IMPACT ON QUALITY OF LIFE IN CHILDREN
WITH MYELOMENINGOCELE AND BURDEN
ON THEIR CAREGIVERS
Rodolfo Silva
1
Kós ,
Carlos Arturo Levi
2
D’Ancona
1Physiotherapist,
Master Degree in Sciences of Surgery - UNICAMP
2Urologist, Professor of Urology - UNICAMP
AIMS OF STUDY
The aim of this study is to evaluate the quality of life (QoL) of
children with myelomeningocele (MMC) and overload on their
caregivers.
STUDY DESIGN, MATERIALS AND METHODS
Descriptive cross-sectional study that was approved by the
Research Ethics Committee. It included children with MMC and the
caregiver to participate in the study, providing a prior explanation of
the importance of all procedures. Thus, parents signed an informed
consent and data collection was initiated.
The data to characterize the sample was collected in an
evaluation form. For the assessment of Quality of Life of the children
with MMC, AUQUEI and Qualiveen questionnaires was applied. The
caregiver burden was also assessed by structured interview named
Burden Interview. All the questionnaires were translated and validated
for the Portuguese language. The register of the amount of urine
leakage was measured by the 24 hours’ pad test and urinary frequency
measured over the three-day voiding diary. Two days were required
for procedures to be performed.
On the first day of data collection, the form to characterize the
sample were applied, the Burden Interview with caregivers, as well as
the guidance about the home procedures of the three-day voiding
diary and the pad test. The second day of evaluation was established
by Qualiveen and AUQUEI answered by the children, in addition to
collecting the results of the voiding diary and pad test related material.
RESULTS
The sample was of 24 children with MMC, they were divided
into 2 groups, group 1 (G1) children treated by clean intermittent
catheterization (CIC), corresponding to 7 patients and group 2 (G2)
children who used diapers, totalizing 17 children, with mean age of
11,28 years old in G1 and 7,64 in G2. There was no difference in
prevalence between the groups, considered homogeneous among
them. Caregivers are mostly the mothers of the children themselves.
The QoL in general aspects measured by the AUQUEI showed
no significant difference between groups, as well as the results of
Qualiveen in dimensions of Specific Impact of Urinary Problems with
specific items related to the impact of urinary dysfunction and also in
the dimension of Quality of Life, in general aspects and can then say
that there is no difference between the two groups about the child's
perception regarding urinary symptoms and the QoL in general aspects
(Table 1).
The caregiver burden was assessed using the Burden Interview
which shown that caregivers of G1 presented higher score compared
to G2, demonstrating a difference between groups (p=0,0005) and
classifying the group who performs CIC (G1) as more burdened about
caring the child with MMC in several aspects (Figure 1).
Table 1. Values of AUQUEI, Qualiveen and p value
between groups
G1
G2
p value
AUQUEI
46,42±3,28 49,76±2,10 0,763
Qualiveen
0,424
1,42±0,32
1,56±0,20
SIUP
Qualiveen
0,882
-0,01±0,22
0,10±0,14
QoL
Subtitle: AUQUEI: Autoquestionnaire Qualité De
Vie Enfant Imagé, SIUP: Specific Impact of Urinary
Problems, QoL: Quality of Life
45
40
44,71
35
30
25
20
22,94
G1
G2
15
10
5
0
Figure 1. Results of Burden Interview
between Groups
The pad test showed a mean of 304,71 grams (g) of loss in G1
and 428,58g in G2, with no difference in urine loss (p=0,142). In
voiding diary, there was no expressive difference with regard to fluid
intake between groups. However, there was significant difference
between the use of pads (p=0,003), demonstrating that the G2 uses
more pads in the period than the group that performs clean
intermittent catheterization.
INTERPRETATION OF RESULTS
The mobility factor has been pointed as a determining factor in
influencing the QoL of these patients, and hydrocephalus, orthopedic
deformities and neurogenic bladder has lower impact, corroborating
with the results in the present study because the urological treatment
was different between the groups, and no difference were noted
about the QoL.
The caregivers are affected more strongly than children
themselves, because they spend more time for procedures such as
administering medications continuous or prophylactic, performing the
CIC and preventing skin lesions, use of orthosis, among others.
CONCLUDING MESSAGE
This study demonstrates that urinary incontinence doesn’t
directly affect the quality of life of the children with
myelomeningocele, but with the right treatment of all dysfunctions,
the child could be better prepared for the adolescence and adult life.
The CIC is a factor of overwork for caregivers, promoting negative
impact on their life and maybe that is the reason for the low
adherence of this method.
References:
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Santos EM. Qualidade de vida relacionada à saúde em crianças e adolescentes com mielomeningocele. Uberlândia, 2009. Dissertação (Mestrado). Faculdade de Medicina da Universidade Federal de Uberlândia.
Gaiva MAM, Corrêa ER, Santo EARE. Perfil clínico-epidemiológico de crianças e adolescentes que vivem e convivem com espinha bífida. Rev Bras Crescimento Desenvolvimento Hum. 2011; 21(1):99-110.
Gaiva MAM, Neves AQ, Siqueira FMG. O cuidado da criança com espinha bífida pela família no domicílio. Esc Anna Nery Rev Enferm. 2009. out-dez; 13(4): 717-25.
Costa RCV, Guiotoku ETS, Kravchychyn H, Rocha J, Carmo MM, Castro, YPG. A percepção emocional do cuidador familiar frente à técnica do cateterismo intermitente limpo na mielomeningocele. Acta Fisiatr.
2012;19 (4):222-7.
Key-words: Myelomeningocele, Quality of Life, Urinary Bladder.