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 components	Valid 𝑁	CSHCN with current epilepsy/seizure disorder	CSHCN without current epilepsy/seizure disorder
		% (SE)	% (SE)	P
Indicator 1: shared decision-making^a
Child’s doctors discussed range of health care/treatment options	40076	84.4 (1.71)	81.6 (0.38)	0.1231
Child’s doctors encourage parents to ask questions or raise concerns	40026	78.8 (3.50)	81.5 (0.38)	0.4553
Child’s doctors make it easy for parents to ask questions or raise concerns	40070	81.6 (3.58)	86.3 (0.35)	0.2098
Child’s doctors respect parent's treatment choices	39992	81.6 (3.56)	84.5 (0.36)	0.4261
Indicator 1 met	39858	68.9 (3.36)	70.3 (0.44)	0.6687
Indicator 2: medical home^b
Child has usual source for sick and well care	40082	87.8 (1.50)	89.4 (0.30)	0.1918
Child has usual source for sick care	40146	88.7 (1.46)	90.6 (0.29)	0.7335
Child has usual source for well care	40149	96.4 (0.83)	96.7 (0.17)	0.2849
Child has personal doctor or nurse	40168	96.6 (0.76)	93.0 (0.25)	0.0000
Child has no problems obtaining referrals, when needed	13265	75.5 (2.86)	76.7 (0.74)	0.6871
Child receives family-centered care	39667	59.2 (3.21)	64.8 (0.46)	0.0003
Child’s doctors spend enough time with him/her	40014	76.6 (3.51)	77.6 (0.41)	0.0114
Child’s doctors listen carefully to his/her parent(s)	40055	84.6 (3.59)	87.8 (0.33)	0.1278
Child’s doctors are sensitive to family customs and values	39927	89.2 (1.52)	88.9 (0.33)	0.6456
Child’s doctors provided information specific to child's health	40040	73.5 (3.51)	82.7 (0.37)	0.0998
Child’s doctors help family feel like partners in care	40063	82.3 (3.62)	87.1 (0.34)	0.7786
Child receives effective care coordination	29831	44.4 (2.95)	56.4 (0.54)	0.3993
Family usually/always receives sufficient help coordinating child's health care	12890	55.9 (4.39)	57.9 (0.83)	0.8207
Family is very satisfied with communication among child's doctors	26401	54.1 (3.25)	63.1 (0.55)	0.0172
Family is very satisfied with doctors’ communication to school or programs	11515	48.2 (3.25)	53.3 (0.88)	0.2066
Indicator 2 met	38934	31.9 (2.52)	43.3 (0.46)	0.0001
Indicator 3: consistent and adequate health insurance^c
Child had public or private insurance at the time of the interview	40166	99.1 (0.34)	96.4 (0.20)	0.0000
Child had no gaps in coverage during past 12 months	40087	88.6 (3.67)	90.8 (0.29)	0.5552
Child has adequate insurance	38612	61.3 (3.24)	65.8 (0.45)	0.1835
Insurance usually/always meets the child’s needs	38865	82.1 (3.59)	87.0 (0.34)	0.1964
Costs not covered by insurance are usually or always reasonable	38734	64.8 (3.29)	71.5 (0.42)	0.0570
Insurance usually or always permits child to see needed providers	38895	86.7 (3.66)	89.6 (0.31)	0.4338
Indicator 3 met	39699	57.9 (3.15)	60.6 (0.46)	0.3939
Indicator 4: early and continuous screening^d
Child has received routine preventive medical care in past year	39972	91.5 (1.30)	90.3 (0.27)	0.4018
Child has received routine preventive dental care in past year	39585	82.8 (1.95)	86.0 (0.34)	0.0990
Indicator 4 met	39859	77.4 (2.15)	78.6 (0.39)	0.5709
Indicator 5: community-based services^e
Child has no difficulties or delays getting services	39998	51.0 (3.00)	66.6 (0.45)	0.0000
Child has no difficulties or delays due to eligibility	40133	79.7 (3.55)	89.5 (0.32)	0.0119
Child has no difficulties or delays due to availability	40144	76.5 (3.53)	89.2 (0.31)	0.0015
Child has no difficulties or delays due to problems getting appointments	40184	69.8 (3.39)	82.6 (0.37)	0.0008
Child has no difficulties or delays due to cost	40195	75.3 (3.48)	85.4 (0.34)	0.0089
Child has no difficulties or delays due to trouble getting needed information	40191	84.2 (1.81)	91.2 (0.29)	0.0001
Child has no difficulties or delays for any other reason	28170	97.2 (0.78)	97.0 (0.21)	0.7889
Family is never or only sometimes frustrated when trying to get services	40194	78.2 (3.55)	90.6 (0.30)	0.0020
Indicator 5 met	39972	49.6 (2.97)	65.6 (0.45)	0.0000
Indicator 6: transition to adulthood^f
Youth receives anticipatory guidance in the transition to adulthood	13663	39.6 (4.16)	36.7 (0.75)	0.4898
Doctors have discussed shift to adult provider, if necessary	4601	57.4 (6.22)	43.3 (1.38)	0.0558
Doctors have discussed future health care needs, if necessary	12354	60.5 (4.30)	59.0 (0.85)	0.7273
Doctors have discussed future insurance needs, if necessary	10409	38.8 (4.33)	35.0 (0.88)	0.3819
Youth has usually or always been encouraged to take responsibility for health care needs	17041	59.3 (3.69)	78.6 (0.60)	0.0000
Indicator 6 met	16214	31.8 (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.
aFamilies of CSHCN are partners in shared decision-making for the child's optimal health.
bCSHCN receive coordinated, ongoing, comprehensive care within a medical home.
cCSHCN have consistent and adequate private and/or public insurance to pay for the services they need.
dCSHCN are screened early and continuously for special health care needs.
eCSHCN 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.