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http://dx.doi.org/10.1016/j.jpurol.2014.11.017
1477-5131/ª 2015 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.
75.e2 A.T. Kabra et al.
similar to HADS has been confirmed to have good psycho- 5.5 (interquartile range [IQR]: 1.75e8.75) for anxiety and
metric properties [16]. The estimated completion time for 1.5 (IQR: 0e4.25) for depression (Table 1), both within the
the HADS or the CES-D questionnaire was 5 min [16,17]. normal range (<8/21). Individual abnormal HADS scores
(8/21) were seen in six out of 22 (27%) for anxiety and one
out of 22 (5%) for depression. The prevalence of abnormal
Results scores for A/D was not different between SB versus other
causes of NB, nor were any other factors investigated
Baseline characteristics associated with abnormal scores. (p Z 1.0).
We had 38 pediatric patients with NB: 26 had SB and 12 had Anxiety and depression among caregivers
NB of other etiologies, specifically, lipomyelomeningocele
(4), VATER (2), spinal ischemia, caudal regression, neuro-
Forty-seven caregivers completed HADS and CES-D. They
blastoma, viral paraplegia, and undiagnosed neurological
had a median HADS score of 7 (IQR: 4e11) for anxiety and 4
abnormalities (2). Twenty-two out of 38 patients were
(IQR: 1e7) for depression (Table 2), again within the normal
considered adolescents (10e19 years of age) and eligible
range. Individual abnormal HADS scores were seen in 23 out
for HADS. The remaining 16 patients were younger than 10
of 47 (49%) for anxiety and 10 out of 47 (21%) for depres-
years of age and not eligible to take HADS. They were
sion. Abnormal CES-D scores (>15) were seen in 15 out of 47
therefore excluded from A/D evaluation. Regardless of a
(32%). The median CES-D scores were 8 (IQR: 3e19).
patient’s age, all caregivers (n Z 47) were eligible to take
Nine of the 38 patients had two caregivers who completed
both CES-D and HADS.
HADS and CES-D. They were included in the patient clinical
characteristic data twice (n Z 47) and were assumed to be
Depression among adolescents independent responses. The percentage of abnormal scores
for HADS or CES-D for caregivers of patient’s with SB versus
Twenty-two adolescents completed HADS (7 males, 15 fe- those with other causes of NB was not different (HADS-A,
males, 1 missing data). They had a median HADS score of p Z 0.53, HADS-D, p Z 1.0, CES-D, p Z 1.0). The percentage
of abnormal scores for HADS and CES-D was higher when caregivers had anxiety, and the prevalence was even higher
patients had Medicaid (HADS-A, 36% no vs. 91% yes, among caregivers than the adolescents themselves. This is
p Z 0.002; CES-D, 22% no vs. 64% yes, p Z 0.02). Continence similar to that seen in caregivers of asthmatic children [8].
was associated with a higher percentage of abnormal scores We also found that nearly a third of the caregivers in our
for A/D among caregivers (HADS-A, 71% no vs. 36% yes, study had depression, much higher than the adolescents.
p Z 0.03; CES-D, 47% no vs. 18% yes, p Z 0.05). This is consistent with the rates of A/D among caregivers of
pediatric patients with other chronic illnesses [8e10,25].
For example, among caregivers of children with other
Discussion chronic diseases, depressive symptoms were found in 39%
of male and 33% of female caregivers of asthmatic children
In this preliminary screening study, we found considerable and 14% of male and 50% of female caregivers of children
anxiety in adolescents with NB and both A and D in care- with chronic renal disease [9]. Previous literature in chil-
givers. When screening using two validated surveys, ado- dren with neurological problems is conflicting. In 132 par-
lescents with NB had median scores for A/D that were ents of pediatric patients with neural tube defects, a
normal; yet 27% of these patients exhibited scores for relationship between depression and chronic sorrow was
anxiety that are outwith the normal range. For the care- demonstrated [10]. In another study, family functioning and
givers, the median scores were also normal; yet 49% and psychological status of parents did not seem to be affected
32% had scores for A/D, respectively, that were abnormal. by the disability level of SB in children [11]. In contrast, life
SB among pediatric patients has been shown to result in stress scores were found to be similar among caregivers of
alterations in daily functioning and to increase dependency patients with SB and matched controls [8]. Parental hope
on adult care, factors that are associated with altered self- was associated with better QoL in SB [12], and depression
concept, psychological distress, including A/D [1,18e20]. was shown to negatively affect medical care and patient
Our findings underscore such results from previous studies. outcomes, further suggesting that our findings warrant
Although previous studies have reported the prevalence attention by healthcare providers [3].
of depression in SB and urinary incontinence [2,21], we In addition, a child or adolescent’s disability will
report the median and individual scores for depression in certainly affect family dynamics and will have a significant
adolescents with NB as normal (only 1 case had depression). impact on family functioning [11,27,28]. This underscores
This is in contrast to a study of adolescents with SB where that A/D in parents can deleteriously impact children and
self-reported A/D symptom scores above the clinical cut-off vice versa [25,29]. Maternal A/D investigated at various
values were reported in 41% and 31% of the study popula- intervals postpartum demonstrated that the ability to fulfill
tion, with 53% of youths reporting symptoms of both A and D the roles of parenting are impaired due to impaired in-
[2]. Pain was found to be a risk factor for both A and D. We teractions, decreased gratification, and lower feelings of
rarely perceive pain to be an issue for children with NB [22]. self-efficacy [28] can put children at higher risk for devel-
Among incontinent adults, the odds of depression were opmental delay, social difficulties, and internalizing and
twofold higher than continent controls, and depression was externalizing problems [7,25]. Pediatric patients of
attributed to altered serotonin function [23]. Our results depressed parents can show more impaired functioning in
are also quite different from other chronic conditions. For work and family environments than those of non-depressed
example, depression has been reported to be more parents [29]. The implications of these findings are impor-
commonly present in adolescent patients with asthma, tant; one can imagine how challenging it would be for an
epilepsy, diabetes, end-stage renal disease, cystic fibrosis, anxious parent to help an anxious child. Since these pedi-
and sickle cell disease [1,24]. Possible explanations for the atric patients will likely undergo numerous interventions,
lack of depression in SB/NB adolescents may relate to the mental health professionals should look for ways to assist
limited effects the condition has on self-image [25], the high-risk families. Psychosocial interventions in these
support provided by the local SB association, or the small families may well be of benefit.
sample size of the pilot study. In our study, we surprisingly found caregivers to have a
In our study, the percentage of adolescent patients with lower percentage of depression in patients with inconti-
abnormal anxiety was 27%. This finding is similar to the high nence. Although we have no data on the cause of this
prevalence that has been reported for adults, 18e25 years of finding in this preliminary study, this may be related to a
age with SB (23e31%) [2]. In comparison, in a nationally caregiver’s ability to adapt to the demands of the situation
representative survey of the US general population, the 12- in chronic illness or, perhaps, lower expectations. Care-
month prevalence rate of mood disorders was reported to be givers of pediatric patients with Medicaid had higher per-
3.7% in youth [24] and 6.6% in adults [26]. The presence of centages of A/D by HADS-A and CES-D. Medicaid in the
anxiety in our study sample is striking and suggests physicians United States is a government funded health insurance
should have a heightened awareness of the potential for program for children, adults, low-income families, and
excessive anxiety in these patients, as physicians generally those with disabilities. Higher percentages of A/D are not
perform many medical procedures in these patients. In the surprising in this population as they are likely to have many
urology setting, these children undergo many ultrasounds other poverty-related stresses (e.g., housing and food) and
and urodynamic studies. Child-life services and other support are consistent with previous studies. For example, higher
systems may be valuable to help prevent/reduce anxiety, dysfunction was found in the family functioning of SB pa-
even for these seemingly innocuous procedures. tients of lower socioeconomic status [11]. Similarly, in a
Similar to adolescents, caregivers also had issues. study of pediatric patients with sickle-cell disease and
Although median scores were normal, nearly half of the Medicaid, socio-demographic strata, family’s poverty level,
75.e6 A.T. Kabra et al.
and rural/urban environment were factors that contributed [2] Bellin MH, Zabel TA, Dicianno BE, Levey E, Garver K, Linroth R,
to higher rates of depression [30]. et al. Correlates of depressive and anxiety symptoms in young
There are several limitations to our study. First and adults with spina bifida. J Pediatr Psychol 2010;35:778e89.
foremost, even though our study was designed as a pre- [3] Woltmann E, Grogan-Kaylor A, Perron B, Georges H,
Kilbourne AM, Bauer MS. Comparative effectiveness of
liminary screening investigation, our numbers are small.
collaborative chronic care models for mental health condi-
Second, the cross-sectional nature of the study can only tions across primary, specialty, and behavioral health care
provide associations, and causal relationship for A/D be- settings: systematic review and meta-analysis. Am J Psychia-
tween NB patients and their caregivers cannot be inferred. try 2012;169(8):790e804.
Third, we had no measures of intelligence quotient (IQ) and [4] Joseph DB. Current approaches to the urologic care of chil-
could not study the impact of IQ on A/D. Fourth, we are dren with spina bifida. Curr Urol Rep 2008;9:151e7.
aware that only a small proportion of families initially [5] DiMatteo MR, Lepper HS, Croghan TW. Depression is a risk
invited by post returned the completed consent. The factor for noncompliance with medical treatment: meta-
remaining families included were subsequently asked at analysis of the effects of anxiety and depression on patient
outpatient clinic visits to complete the consent form. As a adherence. Arch Intern Med 2000;160:2101e7.
[6] Bauer SB, Joseph DB. Management of the obstructed urinary
result, this may select only those families coming for care.
tract associated with neurogenic bladder dysfunction. Urol
It is conceivable that those having even worse A/D may not Clin North Am 1990;17:395e406.
even attend outpatient clinics or respond to mail. We [7] Downey G, Coyne JC. Children of depressed parents: an
cannot test this possibility in our study but would point out, integrative review. Psychol Bull 1990;108:50e76.
if so, this would make our findings even stronger. Fifth, our [8] Ong LC, Norshireen NA, Chandran V. A comparison of
study does not provide qualitative analysis of the families parenting stress between mothers of children with spina bifida
studied. Although specific factors that cause A/D in care- and able-bodied controls. Dev Neurorehabil 2011;14:22e8.
givers would be clinically important to identify, they were [9] Szabo A, Mezei G, Kovari E, Cserhati E. Depressive symptoms
outside the scope of this study. Despite these limitations, amongst asthmatic children’s caregivers. Pediatr Allergy
the prevalence of anxiety in adolescents and in the care- Immunol 2010;21(Pt 2):e667e773.
[10] Hobdell E. Chronic sorrow and depression in parents of children
givers is striking. Certainly our data highlight that clinicians
with neural tube defects. J Neurosci Nurs 2004;36:82e8. 94.
should look for A/D more aggressively in pediatric patients [11] Holmbeck GN, Westhoven VC, Phillips WS, Bowers R, Gruse C,
with NB dysfunction and in their caregivers. Nikolopoulos T, et al. A multimethod, multi-informant, and
multidimensional perspective on psychosocial adjustment in
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Conclusion 71:782e96.
[12] Kirpalani HM, Parkin PC, Willan AR, Fehlings DL,
Our study found preliminary evidence for a high risk of Rosenbaum PL, King D, et al. Quality of life in spina bifida:
anxiety in adolescents with NB dysfunction and for A/D in Importance of parental hope. Arch Dis Child 2000;83:293e7.
the caregivers of pediatric patients with NB. These results [13] Bjelland I, Dahl AA, Haug TT, Neckelmann D. The validity of
suggest routine screening for A/D in pediatric patients with the Hospital Anxiety and Depression Scale. An updated liter-
SB and NB and in their families will most likely yield high ature review. J Psychosom Res 2002;52:69e77.
[14] Brennan C, Worrall-Davies A, McMillan D, Gilbody S, House A.
rates of abnormality. Psychosocial therapeutic in-
The Hospital Anxiety and Depression Scale: a diagnostic meta-
terventions may be beneficial for such families. Future analysis of case-finding ability. J Psychosom Res 2010;69:
studies investigating reasons for A/D in families would be 371e8.
beneficial. [15] White D, Leach C, Sims R, Atkinson M, Cottrell D. Validation of
the Hospital Anxiety and Depression Scale for use with ado-
lescents. Br J Psychiatry 1999;175:452e4.
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(HADS) as a screening instrument in a depressed adolescent
None. and young adult population. Int J Adolesc Med Health 1995;8:
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[17] McCauley SR, Pedroza C, Brown SA, Boake C, Levin HS,
Funding Goodman HS, et al. Confirmatory factor structure of the Cen-
ter for Epidemiologic Studies-Depression scale (CES-D) in mild-
None. to-moderate traumatic brain injury. Brain Inj 2006;20:519e27.
[18] Landry SH, Robinson SS, Copeland D, Garner PW. Goal-
directed behavior and perception of self-competence in
Acknowledgments children with spina bifida. J Pediatr Psychol 1993;18:389e96.
[19] Orth U, Robins RW, Trzesniewski KH, Maes J, Schmitt M. Low
self-esteem is a risk factor for depressive symptoms from young
We thank Preeti Zanwar, PhD, MPH, MS, for her assistance adulthood to old age. J Abnorm Psychol 2009;118:472e8.
with revising and proofreading the manuscript. [20] Moore C, Kogan BA, Parekh A. Impact of urinary incontinence
on self-concept in children with spina bifida. J Urol 2004;171:
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