ABSTRACT

BACKGROUND Pediatric Brain tumors are the most common solid tumor of childhood and
the no. 1 cause of death among all childhood cancers. In United States of America, brain
tumor’s prevalence is 21.42 per 100.000 population. Even though survival rate is improving,
the impact of long-term treatment on the quality of life is still a challenge. The aim of this study
is to evaluate the quality of life using Peds-Ql 4.0 Generic Core Scales before and after
treatment.

METHODS Twenty-six pediatric patients with brain tumor excision surgery were evaluated
using Peds Ql 4.0 Generic Core Scales. The evaluation included before and after condition of
the patient.

RESULTS According to the score of Peds-Ql 4.0 Generic Core Scales, before the treatment,
patients were classified as medium functioning (58.54/92) and as intermediate functioning
(37.3/92) after the treatment.

DISCUSSION and CONCLUSION Our results suggest that patients after treatment (surgery,
chemotherapy, radiation) show improved quality of life score using Peds-Ql 4.0 Generic Core
Scales.

KEY WORDS Quality of life,

BACKGROUND
Pediatric brain tumors are the most common solid tumors remaining a leading cause of cancer-related death among
children with a prevalence rate 2.28 per 100,000 populations in the United States of America. Even though the
mortality rate is declining due to earlier diagnosis and the development of more sophisticated and accurate
diagnostic tools, the impact of long-term treatment on the children quality of life (QOL) still a challenge.
Quality of life evaluation becomes a useful tool for knowing the treatment adequacy and effects after it. In
addition, the evaluation of patients quality life can also be an important variable in the treatment process and the
end point of clinical trials.3 The measurement may also provide valid information related to physical functioning,
self-confidence and anxiety levels.

Pediatric Quality of Life

Quality of life is defined as a concept that includes broad physical and psychological characteristics that describe
the individual's ability to play a role in his environment and gain satisfaction from what he does. Health-related
quality of life describes the quality of life after and/or is experiencing a disease that obtains a treatment.6-9

The quality of life of children is understood as a form of a holistic process, from the extraction of the tumour to
the end of medical treatment. The quality of life of children is generally influenced by four factors, including:
global, external, interpersonal and personal conditions. Global conditions would be the government policies and
principles in the community that provide child protection; external conditions may include characteristics of the
leaving residence, family's socioeconomic status, health service and parent education; interpersonal conditions
are composed by social relationships within the family (parents, siblings and other relatives at home) and peers;
personal conditions involve physical, mental and spiritual dimensions of the child: age, sex, genetics, hormonal
and nutritional status.10.
Etiologic factors that may affect include; location and type of the primary tumor, spread of the tumor, age and
increased intracranial pressure. Therefore, grouping and 'preliminary findings' are essential for the diagnosis of
malignant brain tumors in children. 4.

Quality life Questionnaire

In order to quantificate the quality of a child's life, PEDS-QL 4.0 Generic Scales questionnaire is widely used.
Four functions are evaluated; physical function (8 questions), emotional function (5 questions), social function (5
questions) and school function (5 questions). Questions can be answer according three categories; not at all a
problem (0), sometimes (2) and big problem (4). In addition to the verbal answers, correspondents may also
respond to the facial expressions as listed below.44

(Natasha has to attached the diagram)

Despite a considerable amount of information concerning the evaluation of quality life found worldwide,
relatively little is known regarding this fact in pediatric indonesian patients. In fact, no Indonesian studies have
based their research on PEDS-QL 4.0 in pediatric malignant brain tumor patients. This is the reason why the aim
of this study is to evaluate the quality of children’s lives before and after treatment using Peds-Ql 4.0 Generic
Core Scales in Indonesian patients aged from 2 to 18 years old.

Pediatric brain tumors

Brain tumors are the most common category of childhood solid tumors and comprise 15% to 20% of all
malignancies in children. Presentation, symptoms, and signs depend on tumor location and age of the patient at
the time of diagnosis. This graphic summarizes the most common childhood central nervous system tumors.

Graph 1. Distribution of brain tumors according to histological features14

The incidence of brain tumors in children rose by 35% between 1975-1984. In 1980, MRI (Magnetic Resonance
Imaging) machines appeared and showed strong evidence in the detection of 'low grade' tumors that were
previously not found with imaging facilities less.17,18

METHODS

Forty-three cases of malignant and benign tumors among children from 2 to 18 years old were reported between
2015 and 2017 in Siloam Hospitals Lippo Village, Tangerang, Indonesia.

38 patient out of 43 underwent neurosurgery and 26 patients out of 43 were included in our study (5 patients did
not continue the treatment, 11 died since the operation and 1 family denied to conduct the information). The
patient condition was evaluated with Peds-Ql 4.0 Generic Core Scales. The questionnaires were completed via
telephone to all parents or a guardian according to the medical record data provided by the hospital. Participants
who did not reply after the third call on the same day for three consecutive days were directly excluded.

From 26 patients, twelve of them were conducted by alloanamnesis and fourteen of them were conducted by
autoanamnesis. All of 26 patients, were asked using Peds-Ql 4.0 Generic Core Scales. One patient denied to
participate after being called three times a day for three consecutive days and did not answers the calls. Three
patients did not continue with medication thus could not be evaluate before and after treatment. Eleven patients
died and the evaluation of quality of life could not be conducted.

The data obtained was processed using SPSS software 24.0 version and Microsoft Excel and classificated into
four categories according the grade of QOF reported: high-functioning, intermediate-functioning, medium-
functioning and low-functioning. Successively, data was assessed before and after treatment and visible changes.

RESULTS AND DISCUSSION

5.1 Results

As shown in table 5, the majority of the participants were between 10-13 and 14-18 years old. 65% of the patients
were male. Half of the participants had a benign brain tumor and the other 50% were diagnosed with a malignant
tumor.

n %
Age
2-5 4 15
6-9 3 12
10-13 6 23
14-18 9 35
>18 4 15
Gender
Male 17 65
 Female 9 35
Brain Tumor
Benign 13 50
Malignant 13 50
Table 5. Detailed Demographic Tables

In figure 8, the 0-92 point range scores the overall quality of life of 23 questions.
In figure 9, the range of values 0-32 points assesses the physical function of 8 questions.
In figure 10, the 0-20 points range assesses the emotional, social and school functions of 5 questions.

Picture 8. Quality of life Classification

Picture 9. Physical Function Classification

Figure 10. Emotional, Social, School Function Classification

Medication Mean SD Min/Max

Quality of Life Before 58.54±11.57 38/84
After 37.3±14.24 16/66
Physical Function Before 23.61±3.35 18/32
After 15.54±5.38 6/24
Emotional Function Before 9.69±4.26 4/20
After 7.0±6.46 0/20
Social Function Before 12.69±3.79 6/20
After 7.38±5.85 0/20
School Function Before 12.54±3.73 8/20
After 7.38±5.11 2/20
Table 6. Numeric Data of Peds-Ql 1

Table 6 shows a comparison of results before and after treatment according Peds-Ql.
The pre-treatment quality of life in the category was quite poor (58.54) to be quite good (37.3). Physical function,
social function and pre-treatment school function in bad enough category (23.61,12.69,12.54) become quite good
(15.54,7.38,7.38). While the emotional function before treatment (9.69) and after treatment (7.0) did not find the
difference that is in good enough category.

Medication P Value 95%CI

Quality of Life Before 0.000* 54.1-63

After 31.8-42.8
Physical Function Before 0.000* 22.3-24.9
After 13.5-17.6
 Emotional Function Before 0.029* 8.05-11.3
After 4.25-9.48
Social Function Before 0.000* 11.2-14.1
After 5.13-9.63
School Function Before 0.000* 11.1-13
After 5.42-9.34
*Npar Test, Wilcoxon Signed Rank Test
Table 6. Numeric Data of Peds-Ql 2

From table 7, it can be seen that there are significant changes of data according to P Value obtained from Npar
Test and Wilcoxon Signed Rank Test. Where all P values get the result below 0.005 (<0.005). Meanwhile, for
confidence interval the value is not much different from the mean of each function and quality of life before and
after treatment so that if the research is repeated then there is a 95% chance of the results will be repeated in the
next research.

After
Before
Medication Medication
n % n %
Physical Function
High Functioning 0 0 6 23
Intermediate Functioning 0 0 7 27
Medium Functioning 16 62 13 50
Low Functioning 10 38 0 0
Table 8. Percentage of Physical Function

From table 8, if 4 classifications are categorized into only 2 category, good (high functioning and intermediate
functioning) and bad (medium functioning and low functioning) then the results obtained from physical function
is before treatment 0% in good category and 100% in bad category while after treatment 50% in good category
and 50% in bad category.

Before After
Medication Medication
n % n %
Emotional Function
High Functioning 3 11 10 38
Intermediate Functioning 16 62 10 38
Medium Functioning 5 19 4 16
Low Functioning 2 8 2 8
Table 9. Percentage of Emotional Function

From table 9,if 4 classifications are categorized into only 2 category, good (high functioning and intermediate
functioning) and bad (medium functioning and low functioning) then the results obtained from emotional function
is before treatment as much as 73% in good category and 27% in bad category while after treatment 74% in good
category and 26% in bad category.

Before After
 Medication Medication
n % n %
Social Function
High Functioning 0 0 10 38
Intermediate Functioning 9 35 12 46
Medium Functioning 14 54 2 8
Low Functioning 3 11 2 8
Table 10. Percentage of Social Function

From table 10,if 4 classifications are categorized into only 2 category, good (high functioning and intermediate
functioning) and bad (medium functioning and low functioning) then the results obtained from the social function
was prior to treatment with 35% in the good category and 65% in the bad category whereas after treatment 84%
in both categories, and 16% in the poor category.
Before After
Medication Medication
n % n %
School Function
High Functioning 0 0 9 35
Intermediate Functioning 14 54 14 54
Medium Functioning 8 30 0 0
Low Functioning 4 16 3 11
Table 11. Percentage of School Function

From table 11,if 4 classifications are categorized into only 2 category, good (high functioning and intermediate
functioning) and bad (medium functioning and low functioning) then the results obtained from the school function
are before treatment as much as 54% in good category and 46% in bad category while after treatment 89% in good
category and 11% in bad category.
Before After
Medication Medication
n % n %
Quality of Life
High Functioning 0 0 7 27
Intermediate Functioning 4 16 13 50
Medium Functioning 17 65 6 23
Low Functioning 5 19 0 0
Table 12. Percentage of Quality of Life

From table 12,if 4 classifications are categorized into only 2 category, good (high functioning and intermediate
functioning) and bad (medium functioning and low functioning) then the results obtained from quality of life are
before treatment as much as 16% in good category and 84% in bad category while after treatment 77% in good
category and 23% in bad category.

5.2 Discussion

In this study, the instrument used was PEDS-QL 4.0 quizoner that include four functions of study (physical,
emotional, social and scholar). The data obtained shows that the functions listed above are not normally
distributed. This is the reason why the Wilcoxon-test is not an option for analysing the data leading us to use
Paired t-test.

The research was conducted through telephonic interviews inducing several limitations; for instance, the
expression of the child could not be evaluated. Fortunately, the expression evaluation does not affect the outcome
of this study. In fact, it is known that the evaluation of child expression only makes it easier in case the child can
not speak yet; only 15% of the participants were aged between 2-5 years old (considered as the age limit to be
able to speak). Moreover, it is only one of the backup instruments in the data collection in the questionnaire; in
this study, 12 patients performed alloanamnesis in the age range under 10 years old and 14 patients aged over 11
years old completed the questionnaire by doing an autohistory.

Pediatric patients in this study entirely followed treatment after being diagnosed with a brain tumor. Treatment in
this research is neurosurgery, meaning that all patients who followed chemotherapy and radiotherapy were not
investigated in this study.
In previous studies, pediatric patients with brain tumors experienced better alterations in the function of life.3,4,6
Table 7 provides information on each function (physical, emotional, social and school function). Patients for the
category were quite good and both having a percentage percentage of 0%, 73%, 54% and 35% before treatment
and after treatment. Patients with a good enough category and good in the above functions have a percentage of
50%, 74%, 89% respectively 84%. Thus, it can be judged that each function has a percentage increase in the
direction of a better category. Furthermore, the overall results of pediatric patients before treatment were classified
as poor (58.54 / 92) to be good enough (37.3/92); each function has increased or remained showing an
improvement of QoF before treatment.

CONCLUSION
Quality of life of pediatric patients with brain tumors before and after treatment showed an increase in the quality
of life of the class medium functioning to intermediate functioning. In addition, there are also improvements of
physical function, emotional function, social function and school function.

The weakness in this study is the limitations of research subjects because as much as approximately 25% of the
subjects died. In addition, subjects were lost to follow-up due to time constraints of the study. Follow-up of
patients can make the results of this study more present the impact of treatment on the quality of life of children.
The advantages in this study is the questionnaire used to present the quality of life of the child through the four
functions it contain.
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