This study examined the association between systems of care and activity limitations in children with special health care needs using a national health survey dataset. The study found that children who met criteria for access to family-centered care, comprehensive and coordinated care, and overall quality systems of care were less likely to experience moderate or severe activity limitations compared to children who did not meet these criteria, after controlling for covariates. Key factors associated with fewer activity limitations included meeting criteria for family-centered care, comprehensive and coordinated care, and quality systems of care. The study supports that improved access to supportive, collaborative, and coordinated care can help reduce activity limitations for children with special health care needs.

1. OCCUPATIONAL THERAPY PROGRAM, DEPARTMENT OF KINESIOLOGY, UNIVERSITY OF WISCONSIN-MADISON
The Relationship Between Systems of Care and Activity
Limitations in Children With Special Health Care Needs
Vanessa
Patkowski,
OTS
&
Ruth
E.
Benedict,
DrPH,
OTR
Acknowledgments
References
Results Conclusions
Research Design & Methods
Implications for Practice
Introduction
Background:
• Children with special health care needs (CSHCN) have been found to
have higher daily activity limitation rates than their peers3
• Access to quality family-centered and comprehensive, coordinated
services is associated with positive outcomes for CSHCN including
their participation in daily activities3,4
• Through the priorities of the American Academy of Pediatrics and
the Maternal and Child Health Bureau, the U.S. health care system is
committed to providing quality health care for all children, including
those with special needs1
Purpose:
To determine if there is an association between meeting criteria for access
to a quality system of care (SOC), and the degree of activity limitations
experienced by CSHCN
Hypotheses:
• CSHCN who met all the criteria for SOC will be less likely to have
their daily activities affected by their health conditions
• CSHCN who met all the criteria for FCC will be less likely to have
their daily activities affected by their health conditions
• CSHCN who met all the criteria for CCC will be less likely to have
their daily activities affected by their health conditions
Design:
• A cross-sectional, population-based analysis using data from a national
health survey
Participants:
• Data obtained from the 2009-2010 National Survey of Children with
Special Health Care Needs (NSCSHCN)
• CSHCN reported to have one or more functional difficulty
• N = 36,352 , ages 0-17
Independent Variables:
• Systems of Care (SOC): medical care provided that addresses family-
centeredness, comprehensive & coordinated care (CCC), adequate
health insurance, early and continuous screenings, and necessary
transition services from youth to adulthood5
• Family-centered care (FCC): collaborative and supportive
relationship between health professionals and families of CSHCN4
• Comprehensive, coordinated care (CCC): provides appropriate
health care and community referrals, connections with support groups,
and coordinates plans of care with educational and community
organizations to ensure individualized needs of CSHCN are addressed1
Dependent Variable:
• Activity Limitations: CSHCN whose health conditions consistently
affect daily activities: Daily activities never affected vs. Daily
activities moderately affected vs. Daily activities consistently affected
Covariates:
• Age, gender, race, poverty level, & household education level
Analyses:
• Unadjusted chi square analyses were conducted to examine the
association between the independent and dependent variables
• Multinomial logistic regression analyses were performed to control for
covariates and account for complexity of survey design
In unadjusted analyses, significant associations were found between all three independent
variables (SOC, FCC, & CC) and activity limitations
After controlling for covariates in a multinomial logistic regression model, the associations
between the independent variables and activity limitations remained significant: Children
meeting the criteria for 1) FCC, 2) CCC, & 3) quality SOC were less likely to have
moderate or severe activity limitations than children not meeting criteria
Significant Predictors for Activity Limitations:
• SOC/FCC/CCC: For all three models, the risk of experiencing activity limitations is decreased
among children meeting the SOC, FCC, and CCC criteria relative to those who do not meet
the criteria
• Age: Children 5-10 years of age were more likely to report limitations that moderately or
consistently affected daily activities than children 0-4 years of age across all three models. For the
FCC model, children in the 11-17 age group were also more likely than those in the 0-4 years
group to report moderate activity limitations
• Gender: Boys were less likely to report limitations that consistently affected daily activities than
girls across the three models
• Race: Black children were less likely to be reported as having limitations that consistently
affected daily activities than white children in the SOC & FCC models
• Socioeconomic status: Children living in families with income above 100% the federal poverty
level were less likely to have limitations that moderately or consistently affected daily activities
than children in families at or below the poverty level across all three models
Thank you to my research mentor, Dr. Benedict, on her time,
patience, and guidance throughout this process. Also, thank you
to Dr. Travers for her constant support, advice, and
encouragement. Finally, thank you to my family and my
classmates, particularly those in my research group, who also
provided me with their immense support.
• The primary hypothesis was supported for the unadjusted analysis
and after controlling for multiple covariates: There was a
significant relationship between CSHCN who received SOC and
their degree of reported activity limitations
• Both secondary hypotheses were supported for the unadjusted
analyses and after controlling for multiple covariates: There was a
significant relationship between CSHCN who received FCC and
CCC and their reported activity limitations
v This supports previous literature that found FCC to be
associated with decreased activity limitations 3
v This supports previous literature that found outcomes of
CCC (i.e. less caregiver stress & financial demands) to be
associated with decreased activity limitations2,3
• Covariates that appeared to be predictive of participants who
reported no activity limitations were linked to age, gender, race,
and socioeconomic status
Occupational therapists are:
• Highly skilled in providing holistic and family-centered care
• Trained to analyze and assess factors that affect activity limitations
Therefore, occupational therapists should:
• Advocate more for being a part of a multidisciplinary team of
health professionals that deliver SOC services to CSHCN
• Continue to provide care that is collaborative, supportive, and
considerate of the unique needs, wants, and culture of each family
• Contribute to CCC by providing families with information on
support groups and community resources while assisting them in
understanding any complex health issues and how they may affect
activity limitations
Independent
Variable
No
Ac2vity
Limita2ons
Moderate
Ac2vity
Limita2ons
Consistent
Ac2vity
Limita2ons
P-­‐value
Systems
of
Care:
<.001
Criteria
MET
27.4%
17.3%
9.5%
Criteria
NOT
Met
72.6%
82.7%
90.5%
Family-­‐Centered
Care:
<.001
Criteria
MET
75.8%
65.9%
57.2%
Criteria
NOT
Met
24.2%
34.1%
42.8%
Comprehensive,
Coordinated
Care:
<.001
Criteria
MET
70.9%
57.7%
42.3%
Criteria
NOT
Met
29.1%
42.3%
57.7%
Moderate
Ac2vity
Limita2ons
Consistent
Ac2vity
Limita2ons
Independent
Variable
Rela2ve
Risk
Ra2o
P-­‐value
Rela2ve
Risk
Ra2o
P-­‐value
Systems
of
Care
(Criteria
MET)
0.56
<.001
0.31
<.001
Family-­‐Centered
Care
(Criteria
MET)
0.75
<.001
0.51
<.001
Comprehensive,
Coordinated
Care
(Criteria
MET)
0.58
<.001
0.32
<.001
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http://doi.org/10.1542/peds.2009-1255B