Journal of Pediatric Psychology, Vol. 28, No. 3, 2003, pp. 175-183
© 2003 Society of Pediatric Psychology
Hemophilia Growth and Development Study: Caregiver Report of Youth and Family Adjustment to HIV Disease and Immunologic Compromise
1 Rice University, 2 University of Texas Medical School, Houston, 3 University of Iowa, College of Medicine, 4 Children's Hospital of Los Angeles, 5 University of California—San Diego Medical Center, 6 University of Texas Health Science Center, San Antonio, 7 University of Colorado, Boulder
All correspondence should be sent to Janice D. Bordeaux, Office of the Dean, George R. Brown School of Engineering, MS-364, Rice University, 6100 S. Main St., Houston, Texas. E-mail: jbordeau{at}rice.edu. Anne Kazak, PhD, ABPP, former Editor, served as accepting editor on this article.
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Abstract |
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Objective To assess differences in caregiver report of youth and family psychosocial adjustment associated with HIV infection and greater immune compromise in youths with hemophilia. Methods Caregivers of 162 boys with hemophilia 8 to 20 years old completed three youth and family questionnaires (Personality Inventory for Children, Revised [PIC-R]; Questionnaire on Resources and Stress [QRS]; Family Environment Scale). Results Caregivers of HIV positive (HIV+) youths reported greater health concerns, social withdrawal (PIC-R), physical and adaptive limitations associated with illness (QRS) in their sons, and more pessimism about their sons' future and negative attitudes about parenting (QRS). Caregivers of HIV+ youths with greater immune compromise reported greater concerns about their sons' health and greater pessimism about their futures, as well as lower levels of family integration and more limited family opportunities. Conclusions Results suggest caregivers perceive psychosocial problems in HIV+ youths with hemophilia and their families; some problems are specifically associated with greater immune compromise.
Key words: hemophilia; HIV; psychosocial; youth; family stress; immune compromise.
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Introduction |
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Youths with hemophilia and HIV infection form a unique cohort for studying the long-term developmental effects of HIV infection. Most were infected past infancy, and most lack the risk factors associated with vertical transmission, including lower socioeconomic status (SES) and maternal HIV infection. The Hemophilia Growth and Development Study (HGDS), a multicenter, multidisciplinary longitudinal study, was formed to follow the growth and development of these young people (Loveland et al., 1994
,
2000;
Nichols et al., 2000;
Stehbens et al., 1997). In
this article we report results from the Family Stress and Coping Study (FSCS),
an HGDS adjunct study on caregiver report of the psychosocial adjustment and
family functioning of 162 male youths with hemophilia ages 8 to 20 with and
without HIV infection.
The psychosocial adjustment of youths with HIV infection and their families
may be affected by the cognitive effects, social stigma, and life-threatening
nature of HIV infection (Kazak,
1997; Lewis, 2001;
Moss, Bose, Wolters, & Brouwers,
1998). Some studies suggest that youths with HIV exhibit more
anxiety disorders (Bussing & Burket,
1993) and depression (Burton,
Sarkis, Hill, Kemph, & Mehta, 1991). A longitudinal study
examining youth and parent report of adjustment in children and adolescents
with HIV (both vertical transmission and transfusion associated) found that
youths self-reported elevated depression and anxiety
(Bose, Moss, Brouwers, Pizzo, & Lorion,
1994; Moss et al.,
1998). Parents reported that their sons had problems with social
functioning, anxiety, and conduct that persisted at a 2-year follow up.
Bachanas, Kullgren, Schwartz, Lanier, et al.
(2001) found that parents
reported greater emotional and behavioral problems for youths with vertically
transmitted HIV infection than expected for their ages but no more adjustment
problems than a healthy comparison group of similar SES. This result could
reflect availability of psychosocial services for the group with HIV, or
underreporting of problems by parents. Similarly, Nichols et al.
(2000) reported that HGDS
youths with HIV and hemophilia had fewer externalizing behavior problems over
time, suggesting a decrease due to advancing illness, or a shift in parents'
focus from their son's behavior to his health problems. However, other
findings from the HGDS (Loveland et al.,
2000; Nichols et al.) indicate that significant declines in immune
functioning in youths with hemophilia and HIV are associated with declines in
cognitive and adaptive functioning, which may in turn affect emotional and
behavioral functioning. A large study of youths with hemophilia
(Drotar, Agle, Eckl, & Thompson,
1997) found no differences in psychosocial adjustment between
those with and without HIV, although it excluded youths with HIV-related
immune compromise and dementia, a subgroup likely to be more at risk. These
findings suggest that effects of chronic HIV on youth adjustment may differ by
associated risk factors, illness course, and availability of services.
The effects of HIV disease on youths should also be considered within the
context of family adjustment (Drotar,
1997). In addition to potential stressors associated with chronic
illness, such as increased financial burden, medical procedures, disruption of
normal activities, and less equitable relations with healthy siblings
(Hamlett, Pellegrini, & Katz,
1992; Holden, Chmielewski,
Nelson, Kager, & Foltz, 1997;
Kazak, 1989;
Lewis, Haiken, & Hoyt,
1994), HIV disease can be associated with fear of ostracism,
severe debilitation, premature death, and even deaths across generations
(Bose et al., 1994;
Kazak, 1997;
Mellins & Ehrhardt, 1994;
Sherwen & Boland, 1994;
Wiener, Vasquez, & Battles,
2001). Drotar et al.
(1997) found that compared to
mothers of uninfected youths with hemophilia, mothers of youths with both
hemophilia and HIV reported a greater impact of negative life events on
mothers' psychological distress, suggesting that HIV disease may increase the
family's vulnerability to stress. Although Bachanas, Kullgren, Schwartz,
McDaniel, et al. (2001) found
that caregivers of vertically infected youths did not differ in distress and
adjustment problems from caregivers of youths without HIV, this finding could
reflect the presence of additional risk factors (e.g., lower SES) whose
effects might outweigh effects of HIV.
The illness course of HIV, together with both stressors and resources for
coping, can affect both youth adjustment and family functioning. Chronic HIV
disease in young men with hemophilia may have a prolonged asymptomatic phase
that may be less stressful for youths and their families than the later stages
of HIV, which are marked by immune compromise
(Hilgartner et al., 1993;
Loveland et al., 1994).
Declines in cognitive and adaptive functioning associated with advancing
immune compromise and illness (Loveland et
al., 2000; Nichols et al.,
2000) could severely stress the family and reduce resources for
coping, leading to poorer outcomes. Moss et al.
(1998) found that, in children
with HIV, negative life events were associated with poorer psychosocial
outcomes, but that psychological resilience to stress had a stabilizing
effect. Five children with HIV who died within 1 year of baseline were found
to have more negative life events and less resilience to stress, as well as
greater progression of HIV disease. Taken together, these findings suggest
that psychosocial adjustment and family functioning in youths with hemophilia
may be adversely affected both by the presence of HIV infection and by the
lowered immune functioning that characterizes later stages of HIV disease.
The purpose of this study was to examine the relationship of youth and
family psychosocial functioning to both HIV serostatus and the extent of
immune compromise in male youths with hemophilia. This hemophilia cohort was
stratified into two groups based on youth HIV sero-status: a group with HIV
(HIV+; n = 86) and a group with no HIV (HIV-; n = 76). The
HIV+ group was further divided into subgroups based on degree of immune
dysfunction: (a) HIV+ with CD4+ t-cell counts (CD4 cells/mm3) <
200 (HIV+ group with lower immunity; n = 37), and (b) HIV+ with CD4+
t-cell counts 
200 (HIV+ group with higher immunity; n = 49).
Caregivers completed three standardized instruments measuring youth
psychosocial adjustment, family resources and stress, and family social
environment. Caregiver-report only was obtained for this study because of the
already high burden of testing placed on youth participants in the HGDS.
Concurrent measures of youths' HIV status, immune status, and intelligence and
family demographic characteristics were available from the HGDS; these
variables have been described earlier in detail
(Loveland et al., 1994;
Stehbens et al., 1997). They
are summarized in Table I.
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The primary research questions of this study were the following. Do youth and family psychosocial problems differ between families whose sons have both hemophilia and HIV infection and those whose sons have hemophilia alone? Are greater youth and family psychosocial problems associated with immune compromise in youths with hemophilia and HIV infection? Hypothesis 1: Families with sons who have both hemophilia and HIV infection will have greater psychosocial problems than families with sons who have hemophilia alone, as measured by youth psychological adjustment, family resources and stress, and family social environment. Hypothesis 2: Severe immune compromise in sons with hemophilia and HIV will be associated with greater psychosocial problems, as measured by youth psychological adjustment, family resources and stress, and family social environment.
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Method |
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Participants
FSCS participants were the caregivers or legal guardians of 162 youths with hemophilia ages 8 to 20 (M = 14.0 years, SD = 3.0). Respondent caregivers were almost all mothers, with 3% fathers and 4% other. All were the primary caregiver. Characteristics of the caregivers and youths are given in Table I, including youth age, full-scale IQ, and CD4 cell count, along with mean years of education for mothers and fathers.
Of 14 HGDS centers, 10 enrolled caregivers in the FSCS. Not all eligible
centers chose to participate, because of the time and training required for
professional staff. FSCS participants represented 63% of all HGDS caregivers
and 81% of HGDS caregivers at the participating FSCS sites. Eleven caregivers
(13.6%) had two sons enrolled; 10 of them had both sons in the HIV- group. The
eleventh caregiver's sons were both HIV+, and both had CD4 cell counts
200.
Family structure was coded in the HGDS baseline history. At enrollment, 78%
were two-parent families, 20.4% were single-mother-headed families, and the
remainder were single-father-headed or other (grandparent or other legal
guardian). SES was estimated using the Revised Socioeconomic Index of
Occupational Status (SEI), with possible scores from 13.8 to 90.4
(Stevens & Featherman,
1981; see Stehbens et al.,
1997, for discussion of methods). Families in the FSCS had an
average SEI of 34.2 (SD = 18.5) (middle class). On average,
respondent caregivers had completed high school (M = 12.6 years of
education, SD = 2.7). Neither the SEI nor the caregiver education
values differed significantly from those of the HGDS full sample
(Stehbens et al., 1997).
Study measures and HGDS medical and neuropsychological evaluations were
obtained between March 1992 and November 1993, on average about 10 years since
infection (see Loveland et al.,
1994,
2000, for discussion of how
time of infection was estimated). For all but six families, data were
collected at the third annual follow-up assessment past baseline, and for the
other six families, at the fourth annual follow-up. Following institutional
review board approval, caregivers gave informed consent. Informed
consent/assent by sons was required for caregiver participation.
FSCS youths were representative of boys with hemophilia in the United
States who were at risk for acquiring HIV disease through contaminated blood
clotting factor products before 1985: 53% were HIV+, 67% Caucasian, 17%
African American, and 16% Hispanic (Daar et
al., 2001). For the purpose of analysis, ethnic status was
classified into majority (Caucasian) and minority (African American, Hispanic,
Latino, and Chicano) groups. No families of Asian ethnicities volunteered to
enroll in the FSCS.
The HGDS sample (n = 333) was representative of the total
population of boys with moderate to severe hemophilia at the 14 HGDS centers
(Hilgartner et al., 1993).
Because the FSCS respondents were a self-selected subset of HGDS caregivers,
analyses were conducted using t tests and the chi-square statistic to
compare characteristics of the HGDS participants at baseline who were or were
not enrolled in the FSCS. FSCS youths were significantly younger (M =
14.0 vs. 15.6 years, SD = 2.97 and 3.40, respectively),
t(332) = 3.70, p < .0003, than those in the HGDS full
sample. This difference may reflect the fact that many older participants came
to HGDS study visits without their parents, reducing the opportunity for
participation in this study. Based on CD4+ t-cell counts, youths in the FSCS
were of similar immune status to youths whose caregivers did not participate
(22.8% FSCS vs. 22.2% HGDS with CD4+ cells/mm3 < 200). No
significant differences were found in type of hemophilia diagnosed (A or B),
ethnic status, youth intelligence (Wechsler Intelligence Scale for
Children-Revised or Wechsler Adult Intelligence Scale-Revised) or social
maturity (Vineland Adaptive Behavior Scales Composite Score).
Procedure
Study measures were selected based upon empirical evidence validating their
use in measuring youth psychosocial adjustment, family stress and resources,
and family environment.
Personality Inventory for Children-Revised (PIC-R;
Lachar, 1982;
Lachar & Kline,
1994). This empirically derived 280-item true/false
instrument (caregiver report) assesses psychosocial adjustment in preschool
through adolescent youths. Caregivers completed the PIC-R with reference to
their child who was enrolled in the FSCS. Twelve scales measure three
development dimensions (achievement, development, intelligence) and nine
adjustment dimensions (anxiety, depression, delinquency, family relations,
hyperactivity, psychosis, social skills, somatic concern, withdrawal). The
scales are interpreted through actuarial guidelines derived for T-score ranges
that vary by scale (Lachar & Gdowski,
1979).
Questionnaire on Resources and Stress-Long Form (QRS; Holroyd
1974,
1987). This 285-item
true/false caregiver questionnaire with 15 scales measures the impact of
childhood chronic illness or disabilities on stress in the caregiver, family,
and youths. Caregivers completed this scale with reference to the youths
enrolled in the FSCS and the family. Caregiver scales include Poor Health/Mood
(role discontent and sadness), Excess Time Demands, Negative Attitude (about
youths), Overprotective/Dependency (of youths), Lack of Social Support,
Overcommitment/Martyrdom, and Pessimism (about the youth's future). Family
stress scales are Lack of Family Integration, Financial Problems, and Limits
on Family Opportunity. Scales describing the youths with illness (Index Case
Problems) are Physical Incapacitation, Difficult Personality Characteristics,
Social Obtrusiveness, Limited Activities, and Occupational Limitations for
Index Case.
Family Environment Scale (FES;
Moos & Moos,
1981). This 90-item true/false questionnaire measures
three dimensions: family relationships (family cohesion, conflict, and
expressiveness), emphasis on types of personal growth (achievement
orientation, independence, intellectual-cultural orientation,
active-recreational orientation, and moral-religious emphasis), and family
system maintenance (organization and control). Caregivers completed this scale
with reference to the family as a whole.
Statistical Methods
Multivariate and univariate analyses of variance (MANOVA, ANOVA) were used
to evaluate the two hypothesis-relevant group comparisons (HIV+/HIV- and
greater/lesser immune compromise) across each of the three sets of scales
provided by the PIC-R, QRS, and FES. Because age differed significantly
between participants with and without HIV infection, age was entered as a
covariate in the parametric comparisons conducted by HIV status. Because of
the unique, nonreplicable nature of these data, an exploratory approach was
applied to data analysis. ANOVAs of individual scale dimensions were conducted
regardless of the statistical significance of the associated MANOVA. However,
caution was introduced into these analyses through the additional estimation
of the magnitude and pragmatic value of all statistically significant ANOVAs
by the application of two other procedures. The magnitude of statistically
significant univariate group differences was assessed through the calculation
of a standardized effect size (d), in which values reflect either
small (d = .20), medium (d = .50), or large (d =
.80) effects (Cohen, 1988). A
second procedure estimated the practical value of statistically significant
group differences through the classification of individual subjects.
Chi-square was applied to evaluate differences in proportions of clinically
elevated scale T-scores. For the PIC-R, clinical elevations were
defined empirically by Lachar and Gdowski
(1979) for individual scales,
as either T > 59, T > 69, or T > 79. For
the QRS and FES, for which comparable actuarial guidelines were not available,
a liberal criterion of one standard deviation from the normative mean was
used, as presented in the measure's manual (T > 59). Because the
HIV- group included 11 sibling pairs, we also repeated the parametric analyses
with these 22 participants removed. Results were the same as those obtained
from analyses of the full sample.
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Results |
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Comparison of HIV+ and HIV- Samples
The three sets of caregiver scales were first analyzed to evaluate the caregivers' perception of the effect of HIV on their sons with hemophilia. PIC-R scales differed significantly by HIV status when age was entered as a covariate (Wilks
= .852), F(12, 140) = 2.02, p =
.03. Significant (p < .05) ANOVAs were obtained for 5 of 12 PIC-R
substantive profile scale T-score values
(Table II). Youths with HIV
were described as having more evidence of compromised health (Somatic Concern)
and relative isolation (Withdrawal); these differences represented a medium
effect. Significant differences were also found for PIC-R scales reflecting
dysphoria (Depression), tension and worry (Anxiety), and poor peer relations
(Social Skills), although they represented only a small effect. When frequency
of clinically elevated scores was examined for these five scales, two PIC-R
scales differed significantly between groups, although neither was descriptive
of the majority of HIV+ youths (40% of HIV+ youths had an elevated Somatic
Concern scale, while only 24% had an elevated Withdrawal scale).
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QRS scales differed significantly by HIV status when age was entered as a
covariate (Wilks = .725), F(15, 138) = 3.14, p =
.0001. Significant (p < .05) ANOVAs were obtained for 9 of 15
scales (Table II). Of the seven
scales that describe the caregiver's adjustment, experience, and attitudes,
four differed significantly by HIV status and represented at least a medium
effect. Caregivers of HIV+ youths were more likely to describe themselves as
more distressed (Poor Health/Mood), fearful about their son's future
(Pessimism), concerned over the amount of care necessary for their son
(Overprotective/Dependency), and having negative parenting attitudes (Negative
Attitude) compared to caregivers of HIV- youths. Although the QRS manual
provides norms based only on a sample of 52 caregivers, scale scores
equivalent to T = 60 are given. Classification of QRS scale scores
based on these values resulted in a significantly higher proportion of
elevated values for the caregivers of HIV+ youths for two of these scales,
Pessimism (68%) and Negative Attitude (54%).
Two of three QRS scales that describe family status (Limits on Family Opportunity and Lack of Family Integration) differed significantly by HIV status, although these differences represented a small effect and resulted in no difference in proportion of cases classified within the clinical range. Three of five QRS scales describing study youths differed significantly by HIV status, and two of these obtained a group difference that represented a medium effect (Physical Incapacitation and Limited Activities). The QRS measure of poor personal adjustment (Difficult Personality Characteristics) also suggested that HIV infection represents additional threat to youth adjustment over hemophilia alone, although this scale obtained only a small effect and did not obtain a greater proportion of clinically elevated scores in HIV+ youths.
MANOVA of the FES did not generate a statistically significant effect for
HIV status when age was entered as a covariate (Wilks = .905),
F(10, 146) = 1.54, p = .13, although 1 of 10 scales
(Independence) obtained a statistically significant ANOVA by HIV status
(Table II). The families of
HIV+ sons were described as more likely to promote personal growth through an
emphasis on independence.
Comparison of HIV+ Samples of High and Low Immune Compromise
Comparable analyses of caregiver scales were conducted within the sample to
compare youths with substantial immune compromise (CD4 < 200, n =
33) with the remainder of the HIV+ sample (n = 47). MANOVA of the 12
PICR scales was not significant for the main effect of HIV+ immune compromise
(Wilks = .784), F(12, 67) = 1.53, p = .13; only one
scale obtained a statistically significant univariate group difference,
although the difference was considerable (d = .69). HIV+ youths with
significant immune compromise had higher average scores on Somatic Concern
than HIV+ youths with an adequate CD4 count. When individual youths were
classified within the clinical range, 61% of the more immune compromised
youths had an elevated Somatic Concern value compared to only 26% of the
remaining youths (Table
III).
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The QRS statistically differed by degree of HIV immune compromise (Wilks
= .677), F(15, 65) = 2.07, p = .02, although only 3
of the 15 QRS scales obtained a significant univariate group effect; each of
these differences represented a medium effect. As expected, the majority (82%)
of caregivers were pessimistic about the future for HIV+ sons with CD4 values
< 200 (Pessimism). Two QRS measures of family environment also differed by
presence of immune compromise (Lack of Family Integration and Limits on Family
Opportunity), representing a poorer family adjustment with deteriorating
immune status in the HIV+ son.
MANOVA of the FES did not result in a statistically significant effect of
HIV+ immune compromise (n = 34, CD4 < 200 vs. n = 47, CD4
200, Wilks = .863), F(10, 72) = 1.14, p = .34.
Similarly, all 10 of the subsequent univariate FES comparisons were not
significant.
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Discussion |
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We hypothesized that caregivers of youths with hemophilia and HIV would report greater psychosocial problems for both the son and family compared to caregivers of sons with hemophilia alone. The groups differed on measures of youth psychological adjustment, particularly health concerns and social withdrawal (PIC-R) and adaptive limitations associated with illness (QRS). They also differed on measures of the caregiver's adjustment to the youth's illness, particularly pessimism about the son's future and negative attitudes about parenting (QRS). The groups did not differ on most aspects of family social environment. These results support previous studies that have suggested that youths with both hemophilia and HIV and their families are at greater risk for psychosocial problems than those youths and their families with hemophilia alone (Drotar et al., 1997
; Nichols et al.,
2000). Our results also clearly indicate concerns by parents of
HIV+ youths regarding effects of advancing illness associated with HIV, beyond
those concerns related to hemophilia itself. Greater immune compromise (CD4 cells/mm3 < 200) in sons with HIV was hypothesized to be associated with differences in youth adjustment and family stress and coping resources. Caregivers of HIV+ youths with greater immune compromise did report significantly greater concerns about health, and since severe immune deficiency is associated with a late stage of illness, it is not surprising that 82% of caregivers with immune compromised sons also expressed greater pessimism about their sons' future. The fact that a greater proportion of these same caregivers reported lower levels of family integration may suggest that stress related to the son's advancing illness may adversely affect relationships within the family. These results indicate that families and youths were aware of health risks and that their concerns were realistically linked to the presence and progress of HIV disease.
The lack of differences in family environment found between groups with and
without HIV and with and without significant immune compromise suggests that
differences in caregiver perceptions of their sons were probably not due to
differences in family relationships, organization, or activities they value.
Rather, these findings are consistent with research that suggests that
negative life events and advancing HIV illness are important determinants of
family stress and psychosocial adjustment in youths with HIV
(Drotar et al., 1997). These
findings also emphasize that future studies must assess both healthy and
medically compromised youth to capture the psychosocial impact of the full HIV
disease spectrum.
Conclusions from this study are limited by the fact that results are based
only on caregiver report. It is reasonable to expect that youths with HIV
disease might view their own behavior and emotional state, as well as family
functioning, somewhat differently than would their parents
(Drotar et al., 1996.) Thus,
our findings reflect caregivers' perception of the extent of youth and family
problems associated with HIV infection and advancing disease course. Because
of their day-to-day role in managing the medical care of their sons with
hemophilia, these caregivers, largely mothers, may have a perspective on youth
and family problems that differs both from that of the youths themselves and
from that of fathers. Also, some research suggests that caregivers who are
themselves distressed may be more likely to report distress or other
psychosocial problems in their sons with chronic illness
(Bachanas, Kullgren, Schwartz, McDaniel, et
al., 2001; Chilcoat &
Breslau, 1997; Renouf &
Kovacs, 1994.) Thus, future studies should include both
self-report and caregiver-report measures to address the perceptions of youths
with HIV of their own adjustment and family functioning, as well as
differences between self- and parent-report.
These findings indicate that caregivers' perceptions of the psychosocial
functioning of youths with HIV and their families, including the functioning
of the caregivers themselves, are related to the youth's degree of illness.
Coping strategies focused on problem solving rather than emotions have been
associated with better psychosocial outcome among youths with HIV and their
caregivers (Bachanas, Kullgren, Schwartz,
Lanier, et al., 2001; Bachanas,
Kullgren, Schwartz, McDaniel, et al., 2001). Thus, psychosocial
interventions to improve coping with HIV illness and the negative events
associated with disease progress may be a critical need for families of HIV+
youths with hemophilia.
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Appendix |
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TopAbstractIntroductionMethodResultsDiscussionAppendixReferences |
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HGDS Center Directors, Study Coordinators or Committee Chairs
Children's Hospital Los Angeles: E. Gomperts, MD, W. Y. Wong, MD, F. Kaufman, MD, M. Nelson, MD, S. Pearson, RN; University of Texas Medical School, Houston: W. K. Hoots, MD, K. Loveland, PhD, M. Cantini, RN; The National Institutes of Health, National Institute of Child Health and Human Development: A. Willoughby, MD, MPH, R. Nugent, PhD; New England Research Institutes, Inc.: S. McKinlay, PhD; Rho, Inc.: S. Donfield, PhD; University of Iowa Hospitals and Clinics: C. T. Kisker, MD, J. Stehbens, PhD, S. O'Conner, J. McKillip, RN; Tulane University Medical Center: P. Sirois, PhD; Children's Hospital of Oklahoma: C. Sexauer, MD, H. Huszti, PhD, F. Kiplinger, S. Hawk, PA-C.; University of Texas Health Science Center, San Antonio: J. Mangos, MD, A. Scott, PhD, R. Davis, RN; Milton S. Hershey Medical Center: M. E. Eyster, MD, D. Ungar, MD, S. Neagley, RN, MA; University of California-San Diego Medical Center: G. Davignon, MD, P. Mollen, RN; Kansas City School of Medicine, Children's Mercy Hospital: B. Wicklund, MD, A. Mehrhof, RN, MSN.
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Acknowledgments |
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We are grateful to the HGDS families who contributed their invaluable time and effort to this project. We also thank Sharyne Donfield, Margaret Maeder, and the New England Research Institute for their outstanding administrative support, without which the study could not have been accomplished, and Charles Contant, Jr., for his help in data management and analysis. This work was supported by the Bureau of Maternal and Child Health and Resources Development (MCJ-060570), the NICHD (NO1-HD-4-3200), the Centers for Disease Control and Prevention, and NIMH. Additional support was provided by grants from the National Center for Research Resources of the NIH to the New York Hospital Cornell Medical Clinical Research Center (MO1-RR06020), the Mount Sinai General Clinical Research Center, New York (MO1-RR00071), the University of Iowa Clinical Research Center (MO1-RR00059), and the University of Texas Health Science Center, Houston (MO1-RR02558).
Received January 3, 2001; revision received October 10, 2001; revision received February 6, 2002; accepted June 3, 2002
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