Sociodemographic Factors and Quality of Life in Children and Adolescents Under Cancer Treatment
Sociodemographic Factors and Quality of Life in Children and Adolescents Under Cancer Treatment
Sociodemographic Factors and Quality of Life in Children and Adolescents Under Cancer Treatment
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Keywords
Quality of Life, Sociodemographic Factors, Psycho-Oncology, Pediatrics
1. Introduction
The survival rate of children and adolescents with cancer has increased because
of the early detention and the innovation in the existing treatments (Abu-Saad
Huijer, Sagherian, & Tamim, 2013; Litzelman, Catrine, Gangnon, & Witt, 2011;
Pek et al., 2010). However, it has not been possible to eliminate symptoms occa-
sioned by the disease or its treatment, which are physical (pain and nausea), psy-
chological (sadness, preoccupations, self-esteem diminution, fear) and social
(modifications in school, family and friends environment), which affects directly
in the quality of life (Abu-Saad Huijer et al., 2013; Litzelman et al., 2011).
Quality of life (QOF) is a subjective concept defined as the feeling of socioe-
motional and physical wellbeing, including the ability to participate in everyday
activities according to age (Chaudhry & Siddiqui, 2012; Guadarrama-Guadar-
rama, Hernández-Navor, Veytia López, Márquez-Mendoza, & Carrillo-Arellano,
2015). In children and adolescents with cancer, QOL develops as a personal ex-
perience, influenced by its sickness and the institutional environments in which
they spend their daily life (Chaudhry & Siddiqui, 2012). The sickness stigma and
the aggressiveness of the received medical treatments are factors that affect the
patients’ development, generating alterations at physical and psychological levels
(Cadiz, Urzua, & Campbell, 2011). Considering this, it is necessary to under-
stand that QOL and health are aspects strongly related, because sickness has as
important impact on the individual wellbeing and its ability to function in phys-
ical, emotional and social areas in the daily life (Chaudhry & Siddiqui, 2012).
As the World Health Organization suggested, it is important to evaluate the
QOF in children and adolescents with cancer, in order to be able to intervene
opportunely in areas affected by a cancer diagnosis (Vlachioti et al., 2016). It is
necessary to increase the studies about the effectivity of socioemotional inter-
ventions in children and adolescents with cancer and their families (Kazak,
2005), considering that there are only few scientific papers about it (Fedele et al.,
2013; Marsland et al., 2013; Mehranfar, Younesi, & Banihashem, 2012; Wake-
field et al., 2015). In our context, despite the relevance of this variable, the re-
search about QOF in pediatric oncology is scarce (Arias-Gómez et al., 1996; Cas-
tillo-Martínez, Juárez-Villegas, Palomo-Colli, Medina-Sansón, & Zapata-Tarrés,
2009) increasing the exiting challenges.
Several research have identified some variables that influence the QOL of
children and adolescents with cancer, such as age, gender, diagnosis and type of
treatment, referring that the first six months after the diagnosis represent a pe-
riod of major affectations (Vlachioti et al., 2016). Despite the impact that a can-
cer diagnosis can have for a pediatric patient, it is difficult to develop research
with this population, because they are young and feel physically sick, not want-
ing to participate in studies, conditioning the information gathering to other
sources, such as the parents (Llantá-AbreuI, Grau-AbaloII, & VeaIII, 2014).
However, QOL is subjective, and although the indirect information gathering is
common, it is only complementary to the children or adolescent perspective
(Vélez & García García, 2012), and sometimes even contradictory (Abu-Saad
Huijer et al., 2013; Chaudhry & Siddiqui, 2012).
This research aimed to determine the association among quality of life and
age, gender and school level variables in a children and adolescents with cancer
and their families, looking to contribute to the existing knowledge about quality
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2. Research Settings
The Instituto Mexicano del Seguro Social (Mexican Social Security Institute, or
IMSS), is one of the main public institutions in Mexico in charge of providing
medical attention at a primary, secondary and tertiary levels. The medical ser-
vices are provided to adults working in the formal economy and their families.
This research was conduct in the Pediatric Hospital of the National West
Medical Center. The facility provides third level medical services to the pediatric
population of eleven states of western Mexico. In the oncology department, the
hospital offers medical consults and treatments to children and adolescents,
having external patients and others admitted to the hospital.
3. Methodology
3.1. Participants
We included 59 children and adolescents with cancer diagnosis, whose ages were
between 4 and 16 years old. In addition, the patients’ parents also participated in
the research in order to be able to stablish comparisons between their percep-
tions. The pediatric participants were receiving oncological treatment at a public
hospital in Mexico. We selected the participants with a convenience sampling,
using a consecutive case series for the recruitment of the children and adoles-
cents. The pediatric patients in a control stage were excluded, considering their
treatment has finished.
3.2. Instruments
A data collection page was developed to gather information about the patient
gender, age, age of diagnosis and school level. The oncological patients and its
parents answered the KINDL questionnaire, developed in Germany for the
evaluation of QOL in children and adolescents, for general population and hos-
pital settings. The children from 4 to 7 years answered the Kiddy-KINDL, the
group from 8 to 12 the Kid-KINDL and the adolescents from 13 to 16 the Kiddo-
KINDL. All the adaptations have 24 questions. The parents answered specific
versions accordingly to the child age, the first from 4 to 7 years old and the
second from 8 to 16, both with 24 questions. All the different versions and adap-
tations have six dimensions: physical wellbeing, emotional wellbeing, self-esteem,
family, friends and school. The answer options are in Likert scale (never, some-
times and many times for the Kiddy-Kindl; and seldom, sometimes, often and all
the time in the Kid-Kindl, Kiddo-Kindl and the parents version). The question-
naires instruct the participants to think about the last seven days when answer-
ing the questions. The scores obtained from the means of each dimension were
transformed in a 0 to 100 scale. The higher scores reflect a higher QOL. The
global score of QOL was obtained from the dimensions total scores (Rajmila et
al., 2004). The Cronbach’s alpha for this questionnaire is 0.87 for the original
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L. P. González-Ramírez et al.
3.3. Procedure
The different KINDL adaptations and versions were apply to the participant in
an interview format. When the patient and its parents arrived to the medical
consult, we explained the research aims to the parents and invited them to par-
ticipate. If the parent agreed, a consent form was provided, explained and
signed. If the child or adolescent agreed to participate, the parent was send to a
different office to answer the questionnaire, while the minor answered its own
version separately. A resident physician, previously trained in the questionnaire
application, conducted the interviews. The participants, minors and their par-
ents needed an average of 20 minutes to answer the measurement instrument.
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4. Results
The sample included fifty-nine cancer patients from 4 to 16 years old. The soci-
odemographic and clinic characteristics are describe in Table 1. The parents in-
cluded in the sample were twenty-six mothers (63.4%), ten fathers (24.4%) and
five other relatives (12.2%). From the parent sample, eighteen were parents or
relatives of a child between 4 to 7 years old, fourteen of children from 8 to 12
and nine were parents of adolescents from 13 to 16.
The means of the QOL dimensions and the global index are in Table 2. In the
patients, we observed statistically significant differences by age group in the di-
mensions emotional wellbeing (p < 0.05), self-esteem (p < 0.05), family (p <
0.05), friends (p < 0.05), school (p < 0.001) and for global index (p < 0.005). For
parents, we identify a difference in friends dimension. The highest mean was in
the school dimension, evaluated by children from the 4 to 7 group (92 ± 14) and
the lowest for the same dimension, but in the adolescent group (57 ± 19). The
means are usually higher in the children’s evaluations, excepting for the adoles-
cent group, were the patients scored lower compared to their parents.
In the global analysis, we found statistical significant differences by gender in
the self-esteem and family dimensions (categorized in the “score mean” variable)
of the KINDL parent version (Table 3). In addition, we observed differences in
school level for the school dimension in the children KINDL and for the variable
“score mean” (Table 4). The main differences were between preschool and ele-
mentary, and preschool and middle school. The same differences were found
between the school dimension and the QOL global index (p < 0.05).
Table 1. Descriptive statistics for the sociodemographic and clinical patient data.
Gender
School level
Tumor location
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Table 2. Mean of scores for KIDL dimensions and global index for patients and parents.
Note: The scores are in a 0 to 100 scale, where the scores closer to 100 represent a better quality of life. M ± SD = Mean ± Standard deviation. p = valor de
probabilidad.
Table 3. Contingency table for gender and self-esteem and family dimensions, using the
score mean for the KINDL parent version.
Female Male
p
n (%) n (%)
Score mean-Self-esteem
Score mean-Family
Note: Fort the variable “score mean”, a mean of each dimension was calculated, developing the categories
“lower or equal to mean” and “Higher than mean”. The χ2 was applied. n (%) = Frequency (percentage). p <
0.05 considered significant.
Table 4. Contingency table for school level and school dimensions, using the score mean
for the KINDL children versions.
Score mean-School
Note: Fort the variable “score mean”, a mean of each dimension was calculated, developing the categories
“lower or equal to mean” and “Higher than mean”. The χ2 was applied. n (%) = Frequency (percentage). p <
0.05 considered significant.
We calculated the associations for the KINDL different children versions, ob-
serving a correlation between age and the QOL dimensions emotional wellbeing
(p = 0.002, r = −0.389), self-esteem (p = 0.003, r = −0.377), family (p = 0.003, r =
−0.378), friends (p = 0.003, r = −0.386), school (p < 0.001, r = −0.636) and QOL
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L. P. González-Ramírez et al.
global index (p < 0.001, r = −0.475). In the KINDL versions for parent, we found
associations between age and the dimensions Friends (p = 0.001, r = −0.433),
school (p = 0.029, r = −0.285) and QOL global index (p = 0.015, r = −0.316).
Comparing the parent and children QOL evaluations, we observed differences
in the family dimension (p = 0.048), finding a higher mean in children’s evalua-
tion (83 ± 16) compared with the parent’s version mean (78 ± 17). When we de-
veloped the analysis by age groups, different results were observed, finding indi-
vidual differences by gender and in the physical wellbeing dimension (p < 0.05)
(Table 5).
Regarding correlations, in the patients 4 to 7 years group we found significant
association for age and friend dimension (p = 0.006, r = −0.552). In the group of
parents with children of this age, we observed correlations for age with school
dimension (p = 0.016, r = −0.497) and QOL global index (p = 0.03, r = −0.452).
In the rest of the age groups, we did not found significant associations.
Finally, in the comparison between patients and parents evaluation, we ob-
served differences for the 4 to 7 years group, in the dimensions school (p =
0.004) and QOL global index (p = 0.048). The rest age groups did not presented
significant associations. The statistically significant results for global analysis and
age groups controlling for gender, school level and age are presented in Table 6.
5. Discussion
Provide integral care to children and adolescents with cancer is an increasing
necessity because of the observed increase in the pediatric patients’ survival rate.
Being able to attend not only the physical symptoms, but also the psychological
and social alterations, will allow us to release patients and families from unne-
cessary suffering, influencing in its quality of life (Abu-Saad Huijer et al., 2013).
Regarding QOL and its dimensions, our results indicate that in the global
analysis, the school dimension obtained the lowest scores (with a mean of 77 ±
21 in the children’s evaluation and 74 ± 19 for the parents), being considered as
the most affected in children and adolescents. The American Cancer Society, has
emphasized the necessity of including services that attend the socioemotional
needs in pediatric oncology units, particularly focusing in provide attention to
Table 5. Mean comparisons between gender and physical wellbeing dimension by age
group.
M ± SD p M ± SD p M ± SD p
Physical wellbeing
Gender
Female 83 ± 11.6
NS NS 0.049
Male 69 ± 12.2
Note: M ± SD = Mean ± Standard deviation. p < 0.05 considered significant. NS = non significant associa-
tions were found.
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L. P. González-Ramírez et al.
Table 6. Statistically significant results by global analysis and age groups for patients and parents.
Self-esteem Physical
Gender NS NS NS NS NS NS
Family dimension
Emotional wellbeing
Self-esteem
Friends
Family School
Age School Friends NS NS NS NS
Friends QOL
QOL
School
QOL
those patients that require more support for the reintegration to school, besides
detecting and intervening in the cognitive or academic difficulties that might
appear as sequels from the cancer treatment (Deasy-Spinetta, 1993).
Conversely, family is a dimension that obtained the highest score (a mean of
83 ± 16) in the children’s evaluation, as well as the self-esteem dimension (80 ±
21) and friends (80 ± 18) for the parent evaluation. We known that cancer is a
disease that generates a great impact not only in the patient, but also in the
whole family, sometime immediately and other times after a while (Cadiz, Ur-
zua, & Campbell, 2011). The family plays an important role for the child and
adolescent adjustment to its cancer treatment, finding that family cohesion is a
main resource for the management of the disease and treatment adherence
(Santos, Crespo, Canavarro, & Kazak, 2015). This justify why most of the exist-
ing interventions are designed for caregivers and relatives of children and ado-
lescents with cancer (Fedele et al., 2013; Kazak, 2005; Marsland et al., 2013; Me-
hranfar et al., 2012; Wakefield et al., 2015). These efforts are not to be dismissed,
considering that the parents’ pressure and stress directly influence the children
and adolescents’ clinic characteristics and QOL (Litzelman et al., 2011). The
self-esteem level is influenced by many factors, among which is the type of tu-
mor, where other studies have found that children with hematologic malignity
tend to have better self-esteem than those with solid tumors that require ampu-
tations (Pek et al., 2010). Regarding the friends dimension, we will discuss later
the differences found by group of age, where the score for this dimension de-
creases over the time.
In the analysis performed by age group to the patients’ evaluations, we found
statistically significant differences for almost every dimension, excepting physi-
cal wellbeing, finding that adolescents tend to have lower QOL that the younger
groups. These results differ from other research that reported that adolescents
have better QOL, mainly in the physical, psychological and future perspective
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dimensions, while children only scored better in physical symptoms, where ap-
parently are less affected by the disease symptoms than the adolescents, espe-
cially in pain (Vlachioti et al., 2016). Other study found results similar to our re-
search findings, observing a greater affectation of QOL in adolescents, particu-
larly in physical functionality (Smith et al., 2013). The adolescents with cancer
tend to present greater anger, frustration, emotional agitation and depression,
according to other authors, symptoms related to the self-image alterations gen-
erated after the diagnosis. However, even when children appear to be more emo-
tionally stable, tend to present uncertainty and confusion feelings because they
did not understand its condition, observing that children not always describe
they real feelings about the disease (Chaudhry & Siddiqui, 2012). All these con-
siderations emphasize the necessity for effective socioemotional interventions,
designed by age group.
For the parents, when we compared the mean scores by age group, only dif-
ferences in the friends dimension appeared. It has been observe that some par-
ents with high stress levels tend to hide its children’s cancer diagnosis to persons
outside the family (Masa’Deh, Collier, Hall, & Alhalaiqa, 2013). It is important
to develop future research that can provide information about the parents’ mo-
tivation to act in a specific way against this disease, being important to know the
implications that social support and adjustment can have for children and par-
ents.
In addition, we observed some differences by gender in the global analysis, for
the parents in the self-esteem and family dimensions, and for the patients, in the
13 to 16 year group, in the physical wellbeing dimension. In all the dimensions,
the male presented lower scores, which represent lower QOL. Other studies have
found differences by gender in the reverse direction, observing that males pre-
sented better QOL in dimensions such as physical and cognitive functions, while
the females reported better QOL in the social function dimension. This same
study points out that, females present higher level of depression because of the
greater influence that physical changes have in them (Vlachioti et al., 2016).
Regarding the differences by school level, our results showed differences in the
global analysis for the school dimension, where the patients evaluated QOL less
favorable as the school level increased. This situation could be originated by the
cognitive alterations remaining after some cancer treatments, or even because of
some psychological or emotional sequels generated after the experience of the
disease (Deasy-Spinetta, 1993). Evidencing the need to develop effective socioe-
motional interventions that approach the patient’s school life.
The age variable presented diverse statistically significant differences. For the
children and adolescents evaluations, in the global analysis, all the dimensions,
excepting physical wellbeing and QOL global index presented differences. For
the parents, the friends and school dimension, as well as the QOL global index.
In the analysis developed by age group, only the 4 to 7 years group presented
differences in the friends dimension, evaluated by patients, and in the school
dimension and global index, when evaluated by the parents. In all cases, we ob-
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because it could explain contradictory results with other research and the high
scores in the self-esteem dimension. Finally, the transversal design does not al-
low knowing the variations of QOL through the different stages of the disease,
being important to develop longitudinal studies than can provide information
about that.
6. Conclusion
Age, gender and school level are variables related to QOL in children and ado-
lescents with cancer. Our findings suggest that the male and older patients tend
to have lower QOL. School dimension scored lower in QOL evaluation, being
one of the most affected areas after the cancer diagnosis for our patients’ sample.
Agreeing with the existing scientific evidence, we found differences in the QOL
evaluations performed by patients and their parents, reflecting differences in the
perception of the conditions faced by the participants. Even when the QOL
evaluations performed by parents or guardians provide important information,
they do not reflect directly the patients’ QOL perceptions, so, it should not be
substitute.
Patients require a multidisciplinary attention that does not only focus in the
physical symptoms that children and adolescents with cancer have, but also at-
tends the socioemotional alterations presented according to age, gender and
school level. The QOL measurements can orient us about the areas than can be
more affected in each group, and plan interventions specific for the individual
and family needs. Despite the parents or guarding evaluation of children QOL
provide useful information, it does not reflect the QOL perceived by the patients,
so, it should not be substituted by them.
Acknowledgements
To the participants and institutions that collaborated in the data collection. To
the University of Guadalajara and the Consejo Nacional de Ciencia y Tecnología
(National Science and Technology Council CONACyT).
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