Primary Care Physicians’ Perspectives of Their Role in Cancer Care: A Systematic Review
KEY WORDS: cancer; primary care; care management; physician
satisfaction; care transitions.
J Gen Intern Med
Primary Care Physicians' Perspectives of Their Role in Cancer Care: A Systematic Review
Renae A. Lawrence 0 1
Jordana K. McLoone
B Psych 0 1
Claire E. Wakefield
Masters in Public Health
B Psych 0 1
Richard J. Cohn
FRACP 0 1
0 Kids Cancer Centre, Sydney Children's Hospital , Randwick, NSW , Australia
1 School of Women's and Children's Health, UNSW Medicine, University of New South Wales , Sydney, NSW , Australia
s for full-text review, abstracted data and performed a quality assessment. RESULTS: Thirty-five articles representing the perspectives of 10,941 PCPs were captured. PCPs' confidence to provide care varied according to cancer phase (e.g. treatment versus survivorship), care domain (e.g. acute medical care versus psychological late effects), and disease prevalence (e.g. breast malignancies versus childhood c a n c e r s ) , w i t h p r e f e r e n c e s f o r s h a r e d - v e r s u s independent-care models varying accordingly. Barriers included a lack of timely and specific information/ c o m m u n i c a t i o n f r o m o n c o l o g i s t s a n d l i m i t e d knowledge/lack of guidelines, as well as lack of time, remuneration and patient trust. LIMITATIONS: The data was limited by a lack of consideration of the preferences of patients and oncologists, leading to uncertainty about the acceptability and feasibility of suggested changes to cancer care. DISCUSSION: PCPs appear willing to provide cancer care for patients/survivors; however, they report barriers and unmet needs related to providing such care. Future research/interventions should take into account the preferences and needs of PCPs.
Improved screening, early diagnosis, treatment, and an aging
population, have led to an increase in the number of people
living with or surviving cancer, with prevalence and survival
estimates projected to continue to increase dramatically in
future decades.1,2 Lifetime probability rates for diagnosis of
an invasive cancer are up to 45 % for men and 38 % for
women,3 and, for many cancer types and stages, five-year
survival rates have increased for both adult and childhood
cancers,3,4 resulting in increased pressure being placed on
health-care systems at all stages of the cancer care continuum.
In addition to the acute effects of primary disease and
treatment, health professionals must also meet the needs of
survivors who remain at risk of relapse, development of a
second cancer,5,6 and long-term morbidity related to the
physical and psychosocial late effects of their disease and/or its
treatment.7,8 Providing care for childhood cancer survivors is a
particular challenge, as approximately two-thirds will
experience chronic late effects9 during survivorship periods, which
will, on average, span six decades.10,11 Additionally, health
professionals must also meet the needs of aging cancer
survivors who are at increased risk of comorbid disease and
increased health-care service utilisation.12,13
Oncologists located at tertiary hospitals have traditionally
provided the majority of cancer treatment and routine
followup for patients with cancer.14–16 However, workforce
shortages in oncology, combined with an exponentially increasing
number of cancer survivors, reduced the sustainability of a
specialist-based model of care.17 Some researchers predict that
there will be insufficient oncologists to meet the needs of
cancer patients and survivors in the future, with demand
predicted to rise 48 % between 2005 and 2020.18
Oncologist-led follow-up is expensive, with other models
of care, such as primary care based management,
demonstrating greater cost-effectiveness than hospital-based alternatives,
with minimal variation in key outcomes documented for breast
cancer patients.14,15,19,20 Oncologist-led care presents
additional challenges, including difficulties in maintaining
patient-oncologist contact as survivors transition through
life-phases (for example, childhood cancer survivors, who
may have more than six decades of life expectancy ahead, may
move away from home and their treating hospital to pursue
tertiary study, careers and relationships) or should survivors
reside significant distances from the treating hospital.21–23
In response to these barriers to oncologist-led follow-up, it
has been suggested that primary care physicians (PCPs) may
be suitable to assume a greater role in cancer care. As primary
care providers, PCPs foster long-term relationships with
patients and are well placed within the community to
holistically manage health-care, integrating cancer care into
preexisting and ongoing primary care.15,24 In terms of health
outcomes, a PCP-based follow-up system may be a safe
alternative to oncologist care,19,25 and in some instances
patients are more satisfied with follow-up.26 PCP follow-up
may also allow better continuity of care, improved individual
patient support, more proactive care, and improvements in
teamwork between disciplines.27
A recent rapid review suggests that while the efficacy of PCP
involvement and provision of such care is restricted by limitations
in knowledge, and the attitudes/beliefs of both patients and
physicians, increasing PCP involvement in cancer care has promise
given that it is both structured and individualised, potentially
utilising clear guidelines and electronic resources.28,29
However, it is unclear whether PCPs are willing and able to
fulfil this role with little to no specialist training in cancer
care.30 Also unknown is whether the PCP workforce may be
limited and under similar strain to hospital-based alternatives
in the future.31 Survivors of childhood cancers present an
additional challenge, as PCPs encounter fewer cases and have
limited paediatric oncology knowledge,32 and there remains a
dearth of evidence exploring the optimal model follow-up care
for this population.33
A clearer understanding of PCPs’ preferences for
involvement in cancer care is needed to explore the feasibility of a
primary care based follow-up system. The significant amount
of research that has already investigated PCPs’ preferences
represents an opportunity to make informed changes within
health-care systems and potentially increase the quality of life
and survival of cancer patients.34 It is timely then that these
findings be synthesised. This review therefore aimed to
summarise the available evidence on PCPs’ perspectives of
their role within cancer care.
Data Sources and Searches
We conducted a systematic review to investigate primary care
physicians’ (PCPs’) views of their role in providing care for
cancer patients and survivors. The inclusion criteria were
studies that assessed (
) PCPs’ perspectives; (
to the provision of patient care; in (
) cancer. Both
qualitative and quantitative studies were included. This
review was conducted in accordance with the PRISMA
The following electronic bibliographic databases were
searched: MEDLINE; MEDLINE In-Process &
NonIndexed Citations; EMBASE; PsycINFO and CINAHL. The
same key words were used in all databases in addition to
similar MeSH headings. Similar search terms were combined
using ‘OR’ to create search themes (e.g. neoplasm OR oncol$
OR cancer), and these themes were then combined using
‘AND’ [e.g. (neoplasm OR oncol$ OR cancer) AND (general
practitioner OR family physician OR primary care physician)].
The search algorithm is detailed in Table 1. Searches were
limited to human studies published in English from 1993–
2015 and excluded studies focused on cancer diagnosis only.
Study Selection and Data Extraction
The search captured 924 abstracts, 163 of which were
duplicates and, thus, removed. To augment the electronic search, we
also conducted manual searches of reference lists, yielding an
additional nine abstracts. The resulting 770 abstracts were
hand screened by the lead author to establish appropriateness
for inclusion in the review and also by a trained research
assistant to ensure reliability. Studies were excluded for the
following reasons (ordered by most common reason for
) not PCPs’ perspective; (
) not related to PCPs’
involvement in cancer care; (
) not cancer-specific; (
Applied across all databases
Subject or MeSH head
MEDLINE and MEDLINE In-Process Keywords
All searches refined by: English language AND humans AND year=^1993-current^ AND not diagnosis
original research; (
) screening of the general population; (
diagnosis and referral only, no provision of care; (
prevention, e.g. smoking cessation or vaccination; (
) genetics studies; and (
) other. Two articles were
unable to be obtained and were therefore excluded. Thirty-five
articles were identified as meeting all inclusion criteria. Search
results and selection are detailed in Figure 1.
Each captured article was critically appraised
according to pre-determined criteria, adapted from international
recommendations.36,37 Two independent reviewers
extracted data from the included studies and combined
the data into themes to reveal trends within the data.
They also assessed study quality and strength of
Study Selection, Characteristics and Results
The review captured 35 relevant articles representing the
views of 10,941 primary care physicians (PCPs). Table 2
summarises the findings of included studies. Articles
originated from 11 countries, including: United States (
), the Netherlands (
), Australia (
), Norway (
), France (
United Kingdom (
), Germany (
), Italy (
), Ireland (
). Two articles focused on childhood cancer survivors
and the remainder were adult-focused.
All included studies had clearly described aims, methodology
and used appropriate sampling procedures. However, many
studies did not utilise standardised or validated outcome
measures, limiting comparison across studies. Response rates were
generally poor, varying between 5 % and 100 %, with a median
of 53.5 %. Fourteen studies failed to report a response rate. In
some instances, studies reported results without exploring
contextual elements, such as country-specific health care systems.
PCP Preferences for Models of Care
The majority of PCPs desired involvement in all aspects of
cancer care,39,43 and approximately 55 % of PCPs reported
broad involvement.46 PCP involvement typically varied across
the cancer trajectory with approximately 85-90 % of PCPs
involved in diagnosis,39,45,48 45 % involved during treatment
and 70-80 % during the survivorship phase.39 The majority of
PCPs (approximately 55-65 %) believed that they should have
been involved at an earlier stage of aftercare.44,50,68 Similarly,
some PCPs expressed frustration at their lack of involvement
during treatment,70 though others agreed that treatment was
best administered in a hospital setting and need for their input
was minimal.38,43 Overall, PCPs (approximately 95 %) were
consistent in their preference for a more active role in
providing comprehensive patient care.62 PCPs desired involvement
in areas including pain management,41,54,55 psychosocial/
emotional support,41,43,44,50,51,71 the treatment of comorbid
conditions,42 health care promotion,46,54 symptom
management,41,43 monitoring for recurrence,49 information
provision,39,49 and the provision of accessible medical care.38,49
Approximately 50 % of PCPs participating in the reviewed
studies were involved in a shared model of care.39 One study
reported that PCPs were prepared to accept exclusive
responsibility for routine follow-up approximately two to four years
from the completion of active treatment44; however, another
reported that less than half of participants were willing to
provide such care five years post treatment.64 The perceived
benefits of a shared care model included greater psychosocial
support and economic cost savings for patients and the
healthcare system.53 PCPs questioned the practicality and efficiency
of a standardised proactive model of care, showing preference
for a demand-driven approach.47 With respect to caring for
childhood cancer survivors, approximately 85 % of PCPs
preferred to work in consultation with a long-term follow-up
program or oncologist.59
Confidence to Care for Cancer Survivors
PCPs’ confidence to care for cancer survivors similarly
fluctuated by stage of cancer care. Between 60 and 70 % of PCPs
expressed confidence in their skills for performing follow-up
care50,63; however, about half felt unprepared to manage
longterm side-effects40 or conduct surveillance for recurrence.60 In
general, high levels of confidence were reported for tasks such
as pain management,55 conveying bad news71 and
psychological support.50,63,64,67 However, lower levels of training or
knowledge were reported for areas such as surveillance testing,60
active treatment or surgery38,54 and advising on complementary
therapies,61 leading to a reluctance to fulfil such roles.
Communication with Oncologists
PCPs strongly endorsed improved communication with
oncologists so that they could provide improved care for their
patients.56,58,60,62,69,70 PCPs reported that they rarely or
inconsistently received sufficient correspondence from
oncologists.43,48,52,58,60,67 Though oncologists’ letters contained details
on investigation and examination findings, items such as
treatment/management plans, future management and
expectations, goals and procedures of follow-up, and psychosocial
concerns were less commonly mentioned.56,62 In one study,
approximately half of PCPs reported never having received a treatment
summary.57 PCPs strongly recommended improved
communication with oncologists so that they could effectively treat
cancerrelated issues concurrently with oncologist-led treatment of the
PCPs suggested improving post-treatment follow-up through
a shared data management system,53 such as the broad
integration of electronic medical records and standard communication
procedures between PCPs and specialists.65,70 Provision of
patient-specific standard guidelines notated by
oncologists40,44,48,59,69 or meetings aimed at sharing information and
defining roles38 were also endorsed. Electronic communication
and mail were valued,40,58,65,69 but not to the exclusion of
personal interaction with specialists, which was preferred.56,58,65
PCPs commonly reported that primary-care guidelines were not
well defined or consistent for cancer survivors,62,70 and that there
was a need for timely, detailed and regular transfer of
information.52 In terms of information preferences, 85–99 % of PCPs
would have liked to have received additional information from
oncologists regarding cancer treatments,40,56,57 the referring
PCP’s role,56 findings of investigations and likely prognosis,56
the oncologist’s follow-up plan,56,57 clinical practice guidelines
for survivorship care,40 and potential short and long term
sideeffects, including suggested management.56,57,69 PCPs suggested
Most PCPs stated that cancer treatment is
best conducted by hospitals. PCPs
provide holistic and accessible care. PCPs
reported follow-up of cancer patients to
be time consuming, but didn’t view this
as a barrier due to limited numbers. PCPs
involved in the treatment stage reported
an initial lack of knowledge, but felt it
should not deter ongoing cancer care
delivered by PCPs. Meeting with
oncologist at treatment completion would
PCPs reported involvement in diagnosis
(87.8 %), treatment phase (43.7 %), and
advanced phases (70.1 %); shared care
(48.9 %), parallel care (45.4 %) and
sequential care (5.7 %). PCPs desired
involvement in all aspects of care,
including information provision (80 %)
and emotional support.
PCPs reported a lack of clear primary care
survivorship guidelines. 48 % reported
unpreparedness to manage long-term
effects, preferring oncologist-led care.
Barriers to providing survivorship care
included: lack of standards (53 %),
limited preparation/formal training (47 %) and
inadequate access to mental health
referrals (46 %). For survivorship care, 84 %
reported usually or always monitoring for
cancer reoccurrence and 37 % reported
never or only rarely undertaking late
effects screening. 24 % of PCPs met the
criteria for multidimensional survivorship
care. Information preferences included:
cancer treatments (98 %), clinical practice
guidelines for survivorship care (85 %)
online and in print.
PCPs reported regularly assessing/
providing pain and symptom
management, nursing care, homemaker support
and emotional support. Overall, 85 %
reported being content with their role in
coordinating supportive cancer care (as a
referrer, part of a team or solely
responsible), but PCPs solely responsible were
generally least satisfied. In general, PCPs
did not see themselves as the healthcare
worker primarily responsible for
coordinating patient care, nor did they wish to
assume this role.
PCPs reported involvement in follow-up
for cancer reoccurrence (58 %), screening
for secondary cancers (58 %), general
preventative care (79 %) and treatment of
other medical problems (83 %). PCPs
expected to fully fulfil the role of
treatment of other medical problems (84 %),
general preventative care (79 %) and
screening for other cancers (61 %). For
follow-up of cancer reoccurrence, 30 %
expected partial PCP and oncologist
involvement and 54 % expected mainly
70 % of PCPs reported confidence in
conveying bad news; 5 % felt they had
poor or no skills. 74 % thought discussion
the of emotional impact should occur
with patients, 11 % would delegate to a
social worker and 6 % would avoid
unless expressed by the patient. Barriers
to initiating such discussions included:
time constraints (38 %) and lack of skill
PCP involvement in cancer care varies
over the course of cancer care,
depending on the phase of care. PCPs
expressed being less involved in
curative and palliative therapy, but
emphasised their fundamental role in
accompanying the patient throughout
the course of the disease. They
demarcated their role to focus more on
the patient’s quality-of-life, dependent
on their personal relationships,
familiarity with their social
environments and knowledge of the
patients past medical history. They saw
themselves as a resource for patients,
more concerned with symptom
management and the psychological
dimensions of cancer care compared to a
disease or treatment focus. PCPs
expressed frustration with delays in
information transfer and a lack of
coordination of care.
PCPs were willing to assume exclusive
responsibility for routine follow-up care
approximately 2.5-3.5 years following
active treatment. 50 % were willing to
accept exclusive care within 2 years of
treatment completion for breast, prostate
and colorectal cancer patients. Support
needed to provide exclusive follow-up
included: a patient specific letter from the
oncologist (95 %), expedited referral
routes (93 %), printed guidelines (92 %)
and expedited access to investigation for
suspected reoccurrence (91 %). PCPs felt
that they should be included at an earlier
stage of follow-up care (64 %) and are
better able to deliver psychosocial support
(80 %). PCPs were concerned by patients’
expectations to receive follow-up care
from oncologists (72 %).
PCPs reported being actively involved in
diagnosis (78 % in France and 83 % in
Norway), after the first year, 73–78 %
continuing to be involved in follow-up
and providing considerable psychological
PCPs expressed frustration at the lack of
visits from patients undergoing cancer
treatment. Community-based oncologists
and surgeons usually provided high
quality feedback compared to those in large
academic centres. There are discrepancies
in the summary information provided for
follow-up care. PCPs suggested
improving post treatment follow-up through the
broad integration of electronic medical
80 % of PCPs reported broad
involvement in psychological care, 28 %
sole provision and 22 % shared provision.
61 % reported broad involvement in
symptom management, 19 % sole
provision and 13 % shared provision.
87 % reported broad involvement in
health care promotion, 51 % exclusive
care and 23 % shared care. 53 % of PCPs
reported general involvement in all
aspects of care. Over 60 % of PCPs
reported an exclusive role in treatment of
anxiety or depression, counselling for
smoking and treatment for sexual
PCPs expressed viewing cancer survivors
as “not special”, assuming a wait-and-see
(reactive) attitude and a demand-driven
approach towards care, assuming cancer
survivors will take the initiative to ask for
help, particularly for sensitive issues such
as sexual, psychological or social
problems. PCPs argued that it is impossible to
organise standardised proactive follow-up
care as the survivorship trajectory varies
considerably between patients and it was
viewed as inefficient. PCPs expressed a
lack of knowledge, particularly regarding
other multi-disciplinary professionals
available to provide care.
PCPs always assumed a significant share
of the following roles in cancer care:
discussing diagnosis (85 %), emotional
support (84 %), prevention/screening
(83 %), palliative care (61 %), pain
management (58 %), coordinating care
(44 %), conveying news of therapy failure
(41 %) and management (39 %). Letters
from regional cancer centre consultants
arrived too late to be of use (30 %). 30–
50 % were ‘sometimes’/‘seldom’ satisfied
and 81 % were ‘very often’/‘often’
satisfied with the content of treatment
plans. 88 % endorsed Ba formal letter
specific to diagnosis of the patient
including current information on the
specific cancer, prognosis, treatment options
and side effects,^ and 50 % favoured a
biannual newsletter from regional cancer
Highly rated reasons for follow-up
included: checking for reoccurrence (94 %),
reassuring patients (87 %), providing
information on late effects (83 %) and to
learn more about late effects (83 %).
PCPs considered the advantages of
primary-cared based follow-up to include:
pre-existing relationships with patients
(82 %), accessibility (69 %) and lower
costs (66 %). PCPs felt they are
appropriately located to provide supportive
follow-up and may help limit feelings of
abandonment that follow discharge.
Major disadvantages of PCP involvement
included: insufficient budgets (79 %),
limited time (77 %), and lack of
appropriate expertise (75 %).
18 % of PCPs agreed that hospital
followup provides important psychosocial
support. 69 % of PCPs considered they had
the necessary skills to do follow-up and
82 % thought they were well located to
provide psychosocial support. 53 %
thought that patients would prefer to see a
PCP for routine follow-up and 33 %
thought it would be less stressful to
patients. The ‘most preferred’ follow-up
system was routine follow-up by PCPs
with referral to hospital-based clinics if
issues arise (69 %). 56 % of PCPs agreed
they should be included earlier in breast
cancer care following active treatment,
58 % believed they require more training
and 26 % felt they receive adequately
compensation to assume this role. 70 %
agreed that communication between PCPs
and hospitals is effective.
PCPs saw themselves as interpreters
from the first consultation, translating,
reiterating and re-evaluating the
medical explanation. PCPs saw talks as
difficult if relaying the diagnosis.
PCPs saw themselves as someone
patients had confidence in but could
lack specific knowledge when
requested, emerging as the nearest
doctor to call in acute situations but
depended on a good discharge letter.
Many saw themselves as team workers
and companions. The relationship with
the patient was seen as an important,
as supporters of the patients/families
and as a guide, but not all felt close
to the patient due to organisational or
PCPs were interested in being involved in
prevention (86 %), diagnosis (86 %),
monitoring for reoccurrence (70 %),
psychological support (69.6 %),
followup after treatment (69 %) and palliative
care (68 %). Five themes emerged –
importance of involvement and role of
PCPs; need for detailed, timely and
regular communication; influence of
location (i.e. increasing involvement of
rural PCPs); training; and barriers to
caring for patients with cancer. Barriers
included: lack of skill, time, resources and
51 % of PCPs supported the transfer of
follow-up care to the community. The
barriers affecting transfer were increased
workload (87 %), cost (83 %) and
medicolegal risk (83 %).
PCPs reported a shared management
system comforted the family, relieved
anxiety and provided economic benefits,
allowing for more treatment choices to be
offered. They rejected that the system
required too much time, record keeping or
money; rather, it strengthened their
relationship with university physicians
and was personally satisfying and
educational. They expressed a need for a
facsimile system where information could
be shared, and a patient financial
counsellor or reimbursement specialist.
PCPs assumed or comanaged the role of
managing comorbid conditions (98 %),
evaluating and/or treating depression
(95 %), ascertaining DNR status (95 %),
hospice referrals (95 %) and prescribing
pain medication (91 %). PCPs were more
likely to comanage than directly preform
cancer-specific roles, e.g. evaluating
patient treatment preferences (64 %) and
deciding potential uses of surgery (53 %).
85 % of PCPs were satisfied with their
practice of cancer pain management and
60 % were content with the management
of cancer pain in France. 27 % reported
receiving training in cancer pain
PCPs’ preferences for letter content:
oncologist’s specific instructions to the
referring PCP (99 %), a follow-up plan
(98 %), test/findings on investigation
(98 %), aim of treatment (97 %), likely
prognosis (95 %), likely short and
longterm side effects (93 %), what the patient
has been told (92 %), rationale for
recommended treatment (92 %) and
management of side effects (92 %).
Oncologists’ letters actually contained
information on examination/investigation
findings; however, other items were rarely
mentioned. 78 % of PCPs identified
situations where a phone call would be
desirable over a letter.
54 % of PCPs reported ever having
received a cancer treatment summary.
Information PCPs would like to be
included in a cancer treatment summary:
summary of previous treatments (95 %),
schedules for follow-up (89 %),
recommendations for PCPs (89 %), likely
sideeffects of treatment (84 %), future
treatment related health risks (67 %) and
health insurance (14 %).
Communication problems and referral
delays were reported (especially in
nonmetropolitan areas), the improvement of
standard communication procedures
between PCPs and public hospital
specialists was recommended. Electronic
communication was valued, but
interaction with oncologists was preferred. PCPs
felt under-involved in ongoing
surveillance, and their skills under-appreciated.
1 % of PCPs preferred to care for
childhood cancer survivors independently,
85 % preferred in consultation with a
long-term follow-up program or cancer
centre-based physician and 11 %
preferred to refer survivors. 94 % considered
a patient-specific standardised letter from
specialist with surveillance
recommendations as useful and 93 % considered
access to long-term follow-up guidelines
to paediatric cancer survivors useful.
38 % of PCPs reported having
communicated with a colleague about
survivorship, 33 % attended relevant continuing
medical education activities, 33 % read
one or more journal articles on
survivorship, 23 % attended a formal lecture
during training and 18 % attended a
session at a professional conference.
52 % of PCPs were very/comfortable
assuming responsibility of recurrence
surveillance and 43 % are very/confident
they are following standard guidelines.
Ambiguity about the nature, frequency
and extent of surveillance testing was
expressed by the majority of PCPs. PCPs
suggested a desire for increased
communication with oncologists; for example,
specific surveillance plans, and that the
transfer of care should be formalised.
PCPs struggled with the defining of
complimentary therapies and expressed that
there was more to medicine then the physical
body. Many PCPs agreed on the importance
of scientific evidence, some questioned the
value of evidence-based medicine as it
conflicted with treating the whole patient,
especially beliefs and spirituality. PCPs
attitudes towards complimentary therapies
ranged from complete lack of support to
actively offering them to patients. PCPs
recognised that their lack of knowledge
could affect doctor–patient communication.
PCPs identified support, education and
protection from harm as their role with
In 85 % of cases, patients were generally
followed-up by two or more specialists.
93 % of PCPs reported to prefer a more
active role in the management of
followup of patients. 78 % agreed that they
usually do not receive any information on
the goals and procedures of follow-up as
dictated by the specialist.
38 % of PCPs preferred shared care, 25 %
preferred oncologist-led and 10 %
preferred PCP-led. 59 % (breast cancer) and
58 % (colon cancer) felt that PCPs have
the required skills to preform follow-up
care; 75 % (breast cancer) and 74 % (colon
cancer) felt PCPs have the required skills
to initiate screening and diagnostic tasks to
detect cancer reoccurrence; and 51 %
(breast and colon cancer) felt that PCPs are
better able to provide psychosocial support
in comparison to oncologists.
During follow-up, PCPs reported
enquiring about patient symptoms (74 %),
carrying out clinical breast exams (73 %)
and requesting mammograms (63 %).
80 % of PCPs felt their current
contribution to follow-up was ‘just right’.
40 % were willing to accept exclusive
responsibility 5 years from completion of
treatment and 19 % immediately or 1–2
years after. The major barriers to
assuming responsibility at an earlier stage were:
patient preference for specialist-led care
(65 %), personal knowledge and skills
(52 %) and workload pressure (36 %).
Compared to specialists, 61 % felt they
were better at providing psychological
support. A patient-specific letter with a
follow-up focus from specialists was
considered the most useful tool in the
transfer of care.
PCPs felt electronic health records (EHR)
improved communication and efficiency–
accessibility, limiting the need to contact
oncologists for basic information.
Difficulties were identified in communicating
with physicians outside of hospitals.
PCPs still valued direct communication
with oncologists e.g. via phone or email,
for specific urgent problems. PCPs
acknowledged that their role in cancer care
diminishes during the treatment phase,
particularly for comorbid conditions,
discussed the need to assume a more
assertive role and identified additional
roles they could fill during active
treatment (support for psychological distress
and maintenance of healthy behaviour
modification and goal setting).
PCPs reported a lack of specialist
knowledge to care for cancer patients at
home and an inability to remain informed
on developments in oncology. In caring
for patients, PCPs reported using
technical medical knowledge (e.g.
physical examinations), the medical
system (e.g. consult colleagues), arranged
necessary affairs at home and employed
an understanding of what it means to
suffer from cancer. This knowledge was
obtained though medical education,
literature, experiences, colleagues,
common sense and through the patient
PCPs did not feel involved in current
specialist-led follow-up, partly due to a
lack of communication. 30.1 % of PCPs
felt future colonic cancer follow-up
should be PCP-led (34.1 % for low risk
patients and 19.1 % for high risk) and
50.6 % for low risk and 36.4 % for high
risk patients agreed with surgeon-led
follow-up for the first 2 years followed by
PCP-led follow-up. PCPs reported high
levels of trust in their capabilities for
identifying and treating psychological
problems (95.3 %), social problems
(94.1 %), lower levels were reported for
identifying and treating cancer related
physical problems (55.8 %) and detecting
recurrence (30.1 %).
53 % of PCPs reported having been
involved in 5-year follow-up care for a
patient with stage I breast cancer and
64 % responded that they had some
familiarity with the protocols. 77 %
thought it appropriate for PCPs to follow
most cases, 19 % thought PCPs had a
follow-up role in some cases and 4 %
thought it inappropriate. 90 % would
accept responsibility if asked by their
patient. 90 % reported they would prefer
to start follow-up within a year of
PCPs wanted guidelines on screening,
treatment and follow-up. PCPs saw
guidelines as a possible means of
communication between themselves and
cancer centres, potentially including
notations from oncologists about
individual patients so PCPs could have
the necessary skills to provide on-going
cancer care and support for patients
throughout active treatment and
followup. PCPs stressed that information needs
to be circulated amongst all physicians
and mail was considered most viable.
PCPs agreed patient-specific written
guidelines would be beneficial if they
were clear, well written and not
conflicting, giving weight to PCPs’
* only overall response rate reported, combining PCPs and other physicians or patients
† response rate not reported
a need for more information from oncologists, such as through
survivorship care plans (SCP),57 enabling them to provide
For the management of paediatric cancer survivors, one
study reported that 30–40 % of PCPs had participated in a
conversation with a colleague about survivorship care,
participated in medical education activities, or read one or more
survivorship articles, and approximately 20 % had
experienced formal training, possibly as distant as during their
Commonly endorsed barriers to PCP delivery of cancer care
included lack of expertise or formal training,40,48,49,52,59,64,66,71
lack of time and workload pressure,49,52,64,71,72 lack of
remuneration and inadequate funding,49,52,72 lack of patient trust,44,64
inadequate resources including cancer-specific guidelines and
opportunities for mental health or multi-disciplinary
referrals40,47,52,60,69 and increased medicolegal risk.72 Qualitative
and quantitative results are summarized in Table 3.
Summary of Evidence
This review identified 35 studies representing 10,941 primary
care physicians’ (PCPs’) perspectives of their role in caring for
cancer patients and survivors. The review findings support a
model of shared-care, encompassing collaboration between
oncologists and PCPs that is fostered throughout the cancer
trajectory, not just after the completion of active treatment. It
also suggests that shared care should continue into the early
survivorship period for adults, and in a possibly ongoing
manner for paediatric cancers. Shared care can be fostered
through the use of well-designed information transfer.
In order to meet the needs of cancer patients and survivors,
various models of care have been proposed including shared
care, parallel care and sequential care.39 However, conclusive
evidence has not yet determined which model may be most
effective. PCPs have indicated an interest in increasing their
role in cancer patient care39,42,46; however, PCPs’ limited
confidence38,40,54,60,61 and ability40, 49,52,59,64,66,71 to perform
the various roles pose a challenge. It appears that PCP
confidence levels fluctuate along the cancer care continuum and
according to the type of care needed. High confidence was
reported for non-cancer specific tasks such as pain
management and psychosocial support,50,55,63 while confidence was
lower for active treatment, surveillance testing and
management of long-term effects,38,40,54,60 suggesting PCPs are
willing but feel unprepared to manage certain aspects of
cancerspecific care. This may be attributed to PCPs’ reports of
minimal formal training in survivorship care, the lack of
appropriate guidelines, insufficient contact with oncologists
and insufficient experience.30,38,40,50,59,69 Improving PCP
confidence to deliver cancer care is critical before a model of
shared care is recommended.
Other barriers, such as poor remuneration for cancer-related
services and lack of protected time and resources to upskill, may
need to be further considered to support models of shared care.
Few captured studies referred to the amount of support PCPs
had or had not received to increase their knowledge of cancer
care.55,59 It has been suggested systematic communication
pathways, specific information, shared electronic patient records,
direct contact with oncologists, clearly defined roles and
adequate remuneration are needed.38,40,44,48,51,52,56–60,65,69,70
Cancer is not the major focus of PCPs’ work and for
timeand resource-poor PCPs; greater effort is often diverted into
other more common chronic diseases.73 The literature
suggests that PCPs valued regular and detailed systems of
information sharing52 such as patient-specific guidelines40,44,59,69
or surveillance/care plans relating to their particular
patient40,56,57,60,69 rather than generalised training. With over
200 different cancer diagnoses, varying patient responses to
treatment and continued advances within the medical field,
cancer care is both complex and highly individualised. Thus,
generalised information and training quickly becomes
outdated and is less useful within this context. Therefore, the
challenge of sufficiently informing PCPs appears to be closely
Lack of expertise or skill identified by 52–75 % of PCPs49,64
Lack of skill in discussing emotions identified by 13 % of PCPs71
Limited formal knowledge of survivorship care identified by 47 %
Desire for formal training in breast cancer follow-up identified by
58 % of PCPs50
Increased workload pressure/limited time if involvement was to be
increased identified by 36–87 % of PCPs49,64,72
Limited time for discussing emotions identified by 38 % of PCPs71
Insufficient budget or increased cost identified by 79–83 % of
Patient preference or expectation for specialist-led care identified by
65–72 % of PCPs44,64
Lack of standards for providing survivorship care identified by
53 % of PCPs40
Inadequate access to mental health referrals for providing
survivorship care identified by 46 % of PCPs40
Medicolegal risk identified by 83 % of PCPs72
Lack of skill and specialist knowledge identified
Inability to remain informed on developments in
oncology identified as barrier66
Lack of time identified as barrier52
Poor remuneration identified as barrier52
Lack of general resources identified as barrier52;
– Knowledge of multidisciplinary professionals
available to provide care47
– Communication from oncologists60
– Specific patient information, e.g. surveillance
– Guidelines, e.g. for screening, treatment and
linked to developing resources that are patient-specific, easily
accessed and current, and are able to be continually updated as
care needs change. Patient-specific guidelines with the
integration of a ‘look-up’ electronic general education resource
could prove useful to overcoming knowledge and time-based
barriers,29 and would likely increase PCPs’ confidence in
caring for cancer patients and survivors.
Cancer care within the United States (US) remains a
particular challenge as international trends of workforce shortages in
oncology combined with growth of patient populations are
felt.17 Despite PCPs’ interest in an increased role in aspects of
cancer care, the trajectory of care is often fragmented among
various specialities.74 The findings of this review are
especially useful for generalists in the US—where one-third of
included studies originate—providing a summary of evidence to
begin discussion surrounding altering the existing model of
care taking into account the preferences of PCPs and the
unique features of the US healthcare system.
Finally, childhood cancer survivors pose a unique challenge
for PCPs in cancer care. There is a dearth of literature directly
addressing the PCP’s role as related to caring for this specific
group.53,59 As paediatric cancer survivors are rarely
encountered by PCPs, building this area of specialty in the general
practice setting remains an exciting field of research to be
This review included only studies exploring the PCPs’
perspective of their role within cancer care. However, it
is essential that any changes to the current model of
care should also be congruent with the preferences of
oncologists and patients. Of the 35 included studies, in
addition to investigating PCP preferences, 11 of the
studies also explored the views of oncologists and/or
patients (see39,42,46,49,50,56,57,62,63,65,72 for recent studies
of patient and oncologist preferences); however, these
results were not reported as part of this review. The
search strategy also excluded intervention studies;
however, these may objectively provide information
regarding viable models of care, beyond PCPs’ personal
preferences. Additionally, as studies originated from 11
countries, each with different models of health care,
payment systems and doctor-patient ratios, this limits
the potential for dissemination of information on an
In light of PCPs’ perspectives and preferences, the feasibility
of increasing the role of PCPs in cancer care remains
unknown. However, given adequate support, PCPs are
willing to increase their role in cancer care, with potential
medical and economic benefits for patients, oncologists
and the health care system.
Contributors: We would like to thank Sixuan Lin for her contributions
to this research.
Corresponding Author: Claire E. Wakefield, PhD, Masters in Public
Health, B Psych; Kids Cancer Centre, Sydney Children’s Hospital,
L e v e l 1 , H i g h S t , R a n d w i c k , N S W, A u s t r a l i a 2 0 3 1
Compliance with Ethical Standards:
Funding: This study was funded by the Kids Cancer Alliance, which
is supported by a translational research grant from the Cancer Institute
of NSW. Claire Wakefield is supported by a Career Development
Fellowship from the National Health and Medical Research Council of
Australia (APP1067501). The Behavioural Sciences Unit is supported
by the Kids with Cancer Foundation. Study sponsors did not have any
input into the study design, data collection or analysis, report
composition or editing, or publication decisions.
Conflict of interest statement: The authors declare that they do not
have a conflict of interest.
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