Journal of Cancer Therapy, 2012, 3, 406-411
http://dx.doi.org/10.4236/jct.2012.324053 Published Online September 2012 (http://www.SciRP.org/journal/jct)
Patient, Provider and System Factors Impacting on the
Diagnosis and Management of Lung Cancer Care in
Australia
Moyez Jiwa1, Patricia M. Davidson2, Phillip J. Newton2, Michelle L. DiGiacomo1,2, Sarah J. McGrath2,
Cornelius J. Lotriet1
1Curtin Health Innovation Research Institute, Curtin University, Perth, Australia; 2Centre for Cardiovascular and Chronic Care, Fac-
ulty of Health, University of Technology Sydney, Sydney, Australia.
Received April 30th, 2012; revised May 31st, 2012; accepted June 20th, 2012
ABSTRACT
Background: Lung cancer is the leading cause of cancer death in Australia, with only modest improvements in survival.
This study aims to identify factors impacting on diagnosis and management of lung cancer with particular reference to
Australian primary care. Methods: A sequential mixed method modified approach employing interview and a two-
phased survey techni q ue. Fol l owing telepho nic inter vi e ws wit h 31 heal t h pr ofessionals (individuals represent i n g general
practitioners, specialized physicians, nurses and allied health practitioners), interview data was analysed using qualita-
tive thematic analysis, and surveys using descriptive statistics. Emergent themes were organised under patient, provider
and system factors. Interviews ceased upon saturation of data. Results: Multiple patient, provider and systems issues
were seen to contribute to adverse health outcomes. There is a strong relationship between smoking and outcomes, and
factors related to higher smoking rates such as a lower socioeconomic status. For smokers, guilt and/or denial was con-
sidered a reason for delay in the decision to seek medical care for cough or shortness of breath. Aboriginal people un-
der-report morbidity related to smoking and chronic obstructive pulmonary disease; other patients fail to recognise the
significance of their symptoms. Discussion: Despite the poor prognosis of lung cancer diagnosis, increased awareness
of presentation and treatment options can address d isparities in health outcomes.
Keywords: Lung Cancer; Primary Care; General Practice; Survival Diagnosis
1. Introduction
Lung cancer is the leading cause of death due to cancer
in Australia. In 2005 there were 4711 deaths as a result
of lung cancer [1]. It is currently the second leading
cause of all deaths in men, and although incidence and
mortality rates of lung cancer are declining in men, there
are increasing rates in women [1]. Also of concern are
the higher rates of lung cancer present in Indigenous
Australians and those from socioeconomically deprived
groups.
Except for short-term survival after a diagnosis of
small cell lung cancer, the prognosis for patients with
lung cancer has not greatly improved over recent decades
[2]. Between 1998 and 2004 only 12% of people with
lung cancer survived five years [3,4]. As the population
ages it is likely that the incidence of lun g cancer will rise
among older people [5]. In response to the increasing
disease burden, there have been modest improvements in
diagnosis, management and models of care delivery for
lung cancer [6-8]. Due to the absence of screening me-
thods, most patients with symptoms will consult a gene-
ral practitioner or other primary care health professional
before they are referred for specialist advice. The role of
primary care professionals is essential at all levels of
cancer care—from prevention and diagnosis through to
palliation [9]. The ongoing relationship between patients
and primary health care professionals provides the op-
portunity to assist patients and the families of those with
lung cancer, and achieve the best possible outcomes.
The objective of this study was to identify factors that
impact on the diagnosis and management of lung cancer
with particular reference to Australian primary care.
2. Methods
This study used a mixed method approach. The benefit of
using such an approach is that it allows for a broader,
more inclusive approach accommodating a diverse range
of opinions and addresses the limitations of traditional ap-

Patient, Provider and System Factors Impacting on the Diagnosis and Management of Lung Cancer Care in Australia 407
proaches [10]. The first part of the study included inter-
views with expert clinicians (n = 31). This was followed
by two national, online surveys of health professionals.
For the interviews, members of the research team iden-
tified expert participants (n = 31) on the basis of exper-
tise, availability and clinical leadership roles. The parti-
cipants included respiratory physicians (n = 6), medical
oncologists (n = 4), palliative care specialists (n = 4),
general practitioners (n = 4), individuals working within
cancer policy implementation (n = 3), Aboriginal health
care workers (n = 3), public health physicians (n = 2),
care coordinators (n = 2), a radiologist, a surgeon and a
dietician. Length of consultations varied from 10 minutes
to 45 minutes. Detailed notes taken at each consultation
were analyzed using qualitative thematic analysis [11,
12]. Interviews ceased when there was saturation of data.
Participants in the two national, online surveys (Sur-
vey 1 and 2), were recruited by snowball sampling to
ensure both broad coverage of health professionals, and
national coverage using professional networks and a
commercial distribution network. The survey was admi-
nistered using a secure online platform. A targeted sam-
pling method achieved representation from every state
and territory, and representation across both the public
and private health sectors. Item generation for the sur-
veys was undertaken by a comprehensive literature re-
view of published and grey literature, whilst questions
were designed to elicit both barriers and facilitators to
cancer care in Australia, and respondent’s level of agree-
ment to statements. The majority of questions were
framed in a Likert score framework, with higher scores
identifying a higher level of agreement.
3. Results
Survey 1 received 154 responses with a completion rate
of 74.7% (137 respond ents were included in th e analysis).
Not all respondents completed all questions, and correc-
tion for missing data was not undertaken as part of the
analysis. Survey 2 elicited strategies to improve lung
cancer care; 150 responses were received, with a com-
pletion rate of 73.3%. The thematic analysis of inter-
views are presented as either patient, provider or system
factors, as these have been identified as integral to driv-
ing health care reform [12]. Findings from the consulta-
tion process are summarized below under patient, pro-
vider and systems factors. In this study, we defined pa-
tient factors as those that influence patients’ health-
seeking behaviors and treatment adherence. Provider fac-
tors influence the capacity of health professionals to pro-
vide lung cancer services. System factors impact on the
ability to provide and coordinate lung cancer services.
3.1. Patient Factors
Many of the contributing factors to variations in man-
agement and outcomes in lung cancer are a function of
patient circumstances and/or understanding. Socioecono-
mic facto rs exert a strong er influenc e in lung cancer th an
in most diseases due to smoking rates being higher in
lower socioeconomic groups and among Aboriginal Aus-
tralians. The issue of guilt arose throu ghout the consulta-
tions—for those who have smoked or who currently
smoke, guilt can delay the decision to seek medical care,
whilst shame resulting from failure to stop smoking is an
important reason why individuals do not act on symp-
toms such as cough or shortness of br eath.
Three experts considered that the Aboriginal popula-
tion under-reported their morbidity related to smoking
and chronic obstructive pulmonary disease (COPD). One
Aboriginal health worker commented that “[There is]
still a lot of racism in the system. It puts people off get-
ting treatment. People feel shamed”. In addition, the ex-
pert participants suggested that lung cancer is not always
seen as a treatable health issue within the Aboriginal
community and amongst primary healthcare profession-
als. One general practitioner from an Aboriginal medical
service commented that “Patients present too late, and
sometimes they are already expecting the answer be-
cause they see it as smoking related”.
The high symptom burden associated with these, and
also with functional decline and physiological changes in
ageing, means that patients may fail to recognize the sig-
nificance of their symptoms. Communication issues were
also identified as patient factors contribu ting to variations
in management. One dietician surveyed felt there existed
a “need for more guidelines and marketing to patients
and families”.
In identifying patient factors impacting on the role of
primary care in lung cancer diagnosis and management,
the respondents emphasized:
 Targeting high risk groups to increase awareness of
lung cancer in the absence of a valid and reliable
screening test for lung cancer.
 Developing and testing models of intervention that
empower consumers at high risk to monitor their
health status for changes in symptoms.
 Informing professionals of the need to approach the
discussion of smoking in clinical consultations as a
strategy to decrease stigma associated with lung can-
cer and smoking.
 Providing access to care coordinators or lung cancer
nurses to assist the patient in navigating the health
care system.
3.2. Provider Factors
The small number of individuals with lung cancer pre-
senting to an individual practitioner in primary care
means that health professionals can be less attuned to the

Patient, Provider and System Factors Impacting on the Diagnosis and Management of Lung Cancer Care in Australia 408
likelihood of lung cancer. Several GPs in this study
stated they did not see lung cancer in their practice, and
one acknowledged that “…I guess I am less switched
onto it”. This issue was also raised by a medical oncolo-
gist who commented that “physicians [are] not switched
on to lung cancer”. Similarly, a GP working in an Abo-
riginal medical service believed there should be an in-
creased emphasis on considering the possibility of lung
cancer in chronic care programs and adult health checks.
Co-morbidity is highly influential as a provider factor.
Symptoms such as cough and dyspnea are more likely to
be attributed to COPD, CHD and CHF than lung cancer.
The consultations also elucidated provider factors in-
cluding perceptions of nihilism and reluctance to refer to
specialist providers. Experts stated that some health pro-
fessionals may not be aware of the benefits of lung can-
cer treatment; as a consequence, they may be reluctant to
refer patients for specialist treatment. One medical on-
cologist commented that: “Amongst some clinicians there
is a perception of nihilism regarding treatment deci-
sions”.
The majority of respondents identified the need for
improved diagnostic and technical solutions to improve
care. Expert participants stated that although guidelines
existed, there was less emphasis on risk assessment fa-
cilitating an early diagnosis. When asked to identify
where clinical guidance materials would have the great-
est impact, all areas identified received strong support,
particularly during investigations leading to early diag-
nosis, guidelines for the diagnosis and staging, and out-
comes for measuring the quality of lung cancer care.
3.3. System Factors
Respondents hinted at difficulties with access to timely
diagnostics and treatment. Expert participants contend
that a delay of up to four months in receiving treatment
could occur, particularly in remote locations, although
the reasons for reported delays were not confined to
regional and remote centres. These delays are of concern
in a condition with such a poor prognosis. One medical
oncologist commented, “By the time the patient gets to
the GP, the chest X-Ray gets reported, the patient goes
back to the GP then goes to the respiratory physician
who orders more tests, waits for the PET scan, then waits
for a review appointment and then has a biopsy sche-
duled, weeks and sometimes months march on”. Another
commented “I have one patient who had three admi-
ssions to the emergency department with shortness of
breath. Abno rmal find ings were n o ted on the ch est X-Ray,
but they still didn’t get to the right specia list—and this is
in a capital city”.
A limited role for general practitioners in the treatment
of patients with lung cancer was perceived. The role of
primary care generally was seen as mainly focused on the
coordination of care early in the patient trajectory,
particularly with regard to ensuring that patients were
being managed in a team approach. Systems and per-
sonnel that promote coordination, particularly lung can-
cer nurses and care coordinators, were endorsed as
helpful in ensuring timely treatment. One medical on-
cologist commented that “multiple providers, multiple in-
vestigations can lead to delays in diagnosis”. One radi-
ologist maintained th ere is a “need for systematic follow-
up of abnormal chest x-rays”. This statement implies that
systems for follow up are not in place.
3.4. Strategies to Improve Outcomes
A number of strategies to improve lung cancer care were
identified by participants reflecting the three themes—
patient, provider and system. These are provided in order
of frequency of responses in Table 1.
4. Discussion
In Australia, major obstacles to achieving improvements
in outcomes for lung cancer remain, whilst primary care
professionals are faced with multiple challenges. As
noted during consultations, patient trajectory prior to
entry into the health care system is reported to be highly
variable. Experts in this study, however, suggested that
once a correct diagnosis is made and lung specialists are
engaged, there is less variability in management. Not-
withstanding these observations, the respondents implied
that there are unacceptable variations in lung cancer out-
comes in Australia. Overall, as is noted by others, late
presentation is the leading patient factor contributing to
adverse health outcome s [13-15].
Table 1. Strategies to decrease variation in lung cancer out-
comes.
Strategy Frequency of
response (n)
Educational initiatives for general practitioners
with strategies to increase the awareness and
recognition of symptoms 72
Referral and access to multidisciplinary teams
(MDTs) to assis t in diagnosis, staging and treatment 65
Evidence based guidan ce to promot e timely
investigation and diagnosis of lung cancer 52
Strategies to increase public awareness of lung
cancer, diagnostic strategies and available therapies 51
Recommendations to assist clinicians in monitoring
patients with ongoing symptoms when investig ations
do not initially confirm lung cancer 37

Patient, Provider and System Factors Impacting on the Diagnosis and Management of Lung Cancer Care in Australia 409
4.1. Patient Factors
Consumer issues in lung cancer care are complex and are
linked to physical, social, psychological and sociodemo-
graphic characteristics [16,17]. As reflected in interviews,
the literature also emphasizes that presentation for treat-
ment of lung cancer may be influenced by guilt associ-
ated with smoking, and this may be reflected in varia-
tions in lung cancer management, particularly in Indige-
nous Australians [15-20]. Notably, lung cancer incidence
is significantly higher in the Indigenous population than
in the non-Indigenous population in the 50 - 64 year age
groups in the Northern Territory, Western Australia and
South Australia [21]. Across all three jurisdictions, In-
digenous populations had higher rates of smoking than
the non-Indigenous populations [22]. A number of fac-
tors were identified as contributing to Indigenous Austra-
lians presenting late and, as a result, having a poor prog-
nosis, with a very small proportion receiving treatment.
This is consistent with literature recommending that,
given the cultural diversity of Australia and high rates of
smoking in some population groups, targeted culturally
sensitive health information is required [21]. Pre-diag-
nosis barriers include knowledge of risk [13]. Factors of
co-morbidity are also highly influential as reasons for
late presentation by patients. Lung cancer is more com-
mon in older people, many of whom have multiple co-
morbid conditions [23,24]. Cough and dyspnea are sym-
ptoms commonly associated with smoking-related condi-
tions such as COPD, coronary heart disease (CHD) and
chronic heart failure (CHF) which may lead to dismissal
of persistent symptoms.
4.2. Provider Factors
There are limited Australian data addressing specific
provider factors impacting on diagnosis, referral and
treatment—including thresholds for referral, follow-up
after normal chest x-ray whether symptomatic or asymp-
tomatic, knowledge of multidisciplinary teams (MDTs)
and beliefs about the value of cancer specific treatment
of lung cancer. However, reflecting the crucial role of the
general practitioner (GP) as the gatekeeper to specialist
services and early diagnosis [22], the role of the GP in
monitoring individuals at high risk and facilitating the
correct diagnosis was emphasized in this consultation of
stakeholders. The reflections on nihilism are also consis-
tent with the literature [25]. Compared to other cancers
such as breast and bowel, there are minimal lung cancer
education and training activities offered to primary care
professionals [26]. Initiatives must therefore be devised
that increase the awareness and knowledge of lung can-
cer amongst primary care professionals. GPs in particular
need to be encouraged to ex plore th e possibility of a lung
cancer diagnosis.
With regard to access to treatment, the comments in
the consultation are co nsistent with data ind icating that in
some instances, there is less than optimal access to treat-
ment, and that reorganization of the health care system
can afford benefits [27-29]. Consistent with this, a series
of studies undertaken in NSW describ es less than optimal
use of radiotherapy, with the optimal utilization rate be-
ing between 45% and 68% at initial diagno s is [30].
4.3. Systems Factors
The major focus of recommendation for a systems ap-
proach was the emphasis on guidelines. These comments
are reflected in the literature in which others have shown
that developing clinical practice guidelines, augmented
by implementation and monitoring strategies, can afford
benefits [31,32]. An integrated mechanism of data man-
agement and monitoring must also occur at the systems
level—this mechanism must be closely linked to clinical
governance strategies.
Further guideline development for lung cancer care
must occur with close consultation with not only health
professionals, but non-governmental groups and consum-
ers too. The data obtained indicated that, at a systems
level, there must be continuing support and system-wide
strategies to decrease smoking. Given the role smoking
campaigns and media portrayals can play in increasing
anxiety and stress [19], smoking campaigns must take
into consideration the role of guilt and stigma and the
consequences this can have on an individual.
Throughout the consultations, the importance of care
and coordination associated with lung cancer manage-
ment was underscored as being important. There is also
increasing importance being placed on the role of mul-
tidisciplinary teams (MDTs) in lung cancer care [33,34].
Incentives must be provided and barriers reduced to al-
low primary care professionals to participate in MDTs.
This will allow the increased coordination of care and
monitoring of outcomes. For primary care professionals,
challenges lie ahead in providing effective and beneficial
healthcare across the private and public sectors.
4.4. Strengths and Limitations
Issues relating to sampling and measurement bias must
be acknowledged, although all attempts were made to
ensure a broad representation of opinion and geographic
representation. Within the time and resources available,
the team failed to engage a sufficiently large cohort of
consumers with lung cancer to draw robust conclusions
about their experience. Therefore, the views of consum-
ers are not represented in this report. In spite of these
limitations, this study provides a comprehensiv e descrip-
tion of factors impacting on lung cancer care in Australia
from the provider perspective, and offers critical infor-

Patient, Provider and System Factors Impacting on the Diagnosis and Management of Lung Cancer Care in Australia 410
mation to inform health services planning.
In conclusion, with the Australian health care system
in a phase of dynamic health care reform, this study has
identified a number of issues related to outcomes for lung
cancer that may be encompassed within a reform agenda
[35,36]. This study has identified patient, provider and
system factors conspired to adversely impact on lung
cancer outcomes. In order to meaningfully address the
timely diagnosis and management of lung cancer, inter-
ventions need to address entrenched health disparities
and more actively involve primary care professionals in
identification and th e coordination of care.
5. Acknowledgements
This paper is part of a larger project entitled Lung Can-
cer in Australia : Review of the Evidence, Consultation &
Research. This project received funding from the Austra-
lian Government through Cancer Australia.
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