Matern Child Health J DOI 10.1007/s10995-014-1454-7
Chronic Conditions, Functional Difficulties, and Disease Burden Among American Indian/Alaska Native Children with Special Health Care Needs, 2009–2010 Mary Kay Kenney • Judy Thierry
Springer Science+Business Media New York (outside the USA) 2014
Abstract The purpose of this study was to determine the prevalence of chronic conditions and functional difficulties of American Indian/Alaska Native (AIAN) children with special health care needs (CSHCN). We conducted bivariate and multivariable analysis of cross-sectional data on 40,202 children from the 2009–2010 National Survey of Children with Special Health Care Needs aged birth through 17 years, including 1,051 AIAN CSHCN. The prevalence of AIAN CSHCN was 15.7 %, not significantly different from the prevalence of US white CSHCN (16.3 %). As qualifiers for special needs status among AIAN children the use of or need for prescription medication was the most frequent (70 %), compared to the lower rates of need for elevated service use (44 %) and emotional, mental, or behavioral treatment/counseling (36 %). Asthma (45 %), conduct disorder (18 %), developmental delay (27 %), and migraine headaches (16 %) were significantly more common chronic conditions among AIAN CSHCN compared to white CSHCN, as were functional difficulties with respiration (52 %), communication (42 %), anxiety/depression (57 %), and behavior (54 %). AIAN CSHCN were also more likely to have 3 or more chronic conditions (39 vs. 28 %, respectively) and 3 or more functional difficulties (70 vs. 55 %, respectively) than white CSHCN. Results indicated a greater impact on
The views expressed are the authors’ and not necessarily those of the Health Resources and Services Administration or the US Department of Health and Human Services. M. K. Kenney (&) J. Thierry US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, 5600 Fishers Lane, Room 18-41, Rockville, MD 20857, USA e-mail: [email protected]
the daily activities of AIAN CSHCN compared to white CSHCN (74 vs. 63 %). Significantly greater disease burden among AIAN CSHCN suggests that care must be taken to ensure an appropriate level of coordinated care in a medical home to ameliorate the severity and complexity of their conditions. Keywords American Indian and Alaska Native Children with special health care needs Chronic conditions Functional difficulties Racial disparities
Introduction Significant progress has been made in maternal and child health (MCH) during the last decades. According to a recent review of progress for Healthy People (HP) 2010, two-thirds of the MCH objectives with available data had moved toward or achieved the HP 2010 targets [1]. In spite of such commendable progress nationally, racial disparities of 100 % or more have been noted, particularly affecting black and American Indian/Alaska Native (AIAN) mothers and children. Noteworthy factors included: elevated and increasing rates of very low birth weight, less than optimal prenatal care and maternal high risk behaviors, including high rates of maternal smoking. Analysis of risk factors for poor birth outcomes in Urban Indian Health Organization (UIHO) service areas indicated significant disparities between AIANs and the general population in teen birth rates, receipt of prenatal care, and smoking/alcohol consumption during pregnancy [2]. Such patterns in MCH would suggest that relatively high rates of special health care needs might be likely among AIAN children. AIAN children with disabilities were reportedly somewhat more likely to receive Individuals
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with Disabilities Education Act (IDEA) Part C Early Intervention services (birth to 3 years of age) than children of other racial/ethnic groups (risk ratio = 1.1) [3]. In addition, AIAN students also had the highest risk ratio (i.e., 1.5) for being served under IDEA Part B preschool programs (ages 3–5 years) compared to other racial/ethnic groups. Specific learning disabilities (53.3 %), speech/ language impairment (16.3 %), emotional disturbance (8.0 %), mental retardation (7.4 %) and other health impairments (7.4 %) were the 5 largest disability categories for AIAN children 6–21 years of age receiving special education and related services under Part B in that same time period (2007). Although significant numbers of AIAN children seem to be affected by disabilities, no comprehensive and nationally representative data describing the nature of disabilities among children in AIAN communities are available [4]. Such data would enable a better understanding of AIAN disabilities, possibly allowing preliminary identification of associated factors on which to base preventive measures and intervention practices within AIAN communities. The use of a large scale quantitative dataset with a nationally representative sample of AIAN children such as the National Survey of Children with Special Health Care Needs (NS-CSHCN) has the potential of producing more useful information than is currently available. This study’s objective is to determine the prevalence of AIAN children with special health care needs (CSHCN) in the US child population, among the population of CSHCN, and among the population of AIAN children. In addition, we will describe the criteria qualifying AIAN children as having special health care needs. Also included are prevalence rates for parent-reported chronic conditions and functional difficulties and measures of the level of impact of the special needs conditions on AIAN CSHCN compared to a reference group of white CSHCN. These data will provide a profile of parent-reported chronic conditions and functional difficulties of AIAN CSHCN as a step toward characterizing the special health care needs of this population.
Methods Data Source The NS-CSHCN is a quadrennial random-digit-dialing survey that was designed to produce national and statespecific prevalence estimates of CSHCN, describe the types of services they need and use, and provide information regarding the system of services available to them [5, 6]. As a combined effort of the National Center for Health Statistics (NCHS) and the Maternal and Child Health
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Bureau (MCHB), the survey uses the Bureau’s conceptualization of CSHCN, operationally defining a special health care need as a medical, behavioral or other condition that has lasted, or would be expected to last, at least 1 year and resulted in at least one of the following: using or needing more medical care, mental health services, or educational services than are generally required by other children of the same age; using or needing prescription medicines; having limitations in the ability to do things other children of the same age do; using or needing special therapy (i.e., physical, occupational, or speech therapy) or assistive devices; or using or needing emotional, developmental, or behavioral treatment or counseling [7, 8]. The 2009–2010 NSCSHCN included a main sample of 40 242 CSHCN. Details of the survey methodology are presented elsewhere [5, 6]. No oversampling of minority populations was conducted. The NCHS Research Ethics Review Board approved all data collection procedures for the survey. Socio-demographic Variables Socio- demographic characteristics (Table 1) included in the analysis were: age (0–2, 3–5, 6–17 years) and gender (male/female), household poverty status (\100, 100–199, 200–399, and 400? % Federal Poverty Level), highest level of education in the household (\high school, high school, [ high school), urbanicity (large metro, medium/ small metro, urban non-metro, urban small town, and rural); and region of the country derived from the Indian Health Service Administrative Areas (Alaskan, Eastern, Northern Plains, Pacific Coast, Southwestern) [9]. The urbanicity measure is based on Rural–Urban Commuting Area (RUCA) codes which use Census Bureau and work commuting information to differentiate geographic classification based on city/town size and functional relationships to larger cities and towns [10]. Outcome Measures and Data Analysis We conducted the analysis of AIAN CSHCN prevalence, conditions and functional difficulties in several steps. First, descriptive and multivariate analysis methods were used to determine the weighted frequency of AIAN CSHCN in the US child population; the crude prevalence of AIAN CSHCN among all US children, all US CSHCN, and all AIAN; and the adjusted prevalence and odds ratios for being an AIAN CSHCN among all AIAN based on a limited set of socio-demographic variables available for all 361,000 screened children. The prevalence of AIAN CSHCN was determined for states in which at least 30 cases were sampled and the coefficient of variation (CV = standard error/mean) was less than 0.30.
Matern Child Health J Table 1 Estimated frequency/prevalence of AIAN CSHCN in the US general child population, among US CSHCN, and among AIAN child population and adjusted models of the association between being a Sociodemographic characteristic
Total
Sample (unweighted) frequency of AIAN CSHCN
1,051
Estimated frequency (weighted) of AIAN CSHCN (in thousands)
94
Crude Prevalence of AIAN CSHCN among all US children (per 10,000)
13
parent-reported AIAN CSHCN as a function of socio-demographic/ health characteristics: National Survey of Children with Special Health Care Needs, 2009–2010
Crude Prevalence of AIAN CSHCN among US CSHCN (per 10,000)
84
Crude Prevalence of AIAN CSHCN among AIAN child population (per 10,000)
Adjustedb prevalence of AIAN CSHCN among AIAN child population % (SE)
Adjustedb model for being AIAN CSHCN among AIAN child population AOR (95 % CI)
1,565
Age (years) 0–2
61
6
5
78
654
6.7 (1.53)
Reference
3–5
119
12
9
77
1,082
10.9 (2.56)
1.73 (0.85–3.50)
6–17
871
76
16
86
1,915
18.8 (1.45)
3.35 (1.98–5.67)
Gender Male
624
56
15
85
1,860
18.4 (1.74)
1.60 (1.17–2.18)
Female
425
38
11
83
1,278
12.6 (1.31)
Reference
\100 %
372
32
20
125
1,731
19.2 (2.62)
1.27 (0.71–2.26)
100–199 %
288
25
16
101
1,474
14.8 (1.93)
0.91 (0.54–1.55)
200–399 %
247
20
9
65
1,296
12.2 (1.74)
0.72 (0.42–1.23)
400? %
143
18
8
57
1,835
16.0 (2.89)
Reference
77
9
10
74
1,374
12.4 (2.89)
0.73 (0.39–1.33)
Income (FPL)a
Education Less than high school High school
247
27
18
123
1,538
15.6 (2.02)
0.96 (0.66–1.40)
More than high school
727
59
12
75
1,611
16.1 (1.53)
Reference
Urbanicity Large metro
355
44
8
58
1,781
17.8 (2.07)
2.47 (1.51–4.05)
99
11
16
107
2,294
21.2 (4.33)
3.12 (1.58–6.15)
Urban nonmetro
169
14
20
125
1,526
15.2 (2.22)
2.04 (1.19–3.50)
Urban small town
180
13
35
211
1,465
15.7 (2.54)
2.11 (1.23–3.62)
234
9
31
208
832
8.2 (1.50)
Reference
Medium/ small metro
Rural IHS regionc Alaska
172
2
112
1,028
739
9.0 (1.17)
Reference
East
341
46
9
58
1,790
16.9 (1.59)
2.11 (1.43–3.12)
Northern plains
375
18
26
166
1,585
17.6 (2.43)
2.21 (1.50–3.26)
63
12
9
82
1,860
16.3 (4.56)
2.01 (0.94–4.30)
100
17
33
246
1,169
12.0 (2.15)
1.39 (0.85–2.26)
Pacific coast Southwest
AIAN American Indian/Alaska Native, CSHCN Children with Special Health Care Needs, SE standard error, AOR adjusted odds ratio, FPL federal poverty level, IHS Indian Health Service a Data are based on the Department of Health and Human Services poverty guidelines. For most households surveyed in 2009 and 2010, 100 % of poverty level was defined as $22,050 for a family of 4 b
The model is adjusted for age, gender, income, highest level of education in the household, urbanicity and IHS region. Significant findings are shown in bold p \ 0.05. Multiple logistic regression was used to derive adjusted odds ratios (AOR)
c Alaska = AK (Alaska Administrative Area); East = AL, AR, CT, DE, FL, GA, IL, IN, KS, KY, LA, ME, MD, MA, MS, MO, NH, NJ, NY, NC, OH, OK, PA, RI, SC, TN, TX, VT, VA, WV, DC (Nashville and Oklahoma City Administrative Areas); Northern Plains = IA, MI, MN, MT, NE, ND, SD, WI, WY (Aberdeen, Bemidji, and Billings Administrative Areas); Pacific Coast = CA, ID, OR, WA, HI (California and Portland Administrative Areas); Southwest = AZ, CO, NV, NM, UT (Phoenix, Navajo, Albuquerque, and Tuscon Administrative Areas)
Second, we determined the prevalence of AIAN CSHCN as a function of the questions asked to screen for special health care needs. Five questions screened for: (1) the use of or need for more medical care, mental health services, or educational services than are generally required
by other children of the same age; (2) the use of or need for prescription medicines; (3) limitations in the ability to do things other children of the same age do; (4) the use of or need for special therapy or assistive devices; and/or (5) the use of or need for emotional, developmental, or behavioral
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treatment or counseling [8]. These questions were used as the basis for developing rates (Table 2) for single and combined categories of need: (1) prescription medication, (2) mental health services, (3) therapies, (4) elevated service use, (5) functional limitations, (6) prescription medication use only, (7) elevated service use only, (8) prescription medication and elevated service use combined. The first 5 categories were not exclusive while the last 3 categories were exclusive. Next, we calculated estimates for all of the 20 current chronic conditions and 14 functional difficulties measured by the survey (Table 3). Chronic conditions were assessed by asking parents, ‘‘For each condition, please tell me if a doctor or other health care provider ever told you that [survey child] had the condition, even if (he/she) does not have the condition now.’’ After each assessment of whether the parent was ever told their child had a condition (yes/no response options), a follow up item was asked to see if the
Table 2 Crude and estimated frequency and prevalence of screening qualifiers among AIAN CSHCN: National Survey of Children with Special Health Care Needs, 2009–2010 Qualification as CSHCN
Unweighted N
Weighted N
Weighted %
SE
Qualified on medicationa
474
64,880
70.3
4.27
Qualified on mental healthb
236
33,588
36.4
4.05
Qualified on special therapiesc
170
19,258
20.9
3.68
Qualified on elevated service used
305
40,309
43.7
4.15
Qualified on functional limitationse
178
20,896
22.6
3.22
Qualified on medication only
214
32,994
35.8
4.08
Qualified on elevated service use only
129
21,036
22.8
4.21
Qualified on prescription medication and elevated service use
147
17,329
18.8
2.63
CSHCN children with special health care needs, SE standard error a
Use of or need for prescription medication
b
Use of or need for emotional, developmental, or behavioral treatment or counseling
c
Use of or need for special therapy (i.e., physical, occupational, or speech therapy)
d
Use of or need for more medical care, mental health services, or educational services than are generally required by same-age children
e
Limitations in the ability to do things other children of the same age do
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child currently had the condition (yes/no response options). Only chronic conditions identified as ‘‘current’’ at the time of data collection are the focus of this investigation. The following conditions were assessed: attention deficit/ attention deficit hyperactivity disorder (ADD/ADHD), allergies, anxiety, arthritis/joint pain, asthma, autism spectrum disorder, conduct disorder, blood disorder, brain injury, cerebral palsy, cystic fibrosis, depression, developmental delay, diabetes, Down Syndrome, migraine, heart disease, mental retardation, muscular dystrophy, and seizure disorder. To determine a child’s status regarding 14 functional difficulties parents were asked: ‘‘Would you say [survey child] experiences a lot, a little, or no difficulty…?’’ Each of 14 functional difficulties were queried: vision even when wearing contacts or glasses; hearing even when using hearing aids; breathing or respiration (e.g., wheezing or shortness of breath); swallowing, digesting food, or metabolism; blood circulation; behavior (acting-out, fighting, bullying, or arguing in children 18 months to 17 years); making and keeping friends (children 3–17 years); repeated/ chronic physical pain, including headaches; self-care; coordination/moving around; using hands; learning/understanding/paying attention; speaking/communicating/being understood; feeling anxious/depressed (children 18 months to 17 years). A 2-level dummy variable was created for each functional difficulty: some difficulty (a little or a lot) versus no difficulty. Prevalences for each of the 20 chronic conditions and 14 functional difficulties among AIAN CSHCN were determined. Stable estimates were compared to estimates for white CSHCN (Table 3). Finally, several indicators were developed to examine the burden of disease in AIAN versus white CSHCN. First, summary categories including the prevalences of CSHCN with 0, 1–2, and C3 chronic conditions and those with 0, 1–2, and C3 functional difficulties were developed for AIAN CSHCN and compared with the same estimates for white CSHCN (Table 4). The 14 functional difficulties were further grouped into additional summary categories characterizing CSHCN with a little or a lot of difficulty versus no difficulty with (1) emotional or behavioral factors, (2) participating in activities, and (3) one or more bodily functions. Lastly, a composite variable, the functional ability of the CSHCN, was created based on responses to two questions regarding the frequency and degree of the child’s limitations: (1) ‘‘How often has your child’s condition affected his/her ability to do things other children his/her age do?’’ (never/sometimes/usually/always) and (2) ‘‘Do your child’s health problems affect his/her ability to do things a great deal, some, or very little?’’ A dichotomous variable representing the impact of the child’s limitations was derived by collapsing the ‘‘sometimes,’’ ‘‘usually’’ and ‘‘always’’
Matern Child Health J Table 3 Crude and estimated frequency and prevalence of selected chronic conditions and functional difficulties among AIAN CSHCN compared to white CSHCN: National Survey of Children with Special Health Care Needs, 2009–2010 AIAN CSHCN
White CSHCN
Unweighted N
Weighted N
% (SE)
ADD/ADHD
198
28,544
31.0 (3.55)
Allergies Asthma
308 255
49,315 41,391
53.6 (4.21) 44.9 (4.00)
95
17,005
18.4 (3.44)
Unweighted N
Weighted N
% (SE)
8,294
2,076,603
31.6 (0.48)
13,104 8,194
3,179,989 1,952,832
48.3 (0.52) 29.7 (0.48)
2,888
757,222
11.5 (0.35) 15.9 (0.39)
Chronic conditionsa
Conduct disorder Developmental delay
157
24,671
26.7 (4.00)
4,299
1,047,771
Migraine headaches
88
14,426
15.6 (2.80)
2,498
642,751
9.8 (0.31)
Functional difficulties Hearing
67
7,564
8.2 (1.97)
1,462
357,673
5.4 (0.23)
Vision
119
16,592
18.0 (3.66)
3,628
901,202
13.7 (0.37)
Respiration
318
47,843
51.9 (4.12)
11,438
2,722,009
41.4 (0.51)
Digestion
141
15,999
17.4 (2.62)
4,913
1,229,374
18.7 (0.41)
48
5,893
6.4 (1.53)
1,443
343,672
210
30,939
33.5 (3.97)
7,284
1,815,151
Circulation Pain
5.2 (0.24) 27.6 (0.47)
Self-care
131
17,599
21.1 (3.65)
4,786
1,140,566
18.4 (0.41)
Gross motor
150
18,495
20.0 (2.94)
5,274
1,261,120
19.1 (0.40)
Fine motor
114
12,263
13.3 (2.33)
4,394
1,048,368
15.9 (0.37)
Learning Communication
375 259
52,305 38,650
57.2 (4.17) 42.3 (4.31)
13,511 7,764
3,310,117 1,929,281
50.9 (0.52) 29.7 (0.49)
Anxiety/depression
327
50,762
56.7 (4.02)
11,562
2,800,013
43.6 (0.52)
Behavior
333
48,707
54.3 (4.10)
9,795
2,484,110
38.6 (0.52)
Making/keeping friends
221
28,886
35.4 (4.00)
8,103
1,956,861
31.7 (0.50)
Bolded items are significantly different at a p value \ 0.05 and critical z of 1.96 in z tests for the difference of two proportions AIAN American Indian/Alaska Native, CSHCN children with special health care needs, SE standard error a
Of the 20 chronic conditions included in the survey the above list includes only estimates which are non-overlapping with the survey’s 14 functional difficulties and for which stable estimates could be obtained (i.e., with a coefficient of variation of \0.3)
responses on the first question with ‘‘a great deal’’ responses to the second question to represent the most impacted children. The ‘‘never’’ and ‘‘very little’’ responses to the first question and second questions represented the lower impact level. All estimates were statistically weighted to reflect population totals using sample weights. Chi square tests of independence were used in bivariate analysis (race 9 outcome) to determine significance followed by z test for the difference between two proportions for post hoc testing, Bonferroni adjusted for multiple tests when needed. The statistical analysis was conducted using SUDAAN 11.0 (Research Triangle Institute, Research Triangle Park, NC), which accounts for a complex sample design involving stratification, clustering, and multistage sampling. Various measures of multicollinearity among the independent variables were within acceptable limits (VIF \ 1.4, Tolerance [ 0.75, and r \ 0.48).
Results In the overall sample 7,320 AIAN children were screened and 1,051 were positively identified as CSHCN (Table 1). The crude prevalence of AIAN CSHCN among all US children was 13/10,000 (0.13 %). Among US CSHCN the prevalence was 84/10,000 (0.84 %) and among AIAN children 1,565/10,000 (15.7 %). The crude rate among AIAN was not significantly different from the rate for white CSHCN (16.3 %, SE = 0.15; z = -0.49, p = 0.6241). AIAN CSHCN had higher adjusted odds of being 6–17 years of age and male, residing in a metropolitan/urban area in Eastern or Northern Plains regions. Reliable prevalence estimates (i.e., based on[30 cases and CV \ 0.3) of %CSHCN among the AIAN child population could be determined for 8 states: Wyoming (25.2 %, SE = 5.7); Oklahoma (18.9 %, SE = 2.8); Montana (13.9 %, SE = 2.2); North Dakota (13.8 %, SE = 2.3);
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Matern Child Health J Table 4 Weighted estimates of the number of chronic conditions/ functional difficulties, type of difficulties, and degree of conditions/ difficulties among AIAN CSHCN compared to white CSHCN: National Survey of Children with Special Health Care Needs, 2009–2010 AIAN CSHCN
White CSHCN
Weighted %
Weighted %
SE
SE
Number of chronic health conditions reported from list of 20 different conditions queried in the survey 3 or more current conditions
38.8a
4.03
28.3a
0.48
a
1-2 current conditions
48.8
4.20
59.4a
0.52
0 conditions
12.4
3.21
12.2
0.35
Number of functional difficulties reported from list of 14 different difficulties queried in the survey 3 or more current functional difficulties 1-2 current functional difficulties 0 functional difficulties
70.0a
3.49
55.4a
0.51
25.0a
3.18
34.5a
0.48
5.0
2.23
10.2
0.33
Difficulty with one or more emotional or behavioral factors A little or a lot None
70.1b
3.69
57.7b
0.51
b
3.69
42.3b
0.51
29.9
Difficulty with one or more activities of participation A little or a lot
65.4
3.82
59.5
0.51
None
34.6
3.82
40.5
0.51
3.94 3.94
65.2 34.8
0.49 0.49
Difficulty with one or more body functions A little or a lot None
72.8 27.2
How much and how often child affected by condition(s) Sometimes/usually/always/a great deal
74.3b
3.58
62.6b
0.50
Never/very little
25.7b
3.58
37.4b
0.50
AIAN American Indian/Alaska Native, CSHCN children with special health care needs, SE standard error a
Significantly different based on Bonferroni corrected multiple post hoc tests of AI/AN compared to white CSHCN performed using p value \ 0.0167 and critical z of 2.4 in z tests for the difference of two proportions b Significantly different post hoc test of AIAN compared to white CSHCN performed using p value \ 0.05 and critical z of 1.96 in z tests for the difference of two proportions
Arizona (13.0 %, SE = 3.7); South Dakota (10.6 %, SE = 2.2); New Mexico (9.9 %, SE = 2.0); and Alaska (7.4 %, SE = 0.8). For AIAN CSHCN, 70 % of parents reported that their children needed or used some form of prescription medication with approximately, half of those (36 %) having medication needs only (Table 2). About 44 % of AIAN CSHCN needed or used elevated levels of service but, again, approximately half of them (23 %) had elevated service use needs exclusively with no other qualifiers. Over one third qualified as CSHCN based on needing or using
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mental health services (36 %). Fewer required some form of special therapy or qualified on the basis of functional limitations (21 and 23 %, respectively). Almost 20 % needed or used both elevated service levels and prescription medication. No significant differences were noted between AIAN and white CSHCN in the rates for any of the listed screener criteria (critical z = 1.96, p \ 0.05). Chronic conditions with reliable estimates and those that did not overlap with one or more of the 14 functional difficulties are listed in Table 3, along with statistical comparisons to the corresponding estimates for white CSHCN. The prevalences of 4 of the 6 conditions were significantly higher (critical z = 1.96, p \ 0.05) in AIAN CSHCN: conduct disorder (z = 2.00, p = 0.0455), migraine headaches (z = 2.06, p = 0.0394), developmental delay (z = 2.69, p = 0.0071), and asthma (z = 3.77, p = 0.0002), the latter two conditions being 11–15 percentage points greater among AIAN CSHCN compared to whites. With regard to differences in rates of functional difficulties measured by the survey, prevalences were significantly higher (critical z = 1.96, p \ 0.05) among AIAN CSHCN for difficulties related to respiration (z = 2.53, p = 0.0114), communication (z = 2.90, p = 0.0037), behavior problems (z = 3.80, p = 0.0001) and anxiety/depression (z = 3.23, p = 0.0012) compared to whites. When the number of conditions/difficulties were aggregated and compared to whites, AIAN CSHCN were significantly (Bonferroni adjusted critical z = 2.4, p \ 0.0167) more likely to have 3 or more chronic conditions (z = 2.59, p = 0.0096) and less likely to have 1-2 conditions (z = -2.50, p = 0.0124), but equally likely to have none of the chronic conditions queried (z = 0.06, p = 0.9522). A similar pattern was found for aggregated functional difficulties i.e., a significantly greater likelihood of AIAN CSHCN with 3 or more difficulties (z = 4.14, p \ 0.0001), lower likelihood of 1–2 difficulties (z = -2.95, p = 0.0032), but equal likelihood of having none of the difficulties queried (z = -2.31, p = 0.0209). When conditions/difficulties were grouped by type and compared across race (critical z = 1.96, p \ 0.05), AIAN CSHCN were more likely than white CSHCN to have some level of difficulty with emotional behavioral factors (z = 3.33, p = 0.0009), but were equally as likely to have difficulty with activities of participation and bodily functions (respectively, z = 1.53, p = 0.126 and z = 1.91, p = 0.0561). Overall, AIAN CSHCN were more consistently and more often greatly affected in their daily activities compared to white CSHCN (z = 3.24, p = 0.0012).
Discussion Current population studies on the prevalence of AIAN CSHCN or children with chronic disabling conditions and
Matern Child Health J
their health status are scarce and do not lend themselves to comparison with the estimates reported in the current analysis. For example, in the 2000 Census, disability among the AIAN children was determined only for the age category 5 to 15 years. The reported prevalence of disability was 7.7 %, the highest across all race/ethnicities, but based on a relatively narrow definition of disability (e.g., functional difficulties such as walking, learning, concentrating, dressing, bathing, working, etc.) [11]. Another source of information on the special health care needs of AIAN children is the Office of Special Education Programs’ Data Analysis System (DANS). DANS is a repository for all of the data mandated by section 618 of the Individuals with Disabilities Education Act (IDEA) to be collected annually from states. The data include all disabled children served in the US and territories in addition to the Bureau of Indian Education Schools. In the latest reported year (2007) the prevalence of disabilities among AIAN infants/toddlers, 3–5 year-olds, and 6–21 year-olds was 2.8, 8.6, and 13.9 % with respective risk ratios of 1.3, 1.4, and 1.7 relative to white children [3]. Among children 6–21 years of age, the AIAN children with disabilities were approximately twice as likely to be served for specific learning disabilities (49 %), speech/ language impairment (17 %), and emotional disturbances (8 %) compared to the white children. While estimates may not be comparable with those reported here due to fundamental differences in data sources, the areas of greatest concern bore some similarity to the AIAN chronic conditions/functional difficulties of greatest concern shown in Table 3. However, the assertion of overrepresentation of AIAN children in Special Education (i.e., relative to their proportion in the population) has been addressed and judged erroneous after adjusting for a host of confounding variables in a multilevel analysis [12]. In summary, little coherence can be found across point estimates of AIAN child disability at least in part due to variation in samples, definitions, and nature of the data sources. The NS-CSHCN provides national estimates based on a comprehensive definition of special health needs drawn from a representative sample of AIAN children across the age range from 0 to 17 years of age. This source indicates that the crude prevalence of SHCN among AIAN children is not significantly different from that among US white children; however, certain conditions can be said to predominate among AIAN CSHCN to a greater extent than is found for white CSHCN (Table 3). These chronic conditions/functional difficulties include: asthma, respiration; conduct disorder, behavior; anxiety/depression; developmental delay, communication; and migraine headaches. In addition, more AIAN CSHCN are affected to a greater extent than white CSHCN, both in terms of the number of co-morbidities and the limitations they impose.
Racial disparities (AIAN vs. white) can be found in the general population for select conditions characterized by similar disparities among CSHCN detailed in the current report, providing some support for these findings. For example, results aggregated across several years (2001–2005) have shown higher AIAN rates of lifetime and current asthma in addition to significant adjusted odds for having current asthma [13]. Other findings have indicated significantly higher rates or trends toward higher prevalences for asthma; headaches; respiratory allergies; emotional, developmental or behavioral difficulties needing treatment or counseling; and depression/ anxiety among AIAN 10–17 year-olds [14]. Finally, AIAN behavioral difficulties indicative of both internalizing (e.g., anxiety/depression) and externalizing (e.g., aggression or hostility) processes reportedly exceeded those of white adolescents [15]. Given the parity that exists in the overall prevalence of special health care needs among AIAN compared to white CSHCN, it is unclear what accounts for the greater impact on AIAN CSHCN regarding the number of comorbid conditions/difficulties and their limiting effects (Table 4). Apart from the detrimental socioeconomic circumstances in many AIAN communities, an additional contributing factor to the poorer outcomes of AIAN CSHCN may derive from several documented differences in health care access [16–18]. For example, multiple sources indicate that AIAN children under 18 years of age were more likely to be uninsured compared to white children [14, 16]. In addition to insurance coverage issues, AIAN children in general have been less likely to receive the services of a medical home [18]. The likelihood that AIAN children living in 7 states had a medical home was 27 percentage points lower than white children (after adjustment for age, insurance status, CSHCN status, household poverty level, highest level of household education) and AIAN CSHCN were less likely than AIAN non-CSHCN to have a medical home. A medical home is capable of reducing racial/ethnic disparity in unmet health needs and may help to reduce or prevent medical complexity [19]. We have shown that significantly more AIAN CSHCN are affected by special health care needs of greater complexity than their white counterparts, a situation which might be ameliorated with greater attention to care coordination within a medical home. With current changes in the health care coverage requirements (i.e., greater emphasis on care coordination) and the recent codification of the Indian Health Care Improvement Act (with emphasis on preventive maternal/infant care and behavioral health care), improvements can be expected in health care service to AIAN children in general and AIAN CSHCN specifically. Nevertheless, further investigation will be needed to determine the relationship between the medical complexity and coordinated health care access
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among AIAN CSHCN in the new health care environment. The strengths of this study are in the large, nationally representative sample in addition to data on co-morbidity and functionality. However, due to the remote location and lower than average telephone service among many AIAN families, sampling bias may reduce the representative nature of the AIAN child sample from which estimates were drawn [20]. Additional weaknesses include reliance on parent report for assigning children to diagnostic categories and evaluating functionality. These requirements may be difficult for parents in general, but also may be fundamentally different for AIAN parents compared to non-AIAN parents based on cultural differences in the perception of disability that may lead to under-reporting [21, 22]. However, the similarity in conditions/difficulties identified by AIAN survey parents as particularly problematic were similar to those identified by the Office of Special Education Programs, suggesting that parents’ judgments were not at odds with professionals providing remedial services. Estimates are based on relatively small numbers, but represent some of the largest existing representative samples of AIAN CSHCN. Because this study is limited to CSHCNs, estimates for the prevalence of chronic conditions and functional difficulties, and the characteristics of AIAN CSHCN may differ from children in the general AIAN population. Finally, the crosssectional nature of the data precludes any inferences about directionality of associations. Conclusion The current study of AIAN CSHCN chronic disease morbidity/co-morbidity and functional difficulties indicated that the prevalence of CSHCN among the AIAN child population was similar to that of CSHCN in the white population. However, significant differences were found for AIAN CSHCN in the form of greater disease burden based on the number of co-morbid conditions and their impact on the daily functioning of AIAN CSHCN. Significant differences were also noted in the prevalence of conditions such as conduct disorder, behavior problems, and anxiety/depression; migraine headaches; developmental delay and communication; and asthma/respiration. Care must be taken to ensure that AIAN CSHCN are provided the appropriate level of coordinated care (in a medical home) required to ameliorate the severity of their conditions and reduce the disease burden. Conflict of interest
None.
Ethical standard No IRB approval was required for this study, which is based on the secondary analysis of a public-use federal database.
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References 1. U.S. Department of Health and Human Services. Healthy People 2010 Midcourse Review.7 May 2013. http://www.healthypeople. gov/2010/data/midcourse/html/focusareas/FA16TOC.htm. 2. Castor, M. L., Smyser, M. S., Taualii, M. M., Park, A. N., Lawson, S. A., & Forquera, R. A. (2006). A nation-wide population-based study identifying health disparities between American Indians/ Alaska Natives and the general populations living in select urban counties. American Journal of Public Health, 96, 1478–1484. 3. U.S. Department of Education, Office of Special Education and Rehabilitative Services, Office of Special Education Programs, 31st Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2009, Washington, DC, 2012. 4. Faircloth, S. C. (2006). Early childhood education among American Indian/Alaska Native children with disabilities: Implications for research and practice. Rural Special Education Quarterly, 25(1), 25–31. 5. Blumberg, S. J., Olson, L., Frankel, M., Osborn, L., Becker, C. J., Srinath, K. P., et al. (2003). Design and Operation of the National Survey of Children with Special Health Care Needs, 2001. Vital Health Stat., 1(41), 1–136. 6. Blumberg, S. J., Welch, E. M., Chowdhury, S. R., Upchurch, H. L., Parker, E. K., & Skalland, B. J. (2008). Design and operation of the National Survey of Children with Special Health Care Needs, 2005–2006. Vital and Health Statistics, 1(45), 1–188. 7. McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P. W., et al. (1998). A new definition of children with special health care needs. Pediatrics, 102(1 pt 1), 137–140. 8. Bethell, C. D., Read, D., Stein, R. E., Blumberg, S. J., Wells, N., & Newacheck, P. W. (2002). Identifying children with special health care needs: Development and evaluation of a short screening tool. Ambulatory Pediatrics, 2(1), 38–48. 9. U.S. Department of Health and Human Services. Indian Health Service. Indian Health Service Areas. http://www.ihs.gov/?mod ule=AreaOffices. Accessed 22 May 2013. 10. Morrill, R., Cromartie, J., & Hart, G. (1999). Metropolitan, urban, and rural commuting areas: Toward a better depiction of the United States settlement system. Urban Geography, 20(8), 727–748. 11. Waldrop, J., & Stern, S. M. (2003). Disability Status 2000, Census 2000 Brief. Washington, DC: U.S. Department of Commerce, Economics and Statistics Administration, U.S. Census Bureau. 12. Hibel, J., Faircloth, S. C., & Farkas, G. (2008). Unpacking the placement of American Indian and Alaska Native students in special education programs and services in the early grades: School readiness as a predictive variable. Harvard Educational Review, 78(3), 498–528. 13. Brim, S. N., Rudd, R. A., Funk, R. H., & Callahan, D. B. (2008). Asthma prevalence among US children in underrepresented minority populations: American Indian/Alaska Native, Chinese, Filipino, and Asian Indian. Pediatrics, 122, e217–e222. 14. Lau, M., Lin, H., & Flores, G. (2012). Racial/ethnic disparities in health and healthcare among US adolescents. Health Services Research, 47(5), 2031–2059. 15. Rutman, S., Park, A., Castor, M., Taualii, M., & Forquera, R. A. (2008). Urban Indian and Alaska Native youth: Youth Risk Behavior Survey, 1997–2003. Maternal and Child Health Journal, 12, S76–S81. 16. Bloom, B., Cohen, R. A., & Freeman, G. (2010). Summary health statistics for U.S. children: National Health Interview Survey, 2009. National Center for Health Statistics. Vital and Health Statistics, 10(247), 1–82.
Matern Child Health J 17. Flores, G. (2010). Committee on Pediatric Research. Technical report—Racial and ethnic disparities in health and healthcare of children. Pediatrics, 125(4), e979–e1020. 18. Barradas, D. T., Kroelinger, C. D., & Kogan, M. D. (2012). Medical home access among American Indian and Alaska Native children in 7 states: National Survey of Children’s Health. Maternal and Child Health Journal, 16, S6–S13. 19. Bennett, A. C., Rankin, K. M., & Rosenberg, D. (2012). Does a medical home mediate racial disparities in unmet healthcare needs among children with special health care needs? Maternal and Child Health Journal, 16, S330–S338.
20. U.S. Government Accountability Office. Telecommunications: Challenges to assessing and improving telecommunications for Native Americans on tribal lands. GAO-06-189. January 2006. http://www.gao.gov/new.items/d06189.pdf. Accessed 22 May 2013. 21. Pengra, L. M., & Godfrey, J. G. (2001). Different boundaries, different barriers: Disabilities studies and Lakota culture. Disability Studies Quarterly, 21(3), 36–51. 22. Lovern, L. (2008). Native American worldview and the discourse on disability. Essays in Philosophy, 9(1), 1–10.
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Chronic Conditions, Functional Difficulties, and Disease Burden Among American Indian/Alaska Native Children with Special Health Care Needs, 2009–2010 Mary Kay Kenney • Judy Thierry
Springer Science+Business Media New York (outside the USA) 2014
Abstract The purpose of this study was to determine the prevalence of chronic conditions and functional difficulties of American Indian/Alaska Native (AIAN) children with special health care needs (CSHCN). We conducted bivariate and multivariable analysis of cross-sectional data on 40,202 children from the 2009–2010 National Survey of Children with Special Health Care Needs aged birth through 17 years, including 1,051 AIAN CSHCN. The prevalence of AIAN CSHCN was 15.7 %, not significantly different from the prevalence of US white CSHCN (16.3 %). As qualifiers for special needs status among AIAN children the use of or need for prescription medication was the most frequent (70 %), compared to the lower rates of need for elevated service use (44 %) and emotional, mental, or behavioral treatment/counseling (36 %). Asthma (45 %), conduct disorder (18 %), developmental delay (27 %), and migraine headaches (16 %) were significantly more common chronic conditions among AIAN CSHCN compared to white CSHCN, as were functional difficulties with respiration (52 %), communication (42 %), anxiety/depression (57 %), and behavior (54 %). AIAN CSHCN were also more likely to have 3 or more chronic conditions (39 vs. 28 %, respectively) and 3 or more functional difficulties (70 vs. 55 %, respectively) than white CSHCN. Results indicated a greater impact on
The views expressed are the authors’ and not necessarily those of the Health Resources and Services Administration or the US Department of Health and Human Services. M. K. Kenney (&) J. Thierry US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, 5600 Fishers Lane, Room 18-41, Rockville, MD 20857, USA e-mail: [email protected]
the daily activities of AIAN CSHCN compared to white CSHCN (74 vs. 63 %). Significantly greater disease burden among AIAN CSHCN suggests that care must be taken to ensure an appropriate level of coordinated care in a medical home to ameliorate the severity and complexity of their conditions. Keywords American Indian and Alaska Native Children with special health care needs Chronic conditions Functional difficulties Racial disparities
Introduction Significant progress has been made in maternal and child health (MCH) during the last decades. According to a recent review of progress for Healthy People (HP) 2010, two-thirds of the MCH objectives with available data had moved toward or achieved the HP 2010 targets [1]. In spite of such commendable progress nationally, racial disparities of 100 % or more have been noted, particularly affecting black and American Indian/Alaska Native (AIAN) mothers and children. Noteworthy factors included: elevated and increasing rates of very low birth weight, less than optimal prenatal care and maternal high risk behaviors, including high rates of maternal smoking. Analysis of risk factors for poor birth outcomes in Urban Indian Health Organization (UIHO) service areas indicated significant disparities between AIANs and the general population in teen birth rates, receipt of prenatal care, and smoking/alcohol consumption during pregnancy [2]. Such patterns in MCH would suggest that relatively high rates of special health care needs might be likely among AIAN children. AIAN children with disabilities were reportedly somewhat more likely to receive Individuals
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with Disabilities Education Act (IDEA) Part C Early Intervention services (birth to 3 years of age) than children of other racial/ethnic groups (risk ratio = 1.1) [3]. In addition, AIAN students also had the highest risk ratio (i.e., 1.5) for being served under IDEA Part B preschool programs (ages 3–5 years) compared to other racial/ethnic groups. Specific learning disabilities (53.3 %), speech/ language impairment (16.3 %), emotional disturbance (8.0 %), mental retardation (7.4 %) and other health impairments (7.4 %) were the 5 largest disability categories for AIAN children 6–21 years of age receiving special education and related services under Part B in that same time period (2007). Although significant numbers of AIAN children seem to be affected by disabilities, no comprehensive and nationally representative data describing the nature of disabilities among children in AIAN communities are available [4]. Such data would enable a better understanding of AIAN disabilities, possibly allowing preliminary identification of associated factors on which to base preventive measures and intervention practices within AIAN communities. The use of a large scale quantitative dataset with a nationally representative sample of AIAN children such as the National Survey of Children with Special Health Care Needs (NS-CSHCN) has the potential of producing more useful information than is currently available. This study’s objective is to determine the prevalence of AIAN children with special health care needs (CSHCN) in the US child population, among the population of CSHCN, and among the population of AIAN children. In addition, we will describe the criteria qualifying AIAN children as having special health care needs. Also included are prevalence rates for parent-reported chronic conditions and functional difficulties and measures of the level of impact of the special needs conditions on AIAN CSHCN compared to a reference group of white CSHCN. These data will provide a profile of parent-reported chronic conditions and functional difficulties of AIAN CSHCN as a step toward characterizing the special health care needs of this population.
Methods Data Source The NS-CSHCN is a quadrennial random-digit-dialing survey that was designed to produce national and statespecific prevalence estimates of CSHCN, describe the types of services they need and use, and provide information regarding the system of services available to them [5, 6]. As a combined effort of the National Center for Health Statistics (NCHS) and the Maternal and Child Health
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Bureau (MCHB), the survey uses the Bureau’s conceptualization of CSHCN, operationally defining a special health care need as a medical, behavioral or other condition that has lasted, or would be expected to last, at least 1 year and resulted in at least one of the following: using or needing more medical care, mental health services, or educational services than are generally required by other children of the same age; using or needing prescription medicines; having limitations in the ability to do things other children of the same age do; using or needing special therapy (i.e., physical, occupational, or speech therapy) or assistive devices; or using or needing emotional, developmental, or behavioral treatment or counseling [7, 8]. The 2009–2010 NSCSHCN included a main sample of 40 242 CSHCN. Details of the survey methodology are presented elsewhere [5, 6]. No oversampling of minority populations was conducted. The NCHS Research Ethics Review Board approved all data collection procedures for the survey. Socio-demographic Variables Socio- demographic characteristics (Table 1) included in the analysis were: age (0–2, 3–5, 6–17 years) and gender (male/female), household poverty status (\100, 100–199, 200–399, and 400? % Federal Poverty Level), highest level of education in the household (\high school, high school, [ high school), urbanicity (large metro, medium/ small metro, urban non-metro, urban small town, and rural); and region of the country derived from the Indian Health Service Administrative Areas (Alaskan, Eastern, Northern Plains, Pacific Coast, Southwestern) [9]. The urbanicity measure is based on Rural–Urban Commuting Area (RUCA) codes which use Census Bureau and work commuting information to differentiate geographic classification based on city/town size and functional relationships to larger cities and towns [10]. Outcome Measures and Data Analysis We conducted the analysis of AIAN CSHCN prevalence, conditions and functional difficulties in several steps. First, descriptive and multivariate analysis methods were used to determine the weighted frequency of AIAN CSHCN in the US child population; the crude prevalence of AIAN CSHCN among all US children, all US CSHCN, and all AIAN; and the adjusted prevalence and odds ratios for being an AIAN CSHCN among all AIAN based on a limited set of socio-demographic variables available for all 361,000 screened children. The prevalence of AIAN CSHCN was determined for states in which at least 30 cases were sampled and the coefficient of variation (CV = standard error/mean) was less than 0.30.
Matern Child Health J Table 1 Estimated frequency/prevalence of AIAN CSHCN in the US general child population, among US CSHCN, and among AIAN child population and adjusted models of the association between being a Sociodemographic characteristic
Total
Sample (unweighted) frequency of AIAN CSHCN
1,051
Estimated frequency (weighted) of AIAN CSHCN (in thousands)
94
Crude Prevalence of AIAN CSHCN among all US children (per 10,000)
13
parent-reported AIAN CSHCN as a function of socio-demographic/ health characteristics: National Survey of Children with Special Health Care Needs, 2009–2010
Crude Prevalence of AIAN CSHCN among US CSHCN (per 10,000)
84
Crude Prevalence of AIAN CSHCN among AIAN child population (per 10,000)
Adjustedb prevalence of AIAN CSHCN among AIAN child population % (SE)
Adjustedb model for being AIAN CSHCN among AIAN child population AOR (95 % CI)
1,565
Age (years) 0–2
61
6
5
78
654
6.7 (1.53)
Reference
3–5
119
12
9
77
1,082
10.9 (2.56)
1.73 (0.85–3.50)
6–17
871
76
16
86
1,915
18.8 (1.45)
3.35 (1.98–5.67)
Gender Male
624
56
15
85
1,860
18.4 (1.74)
1.60 (1.17–2.18)
Female
425
38
11
83
1,278
12.6 (1.31)
Reference
\100 %
372
32
20
125
1,731
19.2 (2.62)
1.27 (0.71–2.26)
100–199 %
288
25
16
101
1,474
14.8 (1.93)
0.91 (0.54–1.55)
200–399 %
247
20
9
65
1,296
12.2 (1.74)
0.72 (0.42–1.23)
400? %
143
18
8
57
1,835
16.0 (2.89)
Reference
77
9
10
74
1,374
12.4 (2.89)
0.73 (0.39–1.33)
Income (FPL)a
Education Less than high school High school
247
27
18
123
1,538
15.6 (2.02)
0.96 (0.66–1.40)
More than high school
727
59
12
75
1,611
16.1 (1.53)
Reference
Urbanicity Large metro
355
44
8
58
1,781
17.8 (2.07)
2.47 (1.51–4.05)
99
11
16
107
2,294
21.2 (4.33)
3.12 (1.58–6.15)
Urban nonmetro
169
14
20
125
1,526
15.2 (2.22)
2.04 (1.19–3.50)
Urban small town
180
13
35
211
1,465
15.7 (2.54)
2.11 (1.23–3.62)
234
9
31
208
832
8.2 (1.50)
Reference
Medium/ small metro
Rural IHS regionc Alaska
172
2
112
1,028
739
9.0 (1.17)
Reference
East
341
46
9
58
1,790
16.9 (1.59)
2.11 (1.43–3.12)
Northern plains
375
18
26
166
1,585
17.6 (2.43)
2.21 (1.50–3.26)
63
12
9
82
1,860
16.3 (4.56)
2.01 (0.94–4.30)
100
17
33
246
1,169
12.0 (2.15)
1.39 (0.85–2.26)
Pacific coast Southwest
AIAN American Indian/Alaska Native, CSHCN Children with Special Health Care Needs, SE standard error, AOR adjusted odds ratio, FPL federal poverty level, IHS Indian Health Service a Data are based on the Department of Health and Human Services poverty guidelines. For most households surveyed in 2009 and 2010, 100 % of poverty level was defined as $22,050 for a family of 4 b
The model is adjusted for age, gender, income, highest level of education in the household, urbanicity and IHS region. Significant findings are shown in bold p \ 0.05. Multiple logistic regression was used to derive adjusted odds ratios (AOR)
c Alaska = AK (Alaska Administrative Area); East = AL, AR, CT, DE, FL, GA, IL, IN, KS, KY, LA, ME, MD, MA, MS, MO, NH, NJ, NY, NC, OH, OK, PA, RI, SC, TN, TX, VT, VA, WV, DC (Nashville and Oklahoma City Administrative Areas); Northern Plains = IA, MI, MN, MT, NE, ND, SD, WI, WY (Aberdeen, Bemidji, and Billings Administrative Areas); Pacific Coast = CA, ID, OR, WA, HI (California and Portland Administrative Areas); Southwest = AZ, CO, NV, NM, UT (Phoenix, Navajo, Albuquerque, and Tuscon Administrative Areas)
Second, we determined the prevalence of AIAN CSHCN as a function of the questions asked to screen for special health care needs. Five questions screened for: (1) the use of or need for more medical care, mental health services, or educational services than are generally required
by other children of the same age; (2) the use of or need for prescription medicines; (3) limitations in the ability to do things other children of the same age do; (4) the use of or need for special therapy or assistive devices; and/or (5) the use of or need for emotional, developmental, or behavioral
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treatment or counseling [8]. These questions were used as the basis for developing rates (Table 2) for single and combined categories of need: (1) prescription medication, (2) mental health services, (3) therapies, (4) elevated service use, (5) functional limitations, (6) prescription medication use only, (7) elevated service use only, (8) prescription medication and elevated service use combined. The first 5 categories were not exclusive while the last 3 categories were exclusive. Next, we calculated estimates for all of the 20 current chronic conditions and 14 functional difficulties measured by the survey (Table 3). Chronic conditions were assessed by asking parents, ‘‘For each condition, please tell me if a doctor or other health care provider ever told you that [survey child] had the condition, even if (he/she) does not have the condition now.’’ After each assessment of whether the parent was ever told their child had a condition (yes/no response options), a follow up item was asked to see if the
Table 2 Crude and estimated frequency and prevalence of screening qualifiers among AIAN CSHCN: National Survey of Children with Special Health Care Needs, 2009–2010 Qualification as CSHCN
Unweighted N
Weighted N
Weighted %
SE
Qualified on medicationa
474
64,880
70.3
4.27
Qualified on mental healthb
236
33,588
36.4
4.05
Qualified on special therapiesc
170
19,258
20.9
3.68
Qualified on elevated service used
305
40,309
43.7
4.15
Qualified on functional limitationse
178
20,896
22.6
3.22
Qualified on medication only
214
32,994
35.8
4.08
Qualified on elevated service use only
129
21,036
22.8
4.21
Qualified on prescription medication and elevated service use
147
17,329
18.8
2.63
CSHCN children with special health care needs, SE standard error a
Use of or need for prescription medication
b
Use of or need for emotional, developmental, or behavioral treatment or counseling
c
Use of or need for special therapy (i.e., physical, occupational, or speech therapy)
d
Use of or need for more medical care, mental health services, or educational services than are generally required by same-age children
e
Limitations in the ability to do things other children of the same age do
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child currently had the condition (yes/no response options). Only chronic conditions identified as ‘‘current’’ at the time of data collection are the focus of this investigation. The following conditions were assessed: attention deficit/ attention deficit hyperactivity disorder (ADD/ADHD), allergies, anxiety, arthritis/joint pain, asthma, autism spectrum disorder, conduct disorder, blood disorder, brain injury, cerebral palsy, cystic fibrosis, depression, developmental delay, diabetes, Down Syndrome, migraine, heart disease, mental retardation, muscular dystrophy, and seizure disorder. To determine a child’s status regarding 14 functional difficulties parents were asked: ‘‘Would you say [survey child] experiences a lot, a little, or no difficulty…?’’ Each of 14 functional difficulties were queried: vision even when wearing contacts or glasses; hearing even when using hearing aids; breathing or respiration (e.g., wheezing or shortness of breath); swallowing, digesting food, or metabolism; blood circulation; behavior (acting-out, fighting, bullying, or arguing in children 18 months to 17 years); making and keeping friends (children 3–17 years); repeated/ chronic physical pain, including headaches; self-care; coordination/moving around; using hands; learning/understanding/paying attention; speaking/communicating/being understood; feeling anxious/depressed (children 18 months to 17 years). A 2-level dummy variable was created for each functional difficulty: some difficulty (a little or a lot) versus no difficulty. Prevalences for each of the 20 chronic conditions and 14 functional difficulties among AIAN CSHCN were determined. Stable estimates were compared to estimates for white CSHCN (Table 3). Finally, several indicators were developed to examine the burden of disease in AIAN versus white CSHCN. First, summary categories including the prevalences of CSHCN with 0, 1–2, and C3 chronic conditions and those with 0, 1–2, and C3 functional difficulties were developed for AIAN CSHCN and compared with the same estimates for white CSHCN (Table 4). The 14 functional difficulties were further grouped into additional summary categories characterizing CSHCN with a little or a lot of difficulty versus no difficulty with (1) emotional or behavioral factors, (2) participating in activities, and (3) one or more bodily functions. Lastly, a composite variable, the functional ability of the CSHCN, was created based on responses to two questions regarding the frequency and degree of the child’s limitations: (1) ‘‘How often has your child’s condition affected his/her ability to do things other children his/her age do?’’ (never/sometimes/usually/always) and (2) ‘‘Do your child’s health problems affect his/her ability to do things a great deal, some, or very little?’’ A dichotomous variable representing the impact of the child’s limitations was derived by collapsing the ‘‘sometimes,’’ ‘‘usually’’ and ‘‘always’’
Matern Child Health J Table 3 Crude and estimated frequency and prevalence of selected chronic conditions and functional difficulties among AIAN CSHCN compared to white CSHCN: National Survey of Children with Special Health Care Needs, 2009–2010 AIAN CSHCN
White CSHCN
Unweighted N
Weighted N
% (SE)
ADD/ADHD
198
28,544
31.0 (3.55)
Allergies Asthma
308 255
49,315 41,391
53.6 (4.21) 44.9 (4.00)
95
17,005
18.4 (3.44)
Unweighted N
Weighted N
% (SE)
8,294
2,076,603
31.6 (0.48)
13,104 8,194
3,179,989 1,952,832
48.3 (0.52) 29.7 (0.48)
2,888
757,222
11.5 (0.35) 15.9 (0.39)
Chronic conditionsa
Conduct disorder Developmental delay
157
24,671
26.7 (4.00)
4,299
1,047,771
Migraine headaches
88
14,426
15.6 (2.80)
2,498
642,751
9.8 (0.31)
Functional difficulties Hearing
67
7,564
8.2 (1.97)
1,462
357,673
5.4 (0.23)
Vision
119
16,592
18.0 (3.66)
3,628
901,202
13.7 (0.37)
Respiration
318
47,843
51.9 (4.12)
11,438
2,722,009
41.4 (0.51)
Digestion
141
15,999
17.4 (2.62)
4,913
1,229,374
18.7 (0.41)
48
5,893
6.4 (1.53)
1,443
343,672
210
30,939
33.5 (3.97)
7,284
1,815,151
Circulation Pain
5.2 (0.24) 27.6 (0.47)
Self-care
131
17,599
21.1 (3.65)
4,786
1,140,566
18.4 (0.41)
Gross motor
150
18,495
20.0 (2.94)
5,274
1,261,120
19.1 (0.40)
Fine motor
114
12,263
13.3 (2.33)
4,394
1,048,368
15.9 (0.37)
Learning Communication
375 259
52,305 38,650
57.2 (4.17) 42.3 (4.31)
13,511 7,764
3,310,117 1,929,281
50.9 (0.52) 29.7 (0.49)
Anxiety/depression
327
50,762
56.7 (4.02)
11,562
2,800,013
43.6 (0.52)
Behavior
333
48,707
54.3 (4.10)
9,795
2,484,110
38.6 (0.52)
Making/keeping friends
221
28,886
35.4 (4.00)
8,103
1,956,861
31.7 (0.50)
Bolded items are significantly different at a p value \ 0.05 and critical z of 1.96 in z tests for the difference of two proportions AIAN American Indian/Alaska Native, CSHCN children with special health care needs, SE standard error a
Of the 20 chronic conditions included in the survey the above list includes only estimates which are non-overlapping with the survey’s 14 functional difficulties and for which stable estimates could be obtained (i.e., with a coefficient of variation of \0.3)
responses on the first question with ‘‘a great deal’’ responses to the second question to represent the most impacted children. The ‘‘never’’ and ‘‘very little’’ responses to the first question and second questions represented the lower impact level. All estimates were statistically weighted to reflect population totals using sample weights. Chi square tests of independence were used in bivariate analysis (race 9 outcome) to determine significance followed by z test for the difference between two proportions for post hoc testing, Bonferroni adjusted for multiple tests when needed. The statistical analysis was conducted using SUDAAN 11.0 (Research Triangle Institute, Research Triangle Park, NC), which accounts for a complex sample design involving stratification, clustering, and multistage sampling. Various measures of multicollinearity among the independent variables were within acceptable limits (VIF \ 1.4, Tolerance [ 0.75, and r \ 0.48).
Results In the overall sample 7,320 AIAN children were screened and 1,051 were positively identified as CSHCN (Table 1). The crude prevalence of AIAN CSHCN among all US children was 13/10,000 (0.13 %). Among US CSHCN the prevalence was 84/10,000 (0.84 %) and among AIAN children 1,565/10,000 (15.7 %). The crude rate among AIAN was not significantly different from the rate for white CSHCN (16.3 %, SE = 0.15; z = -0.49, p = 0.6241). AIAN CSHCN had higher adjusted odds of being 6–17 years of age and male, residing in a metropolitan/urban area in Eastern or Northern Plains regions. Reliable prevalence estimates (i.e., based on[30 cases and CV \ 0.3) of %CSHCN among the AIAN child population could be determined for 8 states: Wyoming (25.2 %, SE = 5.7); Oklahoma (18.9 %, SE = 2.8); Montana (13.9 %, SE = 2.2); North Dakota (13.8 %, SE = 2.3);
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Matern Child Health J Table 4 Weighted estimates of the number of chronic conditions/ functional difficulties, type of difficulties, and degree of conditions/ difficulties among AIAN CSHCN compared to white CSHCN: National Survey of Children with Special Health Care Needs, 2009–2010 AIAN CSHCN
White CSHCN
Weighted %
Weighted %
SE
SE
Number of chronic health conditions reported from list of 20 different conditions queried in the survey 3 or more current conditions
38.8a
4.03
28.3a
0.48
a
1-2 current conditions
48.8
4.20
59.4a
0.52
0 conditions
12.4
3.21
12.2
0.35
Number of functional difficulties reported from list of 14 different difficulties queried in the survey 3 or more current functional difficulties 1-2 current functional difficulties 0 functional difficulties
70.0a
3.49
55.4a
0.51
25.0a
3.18
34.5a
0.48
5.0
2.23
10.2
0.33
Difficulty with one or more emotional or behavioral factors A little or a lot None
70.1b
3.69
57.7b
0.51
b
3.69
42.3b
0.51
29.9
Difficulty with one or more activities of participation A little or a lot
65.4
3.82
59.5
0.51
None
34.6
3.82
40.5
0.51
3.94 3.94
65.2 34.8
0.49 0.49
Difficulty with one or more body functions A little or a lot None
72.8 27.2
How much and how often child affected by condition(s) Sometimes/usually/always/a great deal
74.3b
3.58
62.6b
0.50
Never/very little
25.7b
3.58
37.4b
0.50
AIAN American Indian/Alaska Native, CSHCN children with special health care needs, SE standard error a
Significantly different based on Bonferroni corrected multiple post hoc tests of AI/AN compared to white CSHCN performed using p value \ 0.0167 and critical z of 2.4 in z tests for the difference of two proportions b Significantly different post hoc test of AIAN compared to white CSHCN performed using p value \ 0.05 and critical z of 1.96 in z tests for the difference of two proportions
Arizona (13.0 %, SE = 3.7); South Dakota (10.6 %, SE = 2.2); New Mexico (9.9 %, SE = 2.0); and Alaska (7.4 %, SE = 0.8). For AIAN CSHCN, 70 % of parents reported that their children needed or used some form of prescription medication with approximately, half of those (36 %) having medication needs only (Table 2). About 44 % of AIAN CSHCN needed or used elevated levels of service but, again, approximately half of them (23 %) had elevated service use needs exclusively with no other qualifiers. Over one third qualified as CSHCN based on needing or using
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mental health services (36 %). Fewer required some form of special therapy or qualified on the basis of functional limitations (21 and 23 %, respectively). Almost 20 % needed or used both elevated service levels and prescription medication. No significant differences were noted between AIAN and white CSHCN in the rates for any of the listed screener criteria (critical z = 1.96, p \ 0.05). Chronic conditions with reliable estimates and those that did not overlap with one or more of the 14 functional difficulties are listed in Table 3, along with statistical comparisons to the corresponding estimates for white CSHCN. The prevalences of 4 of the 6 conditions were significantly higher (critical z = 1.96, p \ 0.05) in AIAN CSHCN: conduct disorder (z = 2.00, p = 0.0455), migraine headaches (z = 2.06, p = 0.0394), developmental delay (z = 2.69, p = 0.0071), and asthma (z = 3.77, p = 0.0002), the latter two conditions being 11–15 percentage points greater among AIAN CSHCN compared to whites. With regard to differences in rates of functional difficulties measured by the survey, prevalences were significantly higher (critical z = 1.96, p \ 0.05) among AIAN CSHCN for difficulties related to respiration (z = 2.53, p = 0.0114), communication (z = 2.90, p = 0.0037), behavior problems (z = 3.80, p = 0.0001) and anxiety/depression (z = 3.23, p = 0.0012) compared to whites. When the number of conditions/difficulties were aggregated and compared to whites, AIAN CSHCN were significantly (Bonferroni adjusted critical z = 2.4, p \ 0.0167) more likely to have 3 or more chronic conditions (z = 2.59, p = 0.0096) and less likely to have 1-2 conditions (z = -2.50, p = 0.0124), but equally likely to have none of the chronic conditions queried (z = 0.06, p = 0.9522). A similar pattern was found for aggregated functional difficulties i.e., a significantly greater likelihood of AIAN CSHCN with 3 or more difficulties (z = 4.14, p \ 0.0001), lower likelihood of 1–2 difficulties (z = -2.95, p = 0.0032), but equal likelihood of having none of the difficulties queried (z = -2.31, p = 0.0209). When conditions/difficulties were grouped by type and compared across race (critical z = 1.96, p \ 0.05), AIAN CSHCN were more likely than white CSHCN to have some level of difficulty with emotional behavioral factors (z = 3.33, p = 0.0009), but were equally as likely to have difficulty with activities of participation and bodily functions (respectively, z = 1.53, p = 0.126 and z = 1.91, p = 0.0561). Overall, AIAN CSHCN were more consistently and more often greatly affected in their daily activities compared to white CSHCN (z = 3.24, p = 0.0012).
Discussion Current population studies on the prevalence of AIAN CSHCN or children with chronic disabling conditions and
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their health status are scarce and do not lend themselves to comparison with the estimates reported in the current analysis. For example, in the 2000 Census, disability among the AIAN children was determined only for the age category 5 to 15 years. The reported prevalence of disability was 7.7 %, the highest across all race/ethnicities, but based on a relatively narrow definition of disability (e.g., functional difficulties such as walking, learning, concentrating, dressing, bathing, working, etc.) [11]. Another source of information on the special health care needs of AIAN children is the Office of Special Education Programs’ Data Analysis System (DANS). DANS is a repository for all of the data mandated by section 618 of the Individuals with Disabilities Education Act (IDEA) to be collected annually from states. The data include all disabled children served in the US and territories in addition to the Bureau of Indian Education Schools. In the latest reported year (2007) the prevalence of disabilities among AIAN infants/toddlers, 3–5 year-olds, and 6–21 year-olds was 2.8, 8.6, and 13.9 % with respective risk ratios of 1.3, 1.4, and 1.7 relative to white children [3]. Among children 6–21 years of age, the AIAN children with disabilities were approximately twice as likely to be served for specific learning disabilities (49 %), speech/ language impairment (17 %), and emotional disturbances (8 %) compared to the white children. While estimates may not be comparable with those reported here due to fundamental differences in data sources, the areas of greatest concern bore some similarity to the AIAN chronic conditions/functional difficulties of greatest concern shown in Table 3. However, the assertion of overrepresentation of AIAN children in Special Education (i.e., relative to their proportion in the population) has been addressed and judged erroneous after adjusting for a host of confounding variables in a multilevel analysis [12]. In summary, little coherence can be found across point estimates of AIAN child disability at least in part due to variation in samples, definitions, and nature of the data sources. The NS-CSHCN provides national estimates based on a comprehensive definition of special health needs drawn from a representative sample of AIAN children across the age range from 0 to 17 years of age. This source indicates that the crude prevalence of SHCN among AIAN children is not significantly different from that among US white children; however, certain conditions can be said to predominate among AIAN CSHCN to a greater extent than is found for white CSHCN (Table 3). These chronic conditions/functional difficulties include: asthma, respiration; conduct disorder, behavior; anxiety/depression; developmental delay, communication; and migraine headaches. In addition, more AIAN CSHCN are affected to a greater extent than white CSHCN, both in terms of the number of co-morbidities and the limitations they impose.
Racial disparities (AIAN vs. white) can be found in the general population for select conditions characterized by similar disparities among CSHCN detailed in the current report, providing some support for these findings. For example, results aggregated across several years (2001–2005) have shown higher AIAN rates of lifetime and current asthma in addition to significant adjusted odds for having current asthma [13]. Other findings have indicated significantly higher rates or trends toward higher prevalences for asthma; headaches; respiratory allergies; emotional, developmental or behavioral difficulties needing treatment or counseling; and depression/ anxiety among AIAN 10–17 year-olds [14]. Finally, AIAN behavioral difficulties indicative of both internalizing (e.g., anxiety/depression) and externalizing (e.g., aggression or hostility) processes reportedly exceeded those of white adolescents [15]. Given the parity that exists in the overall prevalence of special health care needs among AIAN compared to white CSHCN, it is unclear what accounts for the greater impact on AIAN CSHCN regarding the number of comorbid conditions/difficulties and their limiting effects (Table 4). Apart from the detrimental socioeconomic circumstances in many AIAN communities, an additional contributing factor to the poorer outcomes of AIAN CSHCN may derive from several documented differences in health care access [16–18]. For example, multiple sources indicate that AIAN children under 18 years of age were more likely to be uninsured compared to white children [14, 16]. In addition to insurance coverage issues, AIAN children in general have been less likely to receive the services of a medical home [18]. The likelihood that AIAN children living in 7 states had a medical home was 27 percentage points lower than white children (after adjustment for age, insurance status, CSHCN status, household poverty level, highest level of household education) and AIAN CSHCN were less likely than AIAN non-CSHCN to have a medical home. A medical home is capable of reducing racial/ethnic disparity in unmet health needs and may help to reduce or prevent medical complexity [19]. We have shown that significantly more AIAN CSHCN are affected by special health care needs of greater complexity than their white counterparts, a situation which might be ameliorated with greater attention to care coordination within a medical home. With current changes in the health care coverage requirements (i.e., greater emphasis on care coordination) and the recent codification of the Indian Health Care Improvement Act (with emphasis on preventive maternal/infant care and behavioral health care), improvements can be expected in health care service to AIAN children in general and AIAN CSHCN specifically. Nevertheless, further investigation will be needed to determine the relationship between the medical complexity and coordinated health care access
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among AIAN CSHCN in the new health care environment. The strengths of this study are in the large, nationally representative sample in addition to data on co-morbidity and functionality. However, due to the remote location and lower than average telephone service among many AIAN families, sampling bias may reduce the representative nature of the AIAN child sample from which estimates were drawn [20]. Additional weaknesses include reliance on parent report for assigning children to diagnostic categories and evaluating functionality. These requirements may be difficult for parents in general, but also may be fundamentally different for AIAN parents compared to non-AIAN parents based on cultural differences in the perception of disability that may lead to under-reporting [21, 22]. However, the similarity in conditions/difficulties identified by AIAN survey parents as particularly problematic were similar to those identified by the Office of Special Education Programs, suggesting that parents’ judgments were not at odds with professionals providing remedial services. Estimates are based on relatively small numbers, but represent some of the largest existing representative samples of AIAN CSHCN. Because this study is limited to CSHCNs, estimates for the prevalence of chronic conditions and functional difficulties, and the characteristics of AIAN CSHCN may differ from children in the general AIAN population. Finally, the crosssectional nature of the data precludes any inferences about directionality of associations. Conclusion The current study of AIAN CSHCN chronic disease morbidity/co-morbidity and functional difficulties indicated that the prevalence of CSHCN among the AIAN child population was similar to that of CSHCN in the white population. However, significant differences were found for AIAN CSHCN in the form of greater disease burden based on the number of co-morbid conditions and their impact on the daily functioning of AIAN CSHCN. Significant differences were also noted in the prevalence of conditions such as conduct disorder, behavior problems, and anxiety/depression; migraine headaches; developmental delay and communication; and asthma/respiration. Care must be taken to ensure that AIAN CSHCN are provided the appropriate level of coordinated care (in a medical home) required to ameliorate the severity of their conditions and reduce the disease burden. Conflict of interest
None.
Ethical standard No IRB approval was required for this study, which is based on the secondary analysis of a public-use federal database.
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