JOURNAL OF PALLIATIVE MEDICINE
Volume 14, Number 3, 2011
ª Mary Ann Liebert, Inc.
DOI: 10.1089/jpm.2010.0412
Measuring Symptom Distress in Palliative Care:
Psychometric Properties of the Symptom
Assessment Scale (SAS)
Samar M. Aoun, B.Sc.(Hons), M.P.H., Ph.D.,1 Leanne Monterosso, BNurs(Hons), Ph.D.,2
Linda J. Kristjanson, B.N., M.N., Ph.D.,1 and Ruth McConigley, B.Sc., MNurs, Ph.D.3
Abstract
Given the variety of palliative care settings within which symptom distress must be assessed, development of a
valid and reliable clinical tool that can be simply applied in every day practice is needed. The Symptom Assessment Scale (SAS) uses a 0–10 numerical scale with zero being no symptom and 10 being the worst possible. The
key symptoms included in the scale are breathing, bowel problems, appetite problems, pain, insomnia, nausea and
fatigue. The instrument is structured to allow either the patient, family member or nurse to assess the symptoms.
The scale was tested on 572 cancer patients recruited from five palliative care services in Western Australia. Results
indicated that the instrument was brief, clinically useful and was administered with minimal missing data. Internal
consistency reliability estimates of the scale ranged from 0.64–0.92 as measured by the Cronbach’s alpha coefficient. Test-retest reliabilities of 0.84–0.92 were obtained using Pearson’s correlation co-efficient. The instrument
does not provide an in-depth assessment of individual symptoms, but serves as a screening tool to identify
troublesome symptoms that warrant attentive and immediate investigation and comprehensive assessment.
Introduction
atients living with cancer and other life-limiting illnesses may experience myriad complex symptoms, such
as pain, nausea, breathlessness, and insomnia, requiring
monitoring and management. Assessing and monitoring
changes in a patient’s symptoms can pose considerable difficulties for clinicians. However, it is widely accepted that impeccable symptom assessment is required if good symptom
management is to be achieved.1 In response to this concern, a
number of palliative care–specific assessment tools have been
developed, including a number of patient self-report rating
scales for symptom assessment, most of which report sound
psychometric properties.2–4 Although the empirical literature
describes the use of these instruments for research purposes,
less has been written about the extent to which these tools
have been adopted for use in clinical practice. The purpose of
this article is to describe the development and testing of one
such tool suitable for both clinical and research purposes, the
Symptom Assessment Scale (SAS).
The most commonly used of such instruments is the Edmonton Symptom Assessment Scale (ESAS), which has been
P
used extensively in clinical and research settings. Two recent
reviews showed that the ESAS is a reliable symptom assessment tool, although there is a need for further validity testing
to support use of the ESAS in a variety of settings.5,6 Chang
and colleagues7 also noted that some patients found it difficult
to understand and complete the visual analogue scales of the
ESAS. A more recent study on the routine use of the ESAS8
reported challenges such as lack of clarity about frequency of
assessments and difficulty interpreting the symptom rating
scale. The Memorial Symptom Assessment Scale (MSAS) is a
patient-rated instrument that captures patient-rated severity,
frequency, and distress associated with 32 highly prevalent
physical and psychological symptoms. In its complete form it
can be time consuming to complete.9
Other instruments are also described in the literature. The
Support Team Assessment Schedule (STAS) consists of 17
items that are used to evaluate a wide range of patient, family,
and service issues.3 With the exception of pain and anxiety, all
other symptoms are aggregated under one item labelled
‘‘symptom control.’’ This limits the sensitivity of the tool in
terms of identifying and measuring distress caused by a
specific symptom and the evaluation of interventions targeted
1
Western Australian Centre for Cancer and Palliative Care, Curtin Health Innovation Research Institute, Curtin University, Perth, Western
Australia, Australia
2
School of Nursing, The University of Notre Dame Australia, Fremantle, Australia.
3
School of Nursing and Midwifery, Curtin University, Perth, Western Australia, Australia.
Accepted October 14, 2010.
315
316
at that symptom. Hearn and Higginson10 developed the Palliative Care Outcome Scale (POS), which assesses physical
symptoms (pain and other symptoms together) and psychological, spiritual, and practical domains. However, the authors concede that future development of POS should
incorporate more symptom information, notably about nausea, weakness, and breathlessness.
The Symptom Distress Scale (SDS) was developed by
McCorkle and Young11 to assess subjective experiences of distress. The SDS examines the distress caused by 10 common
symptoms, measured on a scale of 1 to 5, with ‘‘1’’ indicating little
or no distress and ‘‘5’’ indicating great distress. The instrument
was tested with a group of cancer patients and a group of individuals who had experienced a myocardial infarction. The tool
demonstrated acceptable reliability and validity estimates and
was found to be brief and relatively simple to administer. Since
then the tool has undergone minor revisions and has been
tested with patients with cancer in a variety of settings.12–18 This
instrument continues to be used for measuring symptoms in
research settings,19–21 but there are less data about its usefulness
as a clinical tool. An adapted version, the Adapted Symptom
Distress Scale-2, has also been used in the research setting.22,23
The development of the Symptom
Assessment Scale (SAS)
Kristjanson and colleagues24 undertook a multisite study to
pilot test the SDS with the primary aim of determining the
extent that the tool would be appropriate for application in the
Australian cancer care context. Results from this pilot work
suggested the tool was useful; however, some changes were
required to simplify the instrument and also adapt it to make
it more culturally appropriate to the Australian population.
Modifications included the removal of items related to mobility, mood, concentration, and appearance. One item relating to breathing problems was added.
The revised instrument was labelled the Symptom Assessment Scale (SAS) (see the Appendix). It comprises the
following seven items: pain, insomnia, nausea, bowel problems, appetite problems, breathing problems, and fatigue.
Patients rate the degree of distress associated with the
symptom using a 0 to 10 Likert-type verbal rating scale with
zero being no symptom distress experienced, ‘‘1’’ being minimal symptom distress, and ‘‘10’’ being the worst possible
symptom distress. The time frame for rating the symptoms is
in the past 24 hours. Clinicians can add other symptoms experienced by each patient as appropriate. The instrument is
structured to allow either the patient, family member, or
nurse to assess the symptoms.
Although frequent assessment of physical symptoms is a
necessary and routine practice, the suitability of frequent
assessment of psychological well-being of patients was pretested and found in the pilot study to be intrusive. Patients
indicated that they were willing to provide information about
physical symptoms (e.g., pain, nausea) because something
could be offered to assist with these symptoms. However, to
inquire about their feelings such as depression on a daily
basis was inappropriate and upsetting. Advice provided indicated that this type of question might be better addressed in
a different way, allowing more time for discussion about
feelings with a staff member with whom they had a closer
relationship. This finding may reflect cultural perspectives
AOUN ET AL.
with respect to the context within which discussions of psychological issues occurs. A survey of symptom assessment
tools used in Australian services found that 28% of services
used the SAS compared with 14% that used the ESAS and 2%
that used the MSAS (the rest using unvalidated tools),
and both ESAS and MSAS include questions related to psychological distress.25
This article reports the reliability and validity testing of the
SAS, a short patient-rated scale of symptom distress that is
widely used in Australian clinical palliative care settings both
as a clinical tool and for monitoring the quality of care provision.26–28 Although the SAS was developed in 1999 and extensive testing of the instrument was undertaken at that time,
the results of the testing were never published in a peerreviewed publication. This article reports the findings from the
original testing procedures that were completed in 1999 and
analysed further in 2009 and provides information regarding
the ongoing use and testing of the SAS in subsequent studies.
Testing of the SAS
The following questions were addressed:
1. To what extent does the SAS demonstrate internal
consistency reliability?
2. To what extent does the SAS demonstrate stability over
time?
3. To what extent does the SAS demonstrate construct
validity?
4. To what extent does the SAS demonstrate sensitivity to
changes in patient’s condition over time?
Approval to conduct this study was obtained from the human
research ethics committees of Edith Cowan University and
each study setting. The study was undertaken between
January and December 1998 and documented in a report in
1999.24
Methods
Sample and setting
A consecutive sampling of mainly cancer patients receiving
palliative care in five services in Perth, Western Australia over
a 12-month period was obtained. These services were all
major services existing at the time of the study. This population was selected because of the high incidence of symptom
distress associated with palliative care. Hence, the sample was
able to provide useful data regarding the consistency, stability
over time, and construct validity of the instrument.
Participants were recruited from five palliative care services
covering three different settings: consultative palliative care
services (n ¼ 2), inpatient palliative care units (n ¼ 2) and home
care service (n ¼ 1). The inpatient units had a combined total of
48 beds, with an occupancy rate of approximately 90%. The
home care service provided palliative care to patients
throughout the metropolitan area of Perth, both in the home
and in residential aged care settings, with an ongoing caseload
of approximately 400 patients. The two consultative palliative
care services received approximately 12 new referrals per week.
Symptom assessment was performed daily for each patient
by the bedside nurse and recorded on a Symptom Assessment Recording Form. Training was undertaken to ensure
MEASURING SYMPTOM DISTRESS IN PALLIATIVE CARE
consistency in administering the tool. Patients were asked to
assess the degree of distress they were experiencing with respect to seven symptoms of the SAS. Patients indicated verbally, or by pointing to the number on the scale, the level of
severity of symptom distress. SAS scores were reported for
each patient on at least five occasions, allowing for testing of
sensitivity of the SAS to changes in symptoms over time.
Statistical analyses
Descriptive statistics were used to describe the sample in
terms of demographic characteristics, clinical characteristics,
and symptom distress variability.
Internal consistency reliability was assessed using Cronbach’s standardized a coefficient. A criterion of at least 0.70
was preset as the minimum for internal consistency, which is
considered acceptable for a newly developed instrument.29 As
well, Carmines and Zeller30 suggested that 50% of item-tototal correlation should be between 0.40 and 0.70. Scores
above 0.70 indicate redundancy of items, and scores below
0.40 indicate that the item may not contribute information
about needs parallel with other scale items.
The intraclass correlation coefficient was used to determine
stability of the SAS over time. This statistic allowed for an
assessment of the extent of agreement across the two time
points while correcting for possible chance agreement. A
correlation of at least 0.70 was preset as the criterion for satisfactory test-retest reliability.29
Construct validity was evaluated using the ‘‘known group
validity’’ technique and was assessed by comparing symptom
assessment scores of patients with different cancer diagnoses.
An analysis of variance (ANOVA) was used to test for differences in the Time 1 (T1) scores with a Sheffe post hoc test
used to test for statistical differences between the groups,
based on comparisons of scores across cancer diagnoses
known or hypothesized to score differently. We hypothesized
that the SAS would be able to discriminate individual
symptom distress scores between patients with different
cancer diagnoses. For example, we hypothesized that patients
with lung and head and neck cancers would have higher
distress scores for breathing than patients with other cancer
diagnoses. Likewise, patients with breast cancer would have
higher pain scores than patients with other cancers.
A repeated measures general linear model was used to
determine the sensitivity of the SAS to changes in symptom
scores over five time points. This was an important requirement to determine whether the SAS was a useful tool that
could be used in the clinical setting to detect expected changes
in a patient’s condition over time. For example, it was hypothesized that distress related to pain would decrease over
time as the palliative care team implemented effective
symptom management of this problem.
Results
Sample characteristics
We recruited 572 patients from five different palliative care
specialist services in Western Australia. Data from 18 recruited participants were not included in the analysis for the
following reasons: patient was deceased prior to data collection (n ¼ 8), no submission of data (n ¼ 7), patient was diagnosed as terminal after recruitment (n ¼ 1), patient was
317
discharged prior to data collection (n ¼ 1), or the patient decided not to participate (n ¼ 1). (See Table 1.)
Clinical characteristics
A wide range of cancer diagnoses were included in the
sample; most patients had metastatic disease and had undergone some form of cancer treatment, and 22% continued to
have active treatment. Only 5% of patients had a diagnosis of
nonmalignant disease. (See Table 2.)
Instrument Testing
Symptom intensity. (See Table 3.)
The possible SAS score range for each symptom was 0 to10
(0 ¼ no problems to 10 ¼ worst possible problem). The range
of mean SAS scores was 2.30 (nausea) to 5.83 (fatigue).
Internal consistency. The SAS achieved an internal
consistency estimate as measured by Cronbach’s a of 0.62
( p < 0.001) using T1 SAS scores. This estimate was just below
the preset criterion of 0.70 and indicated a moderate degree of
internal consistency. The total score on the SAS was also
correlated with each symptom score. All seven symptoms
(100%) achieved item-to-total correlations between 0.40 and
0.70. This was well above the preset range of at least 50% of
items within this range.
Construct validity. (See Table 4.) As hypothesized, patients with breast cancer had the highest scores for appetite
problems, nausea, bowel problems, and pain of any cancer
group. Patients diagnosed with lung cancer had higher
breathing scores than other cancer groups. Post hoc tests
showed patients with head and neck and lung cancers
had significantly higher breathing scores than patients diagnosed with colon cancer ( p ¼ 0.005), leukemia ( p ¼ 0.001),
Table 1. Demographic Profile of Patients (n ¼ 572)
Gender
Male
Female
Age
25–60
61–70
71–80
81–98
Marital Status
Married/de facto
Never married
Divorced/separated
Widowed
Country of birth
Australia
UK
Other
Preferred language
English
Other
Palliative care service type
Consultative service
Home care service
Inpatient unit
n (%)
333 (58)
237 (42)
117
112
220
119
(21)
(20)
(39)
(21)
324
48
44
142
(58)
(9)
(8)
(25)
349 (63)
114 (21)
91 (16)
526 (92)
46 (8)
91 (16)
196 (34)
285 (50)
AOUN ET AL.
Symptom
Appetite
Bowel
Breathing
Fatigue
Insomnia
Nausea
Pain
n
Mean
SD
544
542
545
539
544
548
540
4.72
3.80
3.14
5.83
3.48
2.30
3.98
3.166
3.139
3.191
2.772
2.914
2.826
3.054
SD, standard deviation.
Other 6.16 (2.76)
Colon 5.73 (2.51)
Prostate 5.72 (2.77)
Gastric 5.67 (2.62)
Breast 5.65 (2.97)
Head/neck 5.54 (2.81)
Lung 5.46 (3.05)
Fatigue
Breathing
Lung 4.54 (3.38)
Head/neck 3.27 (3.21)
Breast 2.93 (3.09)
Colon 2.49 (3.00)
Gastric 2.46 (2.96)
Other 2.35 (2.86)
Prostate 2.31 (2.86)
SD, standard deviation.
Table 3. Mean SAS Scores for Each Symptom
Breast 4.89 (3.30)
Prostate 4.47 (3.2)
Other 4.12 (3.24)
Gastric 3.52 (3.23)
Lung 3.48 (2.96)
Colon 3.09 (3.02)
Head/neck 2.72 (2.65)
and prostate cancer ( p ¼ 0.008). Patients with gastric cancer
had significantly lower pain scores than patients diagnosed
breast cancer ( p ¼ 0.029).
There were significant differences between cancer diagnosis and bowel symptom scores (F ¼ 2.334, p ¼ 0.018),
breathing symptoms scores (F ¼ 7.540, p < 0.001) and pain
(F ¼ 4.326, p < 0.001). Post hoc tests show patients without
cancer had significantly higher breathing scores than patients diagnosed with colon ( p ¼ 0.006), gastric ( p ¼ 0.019),
genitourinary ( p ¼ 0.006), and other cancers ( p ¼ 0.006). Patients with lung cancer had significantly higher breathing
scores than patients diagnosed with colon cancer ( p ¼ 0.005),
leukemia ( p ¼ 0.001), and genitourinary cancer ( p ¼ 0.008).
Patients with gastric cancer had significantly lower pain
Breast 2.90 (3.12)
Other 2.55 (2.79)
Colon 2.4 (2.80)
Gastric 2.3 (2.99)
Prostate 2.07 (2.70)
Lung 1.79 (2.65)
Head/neck 1.72 (1.90)
(9)
(16)
(3)
(5)
(17)
(34)
Breast 5.16 (3.08)
Head/neck 4.76 (3.44)
Other 4.74 (3.27)
Colon 4.69 (3.27)
Lung 4.66 (3.04)
Prostate 4.34 (3.08)
Gastric 4.28 (3.08)
49
91
17
26
96
196
Bowel
44 (8)
67 (12)
13 (2)
Nausea
175 (31)
225 (40)
248 (44)
Appetite
(29)
(8)
(20)
(13)
(25)
Insomnia
162
43
112
73
141
Pain
n (%)
41 (7)
92 (16)
46 (8)
26 (5)
121 (21)
62 (11)
149 (26)
29 (5)
33.3
Table 4. Mean SAS Scores Ranked by Cancer Diagnosis (SD)
Primary diagnosis
Breast
Colon
Gastric
Head/neck
Lung
Prostate
Other
Not cancer
Average time since diagnosis (months)
Secondary involvement
Bone
Brain
Liver
Lung
Other
Previous treatment
Chemotherapy
Radiotherapy
Surgical
Current treatment
Chemotherapy
Radiotherapy
Surgical
Comorbidity
Arthritis
Chronic lung disease
Cognitive impairment
Neurological conditions
Symptomatic heart disease
Other
Prostate 3.67 (2.99)
Other 3.65 (2.95)
Colon 3.56 (3.07)
Lung 3.50 (2.94)
Head/neck 3.44 (2.62)
Breast 3.08 (3.02)
Gastric 2.80 (2.73)
Table 2. Clinical Profile of Patients (n ¼ 572)
Breast 5.03 (2.94)
Head/neck 4.92 (2.73)
Prostate 4.44 (2.92)
Lung 4.03 (3.14)
Colon 3.71 (2.88)
Other 3.41 (3.01)
Gastric 2.33 (2.46)
318
MEASURING SYMPTOM DISTRESS IN PALLIATIVE CARE
scores than patients diagnosed with breast cancer ( p ¼
0.029).
319
Table 6.
Sensitivity of SAS Over Time
F
sig
3.811
2.092
2.205
1.155
3.833
5.090
10.252
0.005
0.084
0.070
0.332
0.005
0.001
<0.001
Stability over time. (See Table 5.) A subsample of patients participated in the test-retest reliability assessment
(n ¼ 60). Participants completed the SAS at T1 and 2 hours
later at time two (T2). This time frame was chosen to
minimize variations in symptom distress over time, allowing testing of the reliability of the instrument. Research staff
also confirmed that no pain medication or symptom intervention was administered during this time interval. Results
indicated a significant level of agreement among participants ranging from r ¼ 0.84 for nausea and breathing to
r ¼ 0.94 for pain.
Symptom
Appetite
Bowel
Breathing
Fatigue
Insomnia
Nausea
Pain
Sensitivity to change over time. (See Table 6.) Repeated measures over five time points demonstrated the SAS
is sensitive to changes in symptom distress over time as
shown in the symptoms of appetite, insomnia, nausea, and
pain. Bowel symptoms, breathing, and fatigue scores did not
change significantly over time. The average time between
symptom assessments was 2.35 days, ranging from 1.4 to
17.1 days.
specific to the cancer type. Our construct validity using
known group comparisons demonstrated differences in
symptom distress scores among different cancer diagnostic
groups.
This study also provided information about the incidence
and intensity of symptom distress in people with advanced
cancer in a variety of inpatient and outpatient settings.
With respect to appetite, breathing, bowel, fatigue, insomnia, nausea, and pain symptoms assessed in this study,
the most striking finding is that participants experienced
multiple symptoms. This is expected given that people with
advanced cancer may have a number of coexisting morbidities and metastatic disease. Overall, symptoms were
more prevalent in the diagnostic groups of lung and bowel
cancer.
Family members and nurses can be included as SAS
assessors to avoid exclusion of the group of patients who
may be unable to respond themselves and yet are perhaps
those that may benefit most from measuring levels
of symptom distress. The role of caregivers, particularly
in home care, and the need for them to be educated
regarding symptom distress is acknowledged through their
inclusion as assessors. Research has shown that family
members, followed by nurses, are most accurate in their
estimates of patients’ levels of symptom distress.16,31,32
Use of the SAS was found to facilitate communication
among patients, family members, nurses, and doctors by
providing a common and consistent language for reporting
symptoms. Further testing of the SAS in nonpalliative
populations such as patients in early stages of the cancer
illness trajectory and individuals with other chronic diseases would be useful.
Since this study, the SAS has formed the basis for ongoing
research work including the Navigate Care Model.33 Toye
and colleagues26 tested the SAS with residents in aged care
facilities and found the SAS provided a brief but comprehensive overview of symptom distress that may prompt additional in-depth assessment. The SAS was considered a valid
measure in frail aged people able to provided self reports.
Lewin and colleagues,27 in a study of home-based palliative
care, report the SAS as being useful for providing symptom
data that can be used to audit care against established
standards, to compare services and to inform funders or
purchasers.
At present, the SAS is being used by palliative care services across Australia involved in the Palliative Care Outcomes Collaborative (PCOC). PCOC is a voluntary quality
Discussion
This study tested the SAS in a variety of Western Australian
palliative care settings: inpatient, consultative, and community based. Results indicate the SAS is easy to administer, in
terms of its brevity and the short time required to administer it
and with minimal missing data. It is likely to be a useful tool to
guide clinical care. The SAS does not provide an in-depth
assessment of individual symptoms, but serves as a screening
tool to identify troublesome symptoms that warrant more
attentive and immediate clinical investigation and comprehensive assessment.
Internal consistency reliability and stability over time of the
SAS were found to be acceptable. The SAS demonstrated
construct validity by discriminating changes in expected
symptoms among patients with different cancer diagnoses.
The SAS also demonstrated sensitivity to detect changes in
symptom distress over time.
The variation in internal consistency as measured by
Cronbach’s a suggests the different symptoms assessed by
the instrument are not necessarily correlated in this population. This is expected because each cancer type and related treatment cause comorbidities and symptoms that are
Table 5. Symptom Test-Retest Reliability
Symptom
Appetite
Bowel
Breathing
Fatigue
Insomnia
Nausea
Pain
n
r
p
60
59
59
60
60
60
60
0.92
0.90
0.84
0.87
0.92
0.89
0.94
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
SD, standard deviation.
320
AOUN ET AL.
initiative that aims to assist palliative care services to
measure the standard and quality of care.28,34 To achieve
this, consideration is given to the domains that will provide
useful outcome measures for clinicians and the tools that
best measure these outcomes. SAS has been chosen to
routinely collect clinically meaningful data about patient
physical symptoms because an extensive review of assessment tools25 showed that the SAS met the following
criteria, compared with other symptom assessment tools
mentioned at the start of this article: validated, efficient,
and accurate in assessing patients; acceptable to patients
and health care professionals; stable over time and quick to
use; uses appropriate terminology and is easily understood
by patients and family caregivers; suitable in the Australian
context; balances the need for clinical use and research use;
and able to be used across a number of care settings and
with a variety of populations. It should be noted that it is
also important to screen for psychological symptoms by
using a complementary tool, but this is outside the scope of
this study to describe.
Conclusion
This study has shown the SAS to be a reliable and valid
method of symptom assessment that is brief, easy to use, and
can be used in a variety of palliative care settings. The use of
the SAS on a regular basis is recommended to assess patient
symptoms, allowing a timely response to distressing symptoms. This formalized regular approach to symptom assessment may improve the treatment response time, enhancing
patient care. The development of an assessment tool that can
be used across a number of care settings will benefit cancer
patients by providing a system of assessment that is universally accepted and utilized, and one that is easily understood
by the patients and family caregivers.
Appendix. Symptom Assessment Scale (SAS)
Circle the number that best matches your experience
No
problem
Insomnia
Appetite
problems
Nausea
Bowel
problems
Breathing
problems
Fatigue
Pain
Worst possible
problem
0
1
2
3
4
5
6
7
8
9
10
0
0
1
1
2
2
3
3
4
4
5
5
6
6
7
7
8
8
9
9
10
10
0
1
2
3
4
5
6
7
8
9
10
0
0
0
1
1
1
2
2
2
3
3
3
4
4
4
5
5
5
6
6
6
7
7
7
8
8
8
9
9
9
10
10
10
This scale measures how severe your distress or discomfort is,
relating to each problem in the past 24 hours.
Acknowledgments
The authors would like to acknowledge the clinicians who
participated in this study: Dr. Sarah Pickstock, Dr. Kevin
Yuen, Sue Davis, Jo Blight, Annette Cummins, and Ellen
Nightingale.
Author Disclosure Statement
No competing financial interests exist.
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Address correspondence to:
Samar M. Aoun, B.Sc.(Hons), M.P.H., Ph.D.
Western Australian Centre for Cancer and Palliative Care
Curtin Health Innovation Research Institute
Curtin University
GPO Box U1987
Perth, Western Australia 6845
Australia
E-mail: s.aoun@curtin.edu.au