-

Patient-Reported Outcomes
Contents lists available at sciencedirect.com
Journal homepage: www.elsevier.com/locate/vhri

Health-Related Quality of Life Among Children With Pneumonia in

Indonesia Using the EuroQoL Descriptive System Value Set for Indonesia
Ingenida Hadning, MSc, Tri Murti Andayani, PhD, Dwi Endarti, PhD, Rina Triasih, PhD

A B S T R A C T

Objective: In Indonesia, no study has been published to evaluate the utility scores among children with pneumonia. This study
aims to quantify the health-related quality of life (HRQOL) of children with pneumonia in Indonesia using the EuroQoL
Descriptive System (EQ-5D-5L) value set for Indonesia.
Methods: A hospital-based cross-sectional survey was conducted between September 2017 and March 2018. Children aged
,14 years old who were hospitalized for pneumonia in 11 hospitals in Yogyakarta were recruited for this study. The EQ-
5D-5L and visual analogue scale (EQ-VAS) were applied to the parents (proxy-assessment).
Results: A total of 384 patients were hospitalized with pneumonia. Among those patients, 338 (88.02%) were without
congenital diseases; and 46 (11.98%) were with congenital diseases. The mean of utility scores in all patients was 0.67 6 0.28,
while the mean of visual analog scale (VAS) score was 67.66 6 21.98. The mean of utility scores and VAS scores decreased
among those with congenital diseases, which is 0.51 6 0.51 and 65.41 6 19.42, respectively. However, the utility score and
VAS scores among patients without congenital diseases were higher than the category of all patients. Showing the number
of,0.69 6 0.23 and 68.0 6 22.3, respectively.
Conclusions: This study confirmed that children with pneumonia had a negative impact on HRQOL. The HRQOL could be used
for future economic evaluation studies.

Keywords: child, health-related quality of life, pneumonia, proxy, utility.

VALUE HEALTH REG ISSUES. 2021; 24:12–16

Introduction
Pneumonia is one of the significant health problems in chil-
dren globally with high morbidity and mortality rates.1 Every year,
2 million children worldwide die from pneumonia, which is
higher than the mortality owing to AIDS, malaria, and measles.2 In
Indonesia, pneumonia is 1 of the 5 most prominent causes of
death in children. In 2013, the mortality rate for children in
Indonesia .5 years old caused by acute respiratory infections
reached 16%, including pneumonia.3
Pneumonia also has a negative impact on health-related
quality of life (HRQOL). A study that evaluated the quality of life
with EuroQoL Descriptive System (EQ-5D-5L) instrument in
elderly patients (.65 years old) with pneumonia in the
Netherlands showed EQ5D-index was 0.81 (0.23), as well as
EQ5D-VAS was 71 (15.3).4 Another study in adult patients with
community acquired pneumonia (CAP) aged 19 to 35 years, using
with the same EQ-5D-3L instrument, showed that there was a
decrease in quality of life in the first month of CAP (ie, 0.59
[0.24]).5 In children, it was reported that children hospitalized
with pneumonia experienced a decreased quality of life (3.4 6 1.5)
compared with controls (1.2 6 0.6). Leisure restriction, worry, and
stress became the 3 most influencing factors of declining the
quality of life.6
The evaluation of HRQOL in pneumonia patient is impor-
tant to design the intervention for improving patients’
outcome as well as to monitor and to evaluate the effective-
ness of treatment and intervention. The measurement of
HRQOL includes a comprehensive aspect of the disease and
treatment impacts in terms of symptoms, therapeutic effects,
side effects, patient functional status, and financial impact.7
HRQOL is usually assessed using a generic instrument, such
as the EuroQOL 5-Dimension questionnaire (EQ-5D).8 The
generic preference-based measurement of HRQOL is
commonly used in the economic evaluation of health in-
terventions as they provide a multidimensional description of
health that is combined with survival to generate quality-
adjusted-life-years,9 which is an outcome in the cost-utility
analysis. The EQ-5D were selected as Indonesian versions
have already been validated and approved by the EuroQol
group, respectively. The EQ-5D is considered suitable for
people aged 14 years and above. An EQ-5D youth (EQ-5D-Y)

2212-1099/$36.00 - see front matter ª 2020 Published by Elsevier Inc. on behalf of ISPOR–The professional society for health economics and outcomes research.

version for children aged between 7 to 12 years has been
developed but has not been adapted to the Indonesian context.
Subjects of this study was mostly aged 5 years old, who had
not been able to fulfill questionnaires. Therefore, we measured
the use of proxy close to the patients, in this case parents are
the best and possible thing to do even though allowing bias.
The use of parents as proxy was the limitation of this study.
HRQOL of pneumonia patients is also assessed using a specific
instruments, such as St. George's Respiratory Questionnaire, the
CAP-Sym, the CAP-BIQ, the CAP Score, the Metlay score 1, and the
Metlay score 2.10-15 The overall content validity of all available
CAP-specific instruments is unclear.16 Based on current evidence
and several reasons above, the generic instruments are likely to be
of greater value.
Currently, there has been a very rare study on HRQOL in
Indonesia. No study on HRQOL for children with pneumonia in
Indonesia has been published. To the best of our knowledge, this is
the first study to evaluate the HRQOL of children with pneumonia
in Indonesia using the EQ-5D-5L value set for Indonesia. The
previous study on HRQOL in Indonesia was in patients with cer-
vical cancer using the EQ-5D-3L with Malaysia value set generic
instrument.17 Other studies on HRQOL in Indonesia also con-
cerning human papillomavirus-related cancer used the EQ-5D-5L
generic instrument with Thailand value set and cancer-specific
questionnaire European Organization for Research and Treat-
ment of Cancer Quality-of-Life Questionnaire C30.18 Thus, this
study is expected to better illustrate real data for HRQOL among
children with pneumonia in Indonesia.
Methodology
Subjects
We conducted a cross-sectional study, which involved children
who were hospitalized with the diagnosis of pneumonia in 11
hospitals in Yogyakarta, Indonesia, from September 2017 to March
2018. The hospitals were selected to represent 5 districts in
Yogyakarta Province and also the classification of hospitals. In
Indonesia, hospitals were classified into 4 types, namely: A B, C,
and D. The classification was based on the services provided and
equipment owned by hospitals. In this study, we took 1 type A, 5
type B, 2 type C, and 2 type D hospital.
The inclusion criteria were children aged ,14 years old who
were hospitalized in the ward (nonintensive care) with pneu-
monia. Those whose data was incomplete were excluded. The
diagnosis of pneumonia was made by the doctor, based on clinical
and radiological (chest x-ray) findings. Informed consent was
obtained from the parents of the eligible patients.
Data collection and analysis
Currently, there has been a very rare study on HRQOL in
Indonesia. No study on HRQOL for children with pneumonia in
Indonesia has been published. To the best of our knowledge, this is
the first study to evaluate the HRQOL of children with pneumonia
in Indonesia using the EQ-5D-5L value set for Indonesia. The
previous study on HRQOL in Indonesia was in cervical cancer
patients using the EQ-5D-3L with Malaysia value set. Thus, this
study is expected to better illustrate real data for HRQOL among
children with pneumonia in Indonesia. The HRQOL could be used
for future economic evaluation studies.
Data collected by trained interviewers, who were the last year
pharmacy students. Interviewers conducted a face-to-face inter-
view with the parents of the eligible patients to assess their
HRQOL by asking questions in the EQ-5D-5L instrument including
PATIENT-REPORTED OUTCOMES 13
their mobility, self-care, usual activities, anxiety or depression,
and pain or discomfort.
HRQOL was evaluated using the EQ-5D-5L instrument in the
Indonesian language version provided by the EuroQol Group.19
Descriptive analysis was used to present the HRQOL in terms of
patients’ health state, visual analog scale (VAS) and utility score.
EQ-5D is a generic instrument widely used to evaluate HRQOL.20
The EQ-5D consists of 2 parts: the EQ-5D descriptive system and
the EQ-5D visual analog scale (EQ-5D VAS). The EQ-5D descriptive
system comprises 5 dimensions: mobility, self-care, usual activ-
ities, pain or discomfort, and anxiety or depression. This research
used the EQ-5D-5L instrument. The EQ-5D-5L descriptive system
provides 5 possible response categories. For instance, mobility
asking about walking, the response is either no problem (level 1),
or slight problems (level 2), or moderate problems (level 3), or
severe problems (level 4), or unable to walk or extreme problems
(level 5).20 The utility can be converted from EQ-5D health states
using a country-specific scoring algorithm and value sets. Utility
generally ranges from 0 (death) to 1 (perfect health).21 Utility (EQ-
5D index score) values were calculated using the Indonesia value
set.22 The EQ-5D VAS records the respondent’s self-rated health on
a vertical, visual analog scale where the endpoints are labeled as
“best imaginable health state” and “worst imaginable health
state.” The scale ranges from 0 for the worst health state to 100 for
the best health state.21 This information can be used as a quan-
titative measure of health outcome as judged by the individual
respondents.23,24
We also reviewed patient's medical records to gain de-
mographic and clinical information of the eligible patients (ie, age,
sex) and category of patients (ie, pneumonia without congenital
diseases; pneumonia and congenital diseases).
Ethical consideration
The study gained ethical approval from the Medical and Health
Research Ethics Committee of the Faculty of Medicine, Gadjah
Mada University, Dr Sardjito General Hospital, Indonesia with the
reference number (KE/FK/0800/EC/2017).
Results
A total number of 384 patients were eligible for the study, with
the mean age of 2.04 years (standard deviation 2.35). The majority
(89.32%) of the patients aged ,5 years old, with more male than
female (58.6%. and 41.4%, respectively). There were 338 patients
(88.02%) without congenital diseases, and 46 patients (11.98%)
with congenital diseases (Table 1).
Table 1. Patient characteristics.
Characteristic N = 384 %
Age
Mean 6 standard
deviation: 2.04 6 2.35 y
,5 y 343 89.32
5-14 y 41 10.68
Sex
Female 159 41.41
Male 225 58.59
Patient categories
Pneumonia, without 338 88.02
congenital diseases
Pneumonia and congenital diseases 46 11.98
14 VALUE IN HEALTH REGIONAL ISSUES MAY 2021

Table 2. EQ-5D descriptive system in each dimension.

Dimension No problem Slight Moderate Severe Extreme All problems

problem problem problem problem
N % N % N % N % N % N %
All patients diagnosed
with pneumonia
(n = 384)
Mobility 204 53.13 127 33.07 39 10.16 9 2.34 5 1.30 180 46.88
Self-care 154 40.10 187 48.70 27 7.03 7 1.82 9 2.34 230 59.90
Usual activity 207 53.91 127 33.07 37 9.64 7 1.82 6 1.56 177 46.09
Pain/discomfort 121 31.51 217 56.51 36 9.38 9 2.34 1 0.26 263 68.49
Anxiety/depression 141 36.72 174 45.31 51 13.28 16 4.17 2 0.52 243 63.28
Pneumonia, without
congenital diseases
(n = 338)
Mobility 183 54.14 118 34.91 31 9.17 6 1.78 0 0.00 155 45.86
Self-care 133 39.35 176 52.07 22 6.51 5 1.48 2 0.59 205 60.65
Usual activity 182 53.85 117 34.62 34 10.06 4 1.18 1 0.30 156 46.15
Pain/discomfort 101 29.88 202 59.76 29 8.58 6 1.78 0 0.00 237 70.12
Anxiety/depression 124 36.69 163 48.22 38 11.24 13 3.85 0 0.00 214 63.31
Pneumonia and
congenital diseases
(n = 46)
Mobility 21 45.65 9 19.57 8 17.39 3 6.52 5 10.87 25 54.35
Self-care 21 45.65 11 23.91 5 10.87 2 4.35 7 15.22 25 54.35
Usual activity 25 54.35 10 21.74 3 6.52 3 6.52 5 10.87 21 45.65
Pain/discomfort 20 43.48 15 32.61 7 15.22 3 6.52 1 2.17 26 56.52
Anxiety/depression 17 36.96 11 23.91 13 28.26 3 6.52 2 4.35 29 63.04

EQ-5D indicates Euro Quality of Life 5 dimension.

The most common problems related to the quality of life Discussion

among all patients were pain or discomfort (68.5%), followed by
anxiety or depression (63.3%), self-care (59.9%), mobility (46.9%),
and common activity (46.1%). A similar problem of pain or
discomfort was also most commonly documented among those
without congenital diseases (70.1%). Meanwhile, among patients
with congenital disease, anxiety or depression was the most
common reported problem (63.0%). Other variables of HRQOL for
each category of the patients are presented in Table 2.
The mean of utility scores in all patients was 0.67 6 0.28, and
the mean of VAS score was 67.66 6 21.98. The utility scores and
VAS scores were decreased among those with congenital diseases.
However, the utility score among patients without congenital
diseases is higher than the category of all patients (Table 3).
The most common health states perceived by all patients
(proxy-assessment) diagnosed with pneumonia in Indonesia were
the health state of 22222 (9.90%), followed by health states of
11111 (9.11%), and 11121 (5.73%). The health status of 22222 was
also mostly perceived by patients diagnosed with pneumonia,
without congenital diseases (10.95%). Meanwhile, the health sta-
tus of 11131 was mostly perceived by patients diagnosed with
pneumonia and congenital diseases (10.87%). There was only 1
patient (0.26%) reporting the health state of 55555 was by patients
diagnosed with pneumonia and congenital diseases. The health
states reported by patients (proxy-assessment) indicated that
most of the pneumonia patients in Indonesia reported having no

Table 3. Descriptive of EQ-5D visual analogue score and EQ-5D index score classified by patient criteria.

Category N EQ-5D index scores EQ-5D VAS scores

QoL SD 95% CI of mean SE QoL SD 95% CI of mean SE
Lower Upper Lower Upper
All patients diagnosed with pneumonia 384 0.67 0.28 0.64 0.69 0.01 67.66 21.98 65.46 69.86 1.12
Pneumonia, without congenital diseases 338 0.69 0.23 0.66 0.71 0.01 67.96 22.31 65.58 70.34 1.21
Pneumonia and congenital diseases 46 0.51 0.51 0.36 0.66 0.07 65.41 19.42 59.80 71.02 2.86
CI indicates confidence interval; EQ-5D, Euro Quality of Life 5 dimension; QoL, quality of life; SD, standard deviation; VAS, visual analogue scale.

problem and slight problem in EQ-5D descriptive system
dimensions.
Descriptive statistics of EQ-5D health states in all patients
(proxy-assessment) diagnosed with pneumonia and patients
diagnosed with pneumonia without congenital diseases reported
that they did not have a problem with mobility and usual activity.
Meanwhile, self-care, pain or discomfort, and anxiety or depres-
sion were commonly reported that they have a slight problem.
Lastly, descriptive statistics of EQ-5D health states in patients
diagnosed with pneumonia and congenital diseases showed that
the most frequently reported of all dimension problems were no
problem.
Furthermore, our findings were in line with those of other
countries using different HRQOL instruments. For instance, in
Thailand, it was the life of children with pneumonia using EQ-5D,
HUI3, EQ-VAS, and HUI2 assessed by proxy were 0.48, 0.58, 0.67,
and 0.69, respectively. This research is conducted by hospital-based
cross-sectional surveys from hospitals in different parts of Thailand.
As would be expected, all instruments offered by different scores for
the same health condition. For proxy-assessment, the EQ-VAS and
HUI2 gave the highest scores while the EQ-5D and HUI3 tended to
provide the lowest. The EQ-5D yielded the lowest HRQOL scores.25
The EQ-5D, in particular, may not be sufficiently sensitive for
measuring HRQOL in patients with sensory impairment as it does
not include a sensory dimension.26-28
Other studies on HRQOL in pediatric pneumonia patients
were carried out in Israel. The study involved 213 pediatric
pneumonia patients in which 34 patients (16%) were admitted to
the pediatric ward, 73 patients (34%) were to the pediatric
emergency department, and 106 patients (50%) were to the
primary pediatric clinic. The quality of life questionnaires
included parameters of worry, stress, less patience, sleep quality,
less time for family, relaxation, helplessness, repercussions on
parents' health, source of within family, morale affected, and
overall quality of life to decrease. After being compared with the
control group (n = 99), it could be seen that there was a
decreased quality of life in patients in all 3 groups. The biggest
decrease occurred in patients admitted in the pediatric ward,
with 3 main factors causing the greatest decrease, namely leisure
restriction, worry, and stress.6
It is important to note the limitation of our study. Although it
involved 11 hospitals representing all districts in Yogyakarta
Province, Indonesia, this research was only conducted in Yogya-
karta Province. Therefore, it cannot be generalized for other sites
in Indonesia, because they have different culture and background,
which may affect the quality of life. The use of parents as proxy
was also the limitation of this study. Subjects of this study was
mostly aged 5 years old, who had not been able to fulfill ques-
tionnaires. Therefore, we measured the use of proxy close to the
patients, in this case parents are the best and possible thing to do
even though allowing bias.
Conclusions
This study confirmed that children with pneumonia had a
negative impact on HRQOL. The most health problems reported
were pain or discomfort and anxiety or depression. The evalua-
tion of HRQOL in pneumonia patient is important to design the
intervention for improving patients’ outcome as well as to
monitor and to evaluate the effectiveness of treatment and
intervention.
PATIENT-REPORTED OUTCOMES 15
Article and Author Information
Accepted for Publication: May 11, 2020
Published Online: January 16, 2021
doi: https://doi.org/10.1016/j.vhri.2020.05.010
Author Affiliations: Doctoral Study Program of Pharmacy, Universitas
Gadjah Mada, Yogyakarta, Indonesia (Hadning); School of Pharmacy, Uni-
versitas Muhammadiyah Yogyakarta, Yogyakarta, Indonesia (Hadning);
Department of Pharmacology and Clinical Pharmacy, Universitas Gadjah
Mada, Yogyakarta, Indonesia (Andayani); Department of Pharmaceutics,
Universitas Gadjah Mada, Yogyakarta, Indonesia (Endarti); Department of
Paediatrics, Universitas Gadjah Mada, Yogyakarta, Indonesia (Triasih).
Correspondence: Ingenida Hadning, MSc, Faculty of Medicine and Health
Sciences, Universitas Muhammadiyah Yogyakarta, Yogyakarta Indonesia
55183. Email: ingenida.hadning@umy.ac.id
Author Contributions: Concept and design: Hadning, Andayani, Endarti,
Triasih
Acquisition of data: Hadning
Analysis and interpretation of data: Hadning, Andayani, Endarti
Drafting of the manuscript: Hadning, Andayani, Endarti, Triasih
Critical revision of the paper for important intellectual content: Andayani,
Endarti, Triasih
Statistical analysis: Hadning
Provision of study materials or patients: Hadning
Obtaining funding: Hadning
Administrative, technical, or logistic support: Hadning
Supervision: Andayani, Endarti, Triasih
Conflict of Interest Disclosures: The authors reported no conflicts of
interest.
Funding/Support: This research was supported by The Ministry of
Research, Technology and Higher Education Republic of Indonesia and
Universitas Muhammadiyah Yogyakarta.
Role of the Funder/Sponsor: The funder had no role in the design and
conduct of the study; collection, management, analysis, and interpretation
of the data; preparation, review, or approval of the manuscript; and de-
cision to submit the manuscript for publication.
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