Epilepsy Research and Treatment / 2013 / Article / Tab 2

Research Article

Assessing Systems of Care for US Children with Epilepsy/Seizure Disorder

Table 2

Percentage of children with special health care needs (CSHCN) with and without parent-reported current epilepsy/seizure disorder meeting the criteria for six quality indicators and their subcomponents: National Survey of Children with Special Health Care Needs, USA, 2009-2010.

Quality indicators and their componentsValid CSHCN with current epilepsy/seizure disorderCSHCN without current epilepsy/seizure disorder
% (SE)% (SE)P

Indicator 1: shared decision-makinga
Child’s doctors discussed range of health care/treatment options4007684.4 (1.71)81.6 (0.38)0.1231
Child’s doctors encourage parents to ask questions or raise concerns4002678.8 (3.50)81.5 (0.38)0.4553
Child’s doctors make it easy for parents to ask questions or raise concerns4007081.6 (3.58)86.3 (0.35)0.2098
Child’s doctors respect parent's treatment choices3999281.6 (3.56)84.5 (0.36)0.4261
Indicator 1 met3985868.9 (3.36)70.3 (0.44)0.6687

Indicator 2: medical homeb
Child has usual source for sick and well care4008287.8 (1.50)89.4 (0.30)0.1918
 Child has usual source for sick care4014688.7 (1.46)90.6 (0.29)0.7335
 Child has usual source for well care4014996.4 (0.83)96.7 (0.17)0.2849
Child has personal doctor or nurse4016896.6 (0.76)93.0 (0.25)0.0000
Child has no problems obtaining referrals, when needed1326575.5 (2.86)76.7 (0.74)0.6871
Child receives family-centered care3966759.2 (3.21)64.8 (0.46)0.0003
 Child’s doctors spend enough time with him/her 4001476.6 (3.51)77.6 (0.41)0.0114
 Child’s doctors listen carefully to his/her parent(s)4005584.6 (3.59)87.8 (0.33)0.1278
 Child’s doctors are sensitive to family customs and values3992789.2 (1.52)88.9 (0.33)0.6456
 Child’s doctors provided information specific to child's health4004073.5 (3.51)82.7 (0.37)0.0998
 Child’s doctors help family feel like partners in care4006382.3 (3.62)87.1 (0.34)0.7786
Child receives effective care coordination2983144.4 (2.95)56.4 (0.54)0.3993
 Family usually/always receives sufficient help coordinating child's health care1289055.9 (4.39)57.9 (0.83)0.8207
 Family is very satisfied with communication among child's doctors2640154.1 (3.25)63.1 (0.55)0.0172
 Family is very satisfied with doctors’ communication to school or programs 1151548.2 (3.25)53.3 (0.88)0.2066
Indicator 2 met3893431.9 (2.52)43.3 (0.46)0.0001

Indicator 3: consistent and adequate health insurancec
Child had public or private insurance at the time of the interview4016699.1 (0.34)96.4 (0.20)0.0000
Child had no gaps in coverage during past 12 months4008788.6 (3.67)90.8 (0.29)0.5552
Child has adequate insurance3861261.3 (3.24)65.8 (0.45)0.1835
 Insurance usually/always meets the child’s needs3886582.1 (3.59)87.0 (0.34)0.1964
 Costs not covered by insurance are usually or always reasonable3873464.8 (3.29)71.5 (0.42)0.0570
 Insurance usually or always permits child to see needed providers3889586.7 (3.66)89.6 (0.31)0.4338
Indicator 3 met3969957.9 (3.15)60.6 (0.46)0.3939

Indicator 4: early and continuous screeningd
Child has received routine preventive medical care in past year3997291.5 (1.30)90.3 (0.27)0.4018
Child has received routine preventive dental care in past year3958582.8 (1.95)86.0 (0.34)0.0990
Indicator 4 met3985977.4 (2.15)78.6 (0.39)0.5709

Indicator 5: community-based servicese
Child has no difficulties or delays getting services3999851.0 (3.00)66.6 (0.45)0.0000
 Child has no difficulties or delays due to eligibility4013379.7 (3.55)89.5 (0.32)0.0119
 Child has no difficulties or delays due to availability4014476.5 (3.53)89.2 (0.31)0.0015
 Child has no difficulties or delays due to problems getting appointments4018469.8 (3.39)82.6 (0.37)0.0008
 Child has no difficulties or delays due to cost4019575.3 (3.48)85.4 (0.34)0.0089
 Child has no difficulties or delays due to trouble getting needed information4019184.2 (1.81)91.2 (0.29)0.0001
 Child has no difficulties or delays for any other reason2817097.2 (0.78)97.0 (0.21)0.7889
Family is never or only sometimes frustrated when trying to get services4019478.2 (3.55)90.6 (0.30)0.0020
Indicator 5 met3997249.6 (2.97)65.6 (0.45)0.0000

Indicator 6: transition to adulthoodf
Youth receives anticipatory guidance in the transition to adulthood1366339.6 (4.16)36.7 (0.75)0.4898
 Doctors have discussed shift to adult provider, if necessary460157.4 (6.22)43.3 (1.38)0.0558
 Doctors have discussed future health care needs, if necessary1235460.5 (4.30)59.0 (0.85)0.7273
 Doctors have discussed future insurance needs, if necessary1040938.8 (4.33)35.0 (0.88)0.3819
Youth has usually or always been encouraged to take responsibility for health care needs1704159.3 (3.69)78.6 (0.60)0.0000
Indicator 6 met1621431.8 (3.79)40.3 (0.70)0.0280

Note: for each indicator Bonferroni corrections are applied to determine significance. Findings determined to be significant at the corrected P value are bolded; SE: standard error; CSHCN: children with special health care needs.
Families of CSHCN are partners in shared decision-making for the child's optimal health.
CSHCN receive coordinated, ongoing, comprehensive care within a medical home.
CSHCN have consistent and adequate private and/or public insurance to pay for the services they need.
CSHCN are screened early and continuously for special health care needs.
CSHCN can easily access community-based services.
fYouth with special health care needs receive the services necessary to make appropriate transitions to adult health care, work, and independence.

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