 to 0.8 per 10,000 from 2000 to
2005 (r2=0.98). A total of $75M has been billed to the MHS
for inpatient admissions among these patients since 2000,
increasing from $9.5M in 2000 to 17.3M in 2004. The average
total billed per patient born between 2000 and 2004 and
having surgical intervention was $504K as of August 2005,
with mean age at last record of 22 months. The average bill for
stage 1 surgery was $289K.
Conclusions: Almost all military dependents with HLHS are
being referred for intervention. Incidence has remained
unchanged but prevalence in the patient population is
increasing. Costs from civilian bills are also increasing. These
trends can be expected to continue. HLHS has a significant
and increasing impact on the MHS.
Implications for Policy, Delivery, or Practice: Given the
nature of this severe defect, the finding that nearly all patients
currently undergo intervention indicates that decision making
may be biased. The increasing prevalence (due to increasing
survival) forecasts a continuing increase in costs that can be
expected to accelerate due to morbidities that manifest in the
second decade.
Primary Funding Source: Other Govt, WRAIR operating
budget
Study Design: Surveys containing previously developed and
tested instruments to measure emotional wellness were
completed at baseline by parents enrolled in a randomized
controlled trial to evaluate a parent education program.
Baseline characteristics of both the parents and children were
compared to those of chronically ill adults and parents and
children with chronic conditions participating in previous
national surveys.
Population Studied: Parents of children with chronic health
conditions ages 2 to 11 who responded to recruitment
activities in the Seattle-Tacoma-Everett, Washington
metropolitan area.
Principal Findings: Comparing baseline characteristics with
data from the National Survey of Children with Special Health
Care Needs 2001 (NS-CSHCN) for Washington state, parents
who enrolled in the Building on Family Strengths (BFS)
education program, on average, had more years of schooling
and households contained fewer adults. The chronically ill
children in the BFS sample were rated as having more severe
conditions that were less stable and affected the child’s
abilities to do things more often and to a greater extent than
those in the NS-CSHCN Washington sample. Over half of the
BFS parents were identified as having depressive symptoms
by the Center for Epidemiologic Studies Short Depression
Scale (CES-D10). On scales designed to measure Health
Distress and Social/Role Activities Limitations, BFS parents
scored higher than chronically ill adults (i.e., more distressed
over health issues that constrained their activities compared
to adults who were themselves chronically ill).
Additional baseline surveys will be available prior to the
meeting and should provide sufficient sample size to evaluate
these parent measures with respect to their child’s type of
chronic condition (physical, behavioral/emotional,
developmental), age, parent-rated chronic condition severity
and stability.
Conclusions: Parents of children with chronic illness bear not
only the burdens associated with caring for their children, but
also significant social and psychological stressors.
Implications for Policy, Delivery, or Practice: Practitioners
need to be cognizant to screen for these parental concerns
when caring for children with chronic illness. Programs
designed to help parents cope with such impacts while caring
for their chronically ill children and other family members are
greatly needed.
Primary Funding Source: AHRQ,
„ Measuring Impacts on Parents of Managing Childhood
Chronic Illness
Virginia Sharp, M.A.
„ A Pilot Trial of a FAX-Back Form to Improve
Communication from Referring to Consulting Physicians
Christopher Stille, M.D., M.P.H., Vanessa Meterko, B.S.,
Richard C Wasserman, M.D., M.P.H.
Presented By: Virginia Sharp, M.A., Senior Research
Associate, Center for Children with Special Needs, Children's
Hospital & Regional Medical Center, 1100 Olive Way, Suite
500, MPW5-2, Seattle, WA 98101; Tel: (206) 987-5311; Fax:
(206) 987-5741; Email: ginny.sharp@seattlechildrens.org
Research Objective: Describe and evaluate selected
demographic and emotional characteristics of parents of and
their children who have chronic illness. Parents self-selected to
participate in a 7-week parent education program on
managing pediatric chronic illness called Building on Family
Strengths.
Presented By: Christopher Stille, M.D., M.P.H., Assistant
Professor, Pediatrics, University of Massachusetts, Benedict
A3-125, 55 Lake Avenue North, Worcester, MA 01655; Tel: (508)
856-5672; Fax: (508) 856-1042; Email: stillec@ummhc.org
Research Objective: Determine whether a pilot office-based
intervention consisting of provider education and a structured
FAX-back communication form can increase communication
between referring primary care providers (PCPs) and
consulting specialists (SPs) at the time of specialty
consultation.
13
Study Design: Pilot intervention trial with before-after
evaluation design.
Population Studied: We studied communication between
PCPs and SPs about the care of 59 children referred from
community pediatric primary care practices to outpatient
pediatric medical specialties at an academic medical center
after the intervention was implemented, as measured by chart
review. We compared this to communication for 179 children
studied prior to the intervention.
Principal Findings: Of 58 SP charts reviewed, any
communication from the PCP was present in 30 (52%) and, of
those, the form was present in 18 (60%). Of 56 PCP charts
reviewed, communication from the SP was present in 48
(86%) and, of those, the form was present in 4 (8%).
Compared with the pre-intervention cohort, we found a slight
increase in rates of PCP to SP communication (52%, vs. 36%
in the comparison group, p=.04) but no significant increase in
SP to PCP communication (86% vs. 79%, p=.26).
Conclusions: An office-based intervention including a FAXback form resulted in the form's use in the majority of referral
communication from PCPs to SPs, but only modestly
increased documented PCP to SP communication overall,
with very little use in communication from SP back to PCP.
Implications for Policy, Delivery, or Practice: While
structured forms may be part of the solution to increase
communication between PCPs and specialists about referrals,
successful strategies will likely require system solutions that
include more than physician-dependent communication
protocols.
Primary Funding Source: RWJF,
calculated descriptive statistics and univariate associations
using SPSS.
Population Studied: Data was retrieved on 425 incarcerated
youths: 88.4 percent males, 72 percent African-American
males; mean age of entire population was 16.1 years old.
Principal Findings: No youths were underweight.
Approximately 25 percent of the youths were above the 85th
percentile of BMI for age and gender: 49 percent of the
females, 22 percent of the males were above normal weight.
Of the males 15 percent were at-risk and 7 percent were
overweight (national averages 33 percent and 19 percent,
respectively).
Conclusions: The African-American male population at this
institution had significantly lower BMI than comparable
groups. However, other gender and ethnicity subgroups at
this institution reflect the obesity prevalence of the national
adolescent population. Since nearly half of the females do
have BMI values of concern, weight control initiatives
implemented at these facilities should be available on an
individual basis, emphasizing healthy eating. The many
growing adolescents who have acceptable BMI values may
require additional daily calories in order to reach their
maximum growth potential. Thus, incarcerated youths would
benefit from individual health plans (primary or secondary
prevention programs) during their period of incarceration.
Implications for Policy, Delivery, or Practice: During their
period of incarceration, youth participate in a very strict
schedule of activities. Breakfast and lunch are provided
through the Federal School Lunch Program. At this facility the
daily caloric intake was calculated to be between 3500-4000
calories, with approximately 40 percent provided through fat
consumption. Incarceration often leads to restricted caloric
intake and a sedentary lifestyle, even among those who were
active prior to incarceration, suggesting the need for closer
attention to caloric intake and related activity level among
growing and developing youth.
Primary Funding Source: No Funding,
„ Incarcerated Juveniles and Obesdity: A Relationship?
Debra Tennyson, Ph.D., M.B.A., Ronald Feinstein, M.D.,
Ricardo Gomez, M.D.
Presented By: Debra Tennyson, Ph.D., M.B.A., Associate
Professor, Health Service Administration, Our Lady of the
Lake College, 7443 Picardy Avenue, Baton Rouge, LA 70808;
Tel: 225-214-6969; Fax: 225-768-0819; Email:
dtennyso@ololcollege.edu
Research Objective: Approximately 130,000 youths are held
in juvenile residential facilities, in which food access and
physical activities are strictly controlled. The purpose of this
project is to establish the percentage of adolescents who are
overweight, or at risk for overweight, upon entering a longterm juvenile correctional care facility, and thus to determine
whether there is a need for a weight management program in
the facility.
Study Design: Retrospective study of initial intake evaluations
on all youth entering a long-term juvenile correctional facility
in Southeastern United States over a seven-month period,
beginning December 1, 2003 and ending June 30, 2004.
Gender, race and age demographics, in addition to height and
weight, were collected, from which Body Mass Index (BMI)
was calculated. The definitions of overweight (> 95th
percentile for age) and at risk (85th to 95th percentile for age)
were based on the 2000 Centers Disease Control and
Prevention growth charts for the United States. Approval for
this study was granted by the appropriate Institutional Review
Board. Data analysis involved calculation of descriptive
statistics for Body Mass Index stratified on the demographic
variables. Data was entered using double verification and
„ Outcomes for Near Term Newborns in Utah
Paul Young, M.D., Paul Young, M.D., Tiffany Glasgow, M.D.,
Ginger Guest-Warnoch, M.P.H., Xi Li, M.stat.
Presented By: Paul Young, M.D., Professor of Pediatrics,
Pediatrics, University of Utah, 50 North Medical Drive, Salt
Lake Ctiy, UT 84132; Tel: 801-581-3322; Fax: 801-581 3893;
Email: paul.young@hsc.utah.edu
Research Objective: Compare risk of death and causes of
death for near term newborns to those born full term.
Study Design: Secondary analysis of linked birth and death
certificate data. Odds ratios of death during the first week, first
month and first year for each weekly gestational age cohort
with 40 weeks as referent. Analysis of causes of death for each
time period and each gestational age cohort.
Population Studied: All newborn infants with an EGA of 3442 weeks born in Utah between 1999 and 2004.
Principal Findings: The odds ratios for death in each period
is significantly higher for each weekly cohort relative to 40
weeks EGA. Odds ratios for death in the first week of life are:
34=24.3;35=15.3;36=9.6;37=2.7. The 95% confidence intervals
indicate that these are all statistically significant. Similar
findings were found for the first month and first year.
Congenital anomalies account for the majority of deaths in NT
14
infants in all three intervals. The majority of these die in the
first day or two of life. For newborns who survive the first 48
hours, the differences in outcome of NT and FT infants is still
significant but the odds ratios are much smaller.
Conclusions: Near term newborns are at greater risk of dying
at all time intervals compared with those born full term. Most
die of congenital anomalies. Near term newborns who do not
have a congenital anomaly and survive the first two days of life
have outcomes that are similar but still worse than those born
full term.
Implications for Policy, Delivery, or Practice: Efforts to
reduce the prevalence of congenital anomalies should
continue to have high priority. The managment of near term
newborns in the nursery and after discharge should take into
consideration their higher risk
Primary Funding Source: AHRQ,
15