Family Practice Vol. 21, No. 4 Oxford University Press 2004, all rights reserved.

Doi: 10.1093/fampra/cmh415, available online at www.fampra.oupjournals.org

Printed in Great Britain

Psychosocial care for cancer patients in primary care?

Recognition of opportunities for cancer care
Shane W Pascoea, Richard D Nealb, Victoria L Allgarc, Peter J Selbyd
and E Penny Wrightd

Introduction

the role primary care could develop as part of a more

integrated system for providing psychosocial care for
cancer patients. Improved outcomes are a primary focus
for all professionals involved in cancer care.

Psychosocial problems are common in patients

throughout the cancer journey. The Department of
Health has emphasized the need for psychosocial
problems to be addressed,1 and in the USA guidelines
have already been brought out.2 At present, psychosocial problems are encountered at all levels of care.
However, management of systems already in place
remains a problem. Our experience and the experience
of others3 suggests that primary care professionals can
be well equipped to undertake such work, decreasing
stigma associated with psychiatric disorders and utilizing
skills used to treat other chronic diseases. In this paper,
we will review the relevant literature regarding the
detection and treatment of psychosocial issues in
primary care. The aim of the paper is to outline
psychosocial needs of cancer patients and determine
how these needs either are, or could be, met within
primary care, in addition to the secondary care setting.
The three main objectives are to describe the current
systems for delivering psychosocial care to cancer
patients, to consider how psychosocial care is delivered
in primary care in other chronic diseases and describe

Psycho-oncology is concerned with relationships

between cancer and the mind. Psycho-social
oncology is a similar term with broader implications that cancer concerns not just individual
patients but their families, friends and colleagues,
and the society in which they live. (p. 6)4

Physical, psychological and social

problems in cancer
The diagnosis and treatment of cancer is associated with
substantial physical, psychological and social morbidity
for a significant minority of patients.1,59 Physical side
effects of both disease and treatment include fatigue,
hair loss, oral inflammation, immunosuppression,
anorexia, nausea, vomiting, pain, weakness and
disfigurement, and are a significant burden for many
patients.1012 Side effects may be acute and short term
(e.g. hair loss), chronic (e.g. weakness) or variable in
their course.13 Up to a third of patients will develop a
major depressive disorder, generalized anxiety disorder
or adjustment disorder after a cancer diagnosis,
representing an increased relative risk of three times the
prevalence in the general population.1 At the less severe
end of the morbidity spectrum, all cancer patients
experience some distress.14 Distress can be seen as an
unpleasant experience of an emotional, psychological,
social, or spiritual nature that interferes with the ability

Received 5 March 2003; Revised 15 October 2003; Accepted

10 March 2004.
aMeanwood Group Practice, 548 Meanwood Road, Leeds LS6
4JN, bUniversity of Wales College of Medicine, Wrexham
Technology Park, Wrexham LL13 7YP, cCentre for Research
in Primary Care, Hallas Wing, Nuffield Institute for Health,
7175 Clarendon Road, Leeds LS2 9PL and dCancer Research
UK Clinical Centre in Leeds, Cancer Research Building,
St Jamess University Hospital, Beckett Street, Leeds LS9 7TF,
UK; E-mail: S.W.Pascoe@leeds.ac.uk

437

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Pascoe SW, Neal RD, Allgar VL, Selby PJ and Wright EP. Psychosocial care for cancer patients in
primary care? Recognition of opportunities for cancer care. Family Practice 2004; 21: 437442.
The paper outlines psychosocial problems experienced by cancer patients and the current
barriers to service delivery. New models of psychosocial service provision are put forward,
emphasizing information, communication and technology aids in an attempt to improve
co-ordination of care. The management of cancer patients has evolved greatly over the past
decades, and patients are well placed to benefit from the experiences of primary care
professionals in the delivery of chronic illness disease management strategies.
Keywords. Cancer, primary care, psychology, secondary care, service delivery.

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Family Practicean international journal

TABLE 1

unchanged when assessed at 2 and 3 year intervals.26 It

remains important to know at what point in the cancer
journey psychosocial issues arise.

Current provision of psychosocial services

In the past, the availability of services to meet patient
needs has grown out of consumer- and professional-led
initiatives, e.g. the Tak Tent service which offers support
and information, founded by Sir Kenneth Calman.27
Currently, cancer patients can receive structured
psychosocial support from secondary care health professionals with backgrounds in social work, psychiatry and
mental health, in addition to services provided by
community-based organizations.28 Services in the
community include support groups, information and
counselling services, and financial assistance. However,
the number of patients using these services and how
effective they are in addressing psychosocial needs is
difficult to establish. One study suggests that one in four
distressed patients had accessed psychological services,
and although distressed patients reported a strong
desire to access other support services, fewer than
one in 10 did so.29
Ideally, an overall management system for the
detection and treatment of psychological and psychosocial problems, integrating community- and primary
care-based services, may improve service delivery.
Psychosocial care can be properly delivered in
secondary care, where highly intensive treatment is
carried out; however, as treatments of cancer become
more mobile (e.g. ambulatory chemotherapy administration units), we can begin to think about seamless
care across the service continuum. Until recently,
psychosocial standards for oncology care have not been

Psychological service delivery needs

Time since diagnosis

Need

Percentage of patients and

relatives with this need

Diagnosis

General emotional support and information (accurately and

sensitively delivered) to cope with distress

100

Diagnosis

Short-term interventions and crisis management to deal with

levels of anxiety and depression severe enough to affect
quality of life

50

Six months after diagnosis

Management to deal with levels of anxiety and depression

severe enough to affect quality of life

25

One year after diagnosis

Management of specialist psychological and/or psychiatric

intervention to deal with high level symptoms

10

Recurrence

Management to deal with levels of anxiety and depression

severe enough to affect quality of life

50

Based on figures from Guidance on Cancer ServicesImproving Supportive and Palliative Care for Adults with Cancer Manual5 and personal
correspondence with Dr Peter Harvey.

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to cope with cancer treatment. It extends along

a continuum, from common normal feelings of
vulnerability, sadness and fears, to problems that are
disabling, such as true depression, anxiety, panic, and
feeling isolated or in spiritual crisis (p. 115).2 In
addition, cancer patients must contend with changes to
their domestic and working lives, with some patients
experiencing problems with daily living,15,16 finances17
and employment.16,18
Studies of psychological morbidity among cancer
patients in secondary care suggest that only a small
number of distressed patients are identified and
treated.1921 The model for treatment used in some
cancer centres (Table 1) identifies need and projected
numbers of distressed patient requiring treatment.
A critical review assessing psychosocial interventions
(education, behavioural training, individual psychotherapy and group interventions) for cancer patients
identified that a structured, psychiatric intervention
consisting of health education, stress management and
behavioural training, . . . including problem-solving
techniques, and psychosocial group support offers the
greatest potential benefit.22 A lack of systematic
psychological screening and under-treatment are due to
a combination of factors including under-reporting of
symptoms, a lack of awareness or understanding of psychological services and under-recognition of psychological morbidity by health professionals.20,23 There is
some evidence which suggests that psychosocial needs
change over time. Lev et al. suggest that cancer patients
quality of life and self-efficacy decrease over time.24
Post-operatively, the majority of breast cancer patients
experience high levels of psychosocial dysfunction;
however, these problems resolve within 1 year.25 After
the first year, psychosocial problems experienced by
breast cancer patients appear to plateau, and remain

Psychosocial care for cancer patients

The role of primary care in cancer care

The CalmanHine Report,37 NHS Cancer Plan1 and the
Commission for Health Improvement6 recognize the
centrality and importance of primary care in cancer care.
They acknowledge the vital role of primary care in cancer
management, and detail initiatives to improve links
between primary and secondary care, establish cancer
leads for each Primary Care Trust (PCT), and develop
PCT-based clinical data sets. However, at present, the
main roles of primary care in cancer are in the
recognition of symptoms and symptom clusters suspicious of cancer, effective investigation and referral, and
in the management of palliative and terminal care. Other
roles include the organization of routine screening,
prevention and health promotion, and management
of risk behaviours (e.g. smoking cessation), genetic
counselling and the recognition and management of side
effects of treatment or of progressive disease.

The current role of primary care in the

delivery of psychosocial care in cancer
The identification and treatment of psychosocial issues
occur in primary care but are not formally recognized or
integrated into existing structures. The relationship
between secondary care and primary care at the
different treatment stages is a starting point. For many
primary care health professionals, the experience of
cancer management ends after referral and only
recommences after intensive treatments have been
completed or when palliative and terminal care is
needed. In some instances, especially during the acute
phases of cancer treatments, patients are advised to
contact secondary care directly in the event of problems
or concerns. The specialist nature of cancer treatment

means primary care is often bypassed during treatment.

Few studies have examined cancer patients use of
primary care after diagnosis. MacLeod found breast
cancer patients made more contacts with their GP within
the first year after diagnosis compared with prediagnosis.38 Allgar et al., in an analysis of Health Survey
for England data, found that a third of respondents with
cancer had contacted their GP in the last 2 weeks, more
than other illness groups.39 Gulliford found that of breast
cancer patients consulting their GP post-diagnosis, only
7.5% of consultations were for cancer-related problems.40 However, none of these studies explored whether
consultations were for psychosocial problems, and no
other data exist concerning the prevalence of psychosocial issues in cancer patients in primary care.

Barriers in primary care

Effective integrated care may be diminished by poor
communication between primary and secondary
care.41,42 In a study of communication between GPs and
specialists, only one in five GPs had received a report
from the specialist by the time their patient had initiated
a consultation.42 Almost half of GPs surveyed described
the communication process as too slow, with a quarter
describing the information provided as insufficient and a
similar proportion stating that the role of each care
provider was poorly defined.42
Patient perceptions of GPs lacking specialist
knowledge, and GPs being too busy to deal with information requests regarding their diagnosis and treatment
may also be perceived barriers to the effective use of
primary care.42 When some patients access primary care,
for example district nurses, it appears to be for services
unrelated to cancer information provision.43
Compared with other chronic diseases, cancer remains
a relatively rare diagnosis in primary care. With only 78
new cases a year per GP,44 the number of cancer patients
(let alone the number of specific site cancers, each with
its own aetiology, course and outcome) primary care
professionals have, and therefore gain experience and
knowledge through, is small. This may compound beliefs
that cancer care, in all of its manifestations, is specialist,
to which primary care contributes little.
The lack of data concerning the management of
psychosocial issues in primary care is also an issue. Work
is needed to determine the ways in which cancer patients
are managed and supported in primary care.

The case for greater involvement of

primary care in the delivery of
psychosocial care
The psychosocial needs of patients with chronic diseases
other than cancer are detected (if somewhat poorly) and

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present. However, American standards now call for:

repeated screening of cancer patients for distress;
clinical practice guidelines for treatment of psychosocial
problems; a multidisciplinary approach; and the inclusion of distress as a quality assurance measure.2
There remains a dearth of published articles
regarding changes in patient management in secondary
and tertiary care despite the fact that research has
demonstrated increased levels of psychosocial
distress.2932 Barriers may include the poor identification
of psychosocial problems by health care staff,3335 and
reluctance on the part of patients to initiate discussion
of psychosocial issues (e.g. patients prefer the opening
to come from the oncology doctor).36 In one recent
paper,31 one in three patients who indicated need for
service had support, 9% of patients were not offered
support and only 22% of patients who were offered
support accepted.

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New models of psychosocial provision

incorporating primary care
There is good justification for providing psychosocial
care from primary care. Cancer care could be developed
where management of psychosocial issues is undertaken
routinely, with confidence, and to a high standard by
primary care professionals. Such a service could be
developed as part of a shared and integrated service
spanning health service sectors. Patients with differing
needs and preferences may access services in different
settings, varying from patients who exclusively prefer
secondary care to those who exclusively prefer primary
care at different times. This may have the outcome of

ensuring more patients have psychosocial issues

managed, and managed better. This could be achieved
through the use of specialist GPs, health or clinical
psychologists.

The way forward

Given that all cancer patients experience some distress,
and need emotional care and support, an integrated care
system for the detection and management of cancer is
required. Primary care needs the organizational skills to
identify cancer patients as a population, take advantage
of the confidence existing skills in chronic disease
management provide and access existing resources
(community and secondary) to delivery a better service
for cancer patients. The method for integrating cancer
care and ensuring quality management of patients will
require emphasis on information systems, communication and technology.
Information
In many practices, it is impossible to know accurately
who these patients are, and the structure of both paper
and electronic records means registry data are not
always readily available, even when the patient consults.
Clinical data sets (as outlined in the NHS Cancer Plan1)
will provide registers of cancer patients to enable
opportunistic or targeted identification and treatment of
at-risk individuals. An update on a patients current
treatment would also follow on.
There is also a requirement to determine current
practice and barriers in relation to psychosocial issues
in cancer. Identifying the scope of psychosocial issues
addressed in primary care, consultation rates and
accuracy of PCT-based registries will provide the
evidence on which to base policy and affect patient
outcomes.
Due to the increasing survivorship and treatment
successes of the last two decades,46 other services are
also important. Primary care can provide reports for
employment agencies and welfare support for patients
moving towards integration into the workforce or
maintaining standards of living. In the palliative and
terminal stages of illness, where psychosocial issues
again become important, an increased role for multidisciplinary teams (especially psychological and
spiritual services) is an identified need and is provided
in primary care.6 Additional training, used successfully
in secondary care, can also support this service.
Communication
Better communication will equate to greater
involvement of primary care during acute treatment, and
improved co-ordination. Currently, many patients
are not receiving continuous care, GPs are not always
informed about the progress of their patients, especially

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managed predominantly in primary care. For example,

other chronic diseases (e.g. diabetes) have well organized
services focusing on disease management using
programmes involving multidisciplinary teams, regular
monitoring and patient education, and underpinned by
National Service Frameworks. The impact of a diagnosis
of heart disease, diabetes or arthritis is well understood
by GPs and practice nurses, who have the expertise and
access to resources to deal with the long-term effects of
chronic conditions and treatments on psychosocial issues.
These services also allow patients to take more control of
the treatment provided for their illness.
In many ways, chronic illness management is the
bread and butter of primary care and uses the
considerable skills, attributes and expertise that primary
care professionals retain. These include the skills and
qualities that GPs have regarding trust and compliance
with treatment regimes in general,45 and in turn on
improved treatment outcomes and survival.6 The
ongoing, long-term relationship with primary care
ensures a patients cancer experience is understood
within a social and family context. GPs and other
primary care professionals are able to provide
emotional support and reassurance, and have the
capacity to co-ordinate care effectively within a practice.
In addition, detailed knowledge of the patient raises
health professionals awareness of patients coping skills
and areas of functional deficit. GPs have a good
understanding of the need to refer on to more
specialized services where appropriate. These services
include district and practice-based nurses, patient
information advisors, counselling (both genetic and
psychological), and a range of housing and financial
services. Primary care professionals are uniquely placed
to fulfil a central role in the trajectory of the cancer
journey from diagnosis and through to treatment and
recovery or palliative care. Lastly, patients may feel
more comfortable, and almost certainly will have
greater access to a local health centre than a large
secondary-based treatment facility for follow-up or
information regarding ongoing issues.

Psychosocial care for cancer patients

Technology
Technological innovation in secondary and tertiary care
has seen major advances, with the use of touch screen
technology and automated collection of quality of life
data.21,47 At present, however, GPs can experience long
delays in obtaining test results from secondary care, can
receive inadequate information regarding diagnosis and
treatment,43 and can have patients not monitored upon
discharge.6
The use of electronic records can provide shared
information between primary and secondary care incorporating psychosocial assessment. Patient-held records
may include patients in this sharing of information,
placing greater responsibility on the patient and leading
to greater patient-centred care. In some localities, GPs
with special interests in cancer may develop and provide
a practice-wide, or PCT-wide role in the development
and co-ordination of cancer services encompassing
psychosocial issues.

Acknowledgements
We thank Dr Peter Harvey for input on the service
delivery aspects of care, and Professor June Huntington
for support on the draft. Meanwood Group Practice is a
research practice funded through the NHSE Northern
and Yorkshire R&D Directorate.

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14

Conclusions

Psychosocial issues in primary care are likely to

remain a low priority in primary care until the role
in primary care is more firmly established and
recognized
The formal management of psychosocial problems
in cancer is currently almost exclusively undertaken
in secondary care
Good precedents exist to suggest primary care could
have a significant role in psychosocial care
Strategies have been suggested as to how primary
care could begin to deliver such care; an integrated
service across health service sectors is needed. PCT
cancer leads are central to this process.

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