Assessment

and care
planning
for cancer
survivors

A concise evidence review

January 2014
Authors
Professor Austyn Snowden and Professor Craig White.

Acknowledgements
We would like to thank the following people for their assistance
with this review:
Glenn Marland; Stuart Milligan; Elaine Stevens; Bill Smith;
Angela Quigley; Marian Renshaw; AnnMarie Carr;
Susan Jackson; Paul Canning; Audrey Cund; Douglas Park;
Noeline Young.
Contents

Background 4

Overview 6

References 38
Background

The Assessment and care planning This rapid evidence review was
(A&CP) working group was set up commissioned to review the
as part of the National Cancer publications and grey literature and
Survivorship Initiative (NCSI) in 2009 considered six key areas/headings:
in response to the Cancer Reform
1. Currently only around 25% of
Strategy (2007). The aim of the
cancer survivors receive a holistic
working group was to scope, test
needs assessment (HNA) and
and develop services, to improve the
care plan.
identification of unmet needs and
the actions needed to support those 2. Lack of Holistic Needs Assessment
needs and improve the quality of life of people after cancer treatment
in survivorship. contributes to poorer outcomes
and experience for people living
An increasing number of cancer
with cancer.
patients are living with the effects
of a diagnosis of cancer. There are 3. There is a lack of specialist
currently 2 million survivors in the UK skills, knowledge and services
and this figure is predicted to rise to within Health and Social Care
4 million by 2030. to adequately assess and plan
care for people following cancer
The NCSI report, Living with and
treatment.
beyond cancer: Taking action to
improve outcomes (2013) identified 4. There are a number of short
that ‘evidence shows that many of and longer term solutions to the
these cancer survivors have unmet implementation of assessment
needs particularly at the end of and care planning for all people
treatment, whilst others are struggling affected by cancer.
with consequences of treatment that
5. Establishing these changes can
could be either avoided or managed’.
lead to significant benefits to
The report highlights the importance patients and cost savings to Health
of changing practice to be able to & Social Care.
offer better support and improved
6. Now that we understand the scale
outcomes whilst reducing the demand
and severity of this problem, there
on the health service. Addressing
are some clear ‘calls to action’ for
people’s needs is identified in this
different groups.
document as a priority to meet the
increasing demand on services. These key headings are further
subdivided for the purpose of this
literature review.

4 Assessment and care planning for cancer survivors: a concise evidence review
 This concise review summarises the needs. Holistic Needs Assessment
literature exploring the impact of is focused on the whole person.
HNA in practice. The literature for the Their entire well-being is discussed
evidence review is quoted in the main – physical, emotional, spiritual,
body of the text and referenced at the mental, social, and environmental.
end of the document. The process culminates when the
assessment results are used to inform
The evidence review is intended to
a care plan.
inform health care professionals and
managers wishing to implement a The care plan is based on the
change in practice to incorporate diagnosis and holistic assessment of
holistic needs assessment and the patient. The essential components
care planning. Innovation to will include needs and concerns
Implementation A ‘how to guide’ identified by the patient related
(2013) is also available which to the diagnosis. It prioritises the
outlines the key principles to changing patient’s issues and includes a
practice and implementing stratified statement on the specific goals,
care pathways. actions and approaches to address
them – and recognises issues
For the purpose of the evidence
which may not be readily capable
review the definitions agreed by the
of resolution. The assessment and
NCSI are available at ncsi.org.uk
care plan process should ensure
were used and are as follows:
that care is consistent with the
patient’s needs and progress toward
supported self management.
Holistic Needs Assessment
(HNA): The care plan will be developed
in partnership with the patient
Holistic Needs Assessment is a
and become a part of the patient-
process of gathering and discussing
held record that can be reviewed
information with the patient in order
to ensure that actions have been
to develop an understanding of what
taken and revisited if health
the person living with and beyond
and social needs change.
cancer knows, understands and

• Department of Health (2007) Cancer Reform Strategy

• Macmillan Cancer Support (2008) Two Million Reasons.
• NCSI (2013). Living with and beyond cancer: Taking action to improve outcomes. Department of Health gateway ref. 18455.
• NHS Improvement (2013) Innovation to Implementation: Stratified pathways of care for people living with or beyond cancer,
A ‘how to guide

Assessment and care planning for cancer survivors: a concise evidence review 5
Overview
This concise review examines the evidence for Holistic Needs Assessment
(HNA) in cancer survivors. It takes a structured approach by categorising
levels of evidence pertaining to a series of specific statements.
We therefore begin with summary definitions of terms and a brief
description of the evidence categorisation system.

Definition of Holistic NCSI (2008) define a cancer

Needs Assessment survivor as someone who:
Holistic Needs Assessment is a • has completed initial cancer
structured method of consultation. management and has no apparent
It is usually completed by the patient evidence of active disease
immediately prior to consultation.
• is living with progressive disease
The clinician then uses this to
and may be receiving cancer
guide the consultation. The idea
treatment but is not in the terminal
is that by using this measure the
phase of illness (last six months
consultation is thus focused on
of life)
the most important needs of the
patient, as defined by them. • has had cancer in the past.

Definition of Cancer Survivor SORT criteria

Morgan (2009) defines a cancer Each of the following statements are
survivor as: ‘an individual who supported by evidence that fits into
has been diagnosed with cancer, one of the following three categories,
regardless of when that diagnosis with A representing the most robust
was received, who is still living.’ and C the weakest evidence.*
Morgan goes on to outline
that there are four essential
components of survivorship
– prevention, surveillance,
intervention and coordination.

*Please see Ebell MH, Siwek J, Weiss BD, Woolf SH, Susman J, Ewigman B, et al.: 2004. Strength
of recommendation taxonomy (SORT): a patient-centered approach to grading evidence in the
medical literature. The Journal of the American Board of Family Practice/American Board of Family
Practice17:59–67

6 Assessment and care planning for cancer survivors: a concise evidence review
 Code Definition

A Consistent, good-quality patient-oriented

evidence**

B Inconsistent or limited-quality patient-oriented

evidence**

C Consensus, disease-oriented evidence**, usual

practice, expert opinion, or case series for studies
of diagnosis, treatment, prevention, or screening

** Patient-oriented evidence measures outcomes that matter to patients: morbidity, mortality, symptom
improvement, cost reduction, and quality of life. Disease-oriented evidence measures immediate,
physiologic, or surrogate end points that may or may not reflect improvements in patient outcomes
(eg blood pressure, blood chemistry, physiologic function, pathologic findings).

Assessment and care planning for cancer survivors: a concise evidence review 7
 1. Currently only around 25% of cancer survivors receive a
Holistic Needs Assessment (HNA) and care plan
1.1 What are the benefits of Holistic Needs Assessment?
The Holistic Needs Assessment addresses the needs and
issues that are important to the patient1 which are important
because these needs are often more pertinent than identifying
distress per se2. In America the survivorship care plan (SCP)
extends from the HNA and is the best strategy to support
individual needs by taking account of the individuals day
to day challenges of everyday living, eg benefits, work,
insurance3. An electronic version has been piloted in four sites
across England. Early findings suggest there is a rise in the
B
number of HNA completed in comparison to a paper based
process. It is faster, saves time, connects professionals and
informs better clinical decision making. It was identified that
interconnectivity of technology and sharing of data across
NHS delayed onset of the projects and limited progress4.

1.2 Does the care plan provide the patient with the details
of information and support available to enable self
management and the steps needed to achieve
their goals?
The care plan is a communication tool that empowers the user
to self manage and improve their quality of life whilst living with
cancer5,6. The care plan is cited as a strategy to address individual
needs,5 central to which is the identification of the responsibilities
C
key professionals hold to ensure care is coordinated and
communicated timely and in a manner that respects the user’s
needs. It is vital that services are available to meet the needs
identified at assessment7.

8 Assessment and care planning for cancer survivors: a concise evidence review
1.3 Does the HNA process ensure that all patients have the
opportunity to discuss their needs, thus offering equity of
care and access to services?

C
Systematising the process of managing distress appears useful to
people in navigating support systems8. Language problems may
impact on service equity9 but the opportunity to systematically
discuss areas of concern pertinent to the individual is clearly highly
valued by patients1.

1.4 Is there data identified to support future service

commissioning and development?
Several NICE guidelines refer to the need for HNA and care
plans eg Breast standards. They are also embedded in cancer

B
commissioning toolkit draft specifications eg colorectal item
3.1.21. Cancer is a national priority and key documents across
the UK countries set out similar themes in terms of prevention,
early diagnosis and treatment of cancers 10–12. The need to embed
the social component of care in commissioning is increasingly
recognised13.

Assessment and care planning for cancer survivors: a concise evidence review 9
 1.5 Why do we need to change practice?
We identified that 2 million people are living with and beyond
cancer in the UK and this is predicted to increase to 4 million
by 2030 as a result of an ageing population, rise in number of
long term conditions, lifestyle factors and the rates/incidence
of cancer14. Combined figures for all cancers (excluding non-
melanoma skin cancer) in the UK (2008–2010) show that there
is an average 322,923 newly diagnosed cases of cancer each
year. There are now 1.24 million cancer survivors who have had
their diagnosis for longer than five years. This accounts for a

A
3.2% growth per year in the number of survivors. The four most
common cancers are breast, lung, prostate and colorectal which
account for 53% of cases and 47% of deaths. In the UK, men
account for 163,100 of cases and 159, 823 women15. Scotland
had the highest cancer mortality rates, around 15 per cent higher
than the UK average for both males and females. Almost a third
of cancer survivors experienced changes in their work situation
after cancer. Problems with obtaining health insurance, life
insurance and home loans were also common16. Against the
backdrop of a growing and aging population, rates/incidence of
disease cancer is likely to increase in men and women by 55%
and 35 % respectively17.

1.6 With increasing numbers of people diagnosed

with cancer do we need to move towards stratified
managed care pathways and encourage supported
self management?
Recent studies have shown that stratified care pathways
complement survivorship care plans by creating and detailing the
stages of care (specific to each cancer), the possible outcomes,
self management approaches and responsibilities of services
B
and professionals18. The benefits of risk stratified care pathways
include the potential to reduce duplication and omission of care
and connect the interface between acute and primary care19.

10 Assessment and care planning for cancer survivors: a concise evidence review
1.7 Does HNA and care planning identify individual
needs, enable those needs to be addressed and promote
self management?
Needs analysis systematically identifies gaps in service provision.
Starting at this point led to NHS Improvement designing a model
C
that delivers appropriate evidence based supported self care 20.

1.8 Is HNA relevant in the wider context of care in relation

to other chronic conditions, eg Rheumatoid Arthritis
and Diabetes?

A
Holistic Needs Assessment is a transferable method of facilitating
appropriate person centred care. It is a staple of mental health
care21 and increasingly recognised in chronic disease conditions
such as diabetes22 and rheumatoid arthritis23. The need to put
the person at the centre of all their care is now embedded in UK
health policy24,25.

Assessment and care planning for cancer survivors: a concise evidence review 11
 2. Lack of Holistic Needs Assessment of people after cancer treatment
contributes to poorer outcomes and experience for people living
with cancer
2.1 Does a lack of assessment and care planning during
and following treatment for cancer lead to persistent
problems after treatment for people living with cancer?
Common problems can be identified within the domains of care
as physical, social, practical, spiritual and/or psychological.

A
Physical problems such as bladder and bowel problems26,
poorer quality of life, psychological distress, sexual problems,
problems with social relationships and financial concerns are all
common problems27. Pain, fatigue, information needs, anxiety,
depression and other psychiatric disorders are also frequently
discussed28, 29 with suicidal thinking evident in some adult survivors
of childhood cancer30.

2.2 What proportion of people affected in this way?

Distress is unpredictable31. Newly diagnosed people range in their
unmet needs from 15–93%32. High rates of anxiety, depression
and or psychiatric disorders in patients diagnosed with cancer
ranged from 16–45%. Prevalence of long term psychological
distress in such patients ranges from 20–66%28. However, some
commonalities exist. Younger people tend to be more distressed33
and most studies showed that the level of unmet needs was
highest after diagnosis and start of treatment and decreased over
A
time. Predictors of unmet needs included: younger age, female
gender, depression, physical symptoms, marital status, treatment
type, income, and education32.

12 Assessment and care planning for cancer survivors: a concise evidence review
2.3 What are the negative effects on patient and family
experience and outcomes?
Anxiety and depression were the two predominant
problems most often encountered by therapists during
therapy (31% and 29%, respectively). Other problems
included relationship problems (23%) and saying farewell
C
to life (21%)34.

2.4 What is the cost burden to Health and Social care of

this problem?
Care that has fulfilled all a patient’s needs is not more expensive
than care that has not fulfilled all perceived needs35. The authors
therefore recommend care that fulfils patient’s self perceived
needs. It is known that 10% of people need psychosocial services
B
independent of level of distress2.

2.5 What is the impact on emergency admissions and

resource use?
Emergency admissions of patients with a cancer diagnosis
rose by 30% between 1997/98 and 2006/2007 equating
to approximately 750 emergency admissions per day across

B
England36. There were just over 400,000 emergency bed days in
lung cancer in 2008/09 or 5 emergency bed days per patient.
The ratio of emergency bed days per patient is significantly lower
in other tumour types, averaging around 1 per annum37. In lung
cancer, a 10% reduction in emergency bed days (ca 40,000 bed
days) equates to a saving of £9.3m37.

Assessment and care planning for cancer survivors: a concise evidence review 13
 2.6 What common chronic illnesses could be identified early
by holistic assessment eg anxiety and depression?
Older cancer survivors have higher rates of co-morbid conditions
and these conditions can exacerbate the effects of cancer and
its treatment on the post-treatment health of older adults38, 39.
Older adults in particular also worry about a cancer recurrence
although physical problems related to cancer and treatment
was also a top source of distress in younger patients40, 41.
After secondary malignancies, cardiovascular disease is the
B
leading cause of late morbidity and death among cancer
survivors. The underlying cause is thought to be the late effects of
cardio toxic cancer therapy42. Peripheral neuropathy is a common
side effect of many chemotherapy agents43.

2.7 What proportion of people are affected in this way?

60% of over 10,000 survivors of child cancers reported at
least 1 chronic health condition and almost 30% had a severe
condition by a mean age of 26.6 years. The authors state that the

A
curative effect of cancer treatment is profound with damage to
surrounding normal tissue and risk of secondary malignancies44.
Survivorship care plans have clear role in identifying potential and
actual comorbid conditions associated directly with cancer and
its treatment45. In a systematic review of thirty studies examining
unmet needs in cancer care the authors32 found up to 93% people
had unmet needs although this level decreased over time.

14 Assessment and care planning for cancer survivors: a concise evidence review
2.8 Quantify negative effects on patient and family
experience and outcomes
Anxiety scores were higher among women than men and
both anxiety and depression scores were highest during years
1–5 compared to the first year and more than five years post
diagnosis46. Negative effects may also be disease specific.
For example couples surviving prostate cancer face long-term
challenges in their relationships as they adapt to chronic illness47.
A robust qualitative appraisal48 found the following pertinent
themes, illustrative of the suspension of normality endured by

B
families and survivors of cancer:
• ‘Life is back to normal and yet not’.
• ‘Life has a shadow death’.
• ‘To share or not to share the illness’.
Kim et al49 found that some interventions were designed to help
caregivers manage their own emotional distress as well as the
survivors’ distress, help them to find meaning in the cancer care
giving experience and foster supportive familial relationships.
This will benefit caregivers by improving their quality of life, not
only during the time of diagnosis and treatment but years after.

2.9 What is the cost burden to Health and Social care of

this problem?
Annual savings arising from extending one to one support in

A
prostate, lung, head and neck and colorectal Cancer – shown as
a reduction in hospital and GP visits is estimated £57 per patient
or the equivalent of 1.1 GP appointments37. These types of studies
are contentious as they have to make assumptions about future
care savings; however, they are increasingly being taken seriously
as identified in A Guide to Social Return on Investment13.

Assessment and care planning for cancer survivors: a concise evidence review 15
 2.10 Can common symptoms (including secondary cancers)
be identified by holistic assessment eg lymphoedema?
The problem list of a holistic assessment should help in identifying
the common symptoms that people report following treatment
for cancer; these include cancer-related fatigue (CSF) that is
complex and distressing. It affects 70–100% of patients receiving
chemotherapy and a significant number who have completed
their treatments50. Persistent physical and psychological symptoms
such as fatigue, pain, sleep disturbances and fear of recurrence
as well as quality-of-life outcomes have been described in women
during and after breast cancer51. Secondary Lymphoedema
may develop after surgery from solid tumours, such as in breast
A
cancer52. Long term effects develop during treatment and
persist for at least five years, such as neuropathies with related
weaknesses, numbness, pain, fatigue, cognitive and sexual
difficulties, elevated anxiety and depression53. In survivors of
childhood cancers approximately two thirds of the survivors
experience at least one late effect and about one fourth
experience a late effect that is severe or life threatening54.

2.11 What proportion of people are affected in

this way?
Up to 2 million cancer survivors cope with Lymphoedema
daily,15–25 % of the breast cancer population alone55.

B
Complications for childhood survivors include growth impairment
and development, neurocognitive dysfunction, cardiopulmonary
compromise, endocrine dysfunction, renal impairment,
gastrointestinal dysfunction, musculoskeletal sequelae and
subsequent malignancies. It suggests that approximately two thirds
of the survivors experience at least one late effect and about one
fourth experience a late effect that is severe or life threatening54.

16 Assessment and care planning for cancer survivors: a concise evidence review
2.12 What are the negative effects on patient and family
experience and outcomes?
Cancer recurrence is described as a distressing experience
for survivors and their families56. Thoughts and feelings such
as ‘oh no not again’ and shock with the future being perceived
as a state of uncertainty. It was suggested that for some families
being informed of further cancer diagnosis or return was
B
more devastating to the family than being informed of the
first diagnosis57.

2.13 What is the cost burden to Health and Social care of

this problem?
The cost of recurrence to the NHS is high. One study puts the cost
at £10,906 per annum per patient37 in estimating the savings

A
to be made from a one to one system of aftercare support in
colorectal cancer. Again it should be stated that these savings are
based on assumptions made by these economists. Probably of
greater significance is the suggestion that identifying and treating
comorbid depression in cancer may not just enhance quality of life
but extend the life of depressed cancer patients58.

Assessment and care planning for cancer survivors: a concise evidence review 17
 3. There is a lack of specialist skills, knowledge and services within
Health and Social Care to adequately assess and plan care for people
following cancer treatment
Early NCSI work showed that awareness of the benefits of
Assessment and care planning amongst health professionals was
low and the needs of cancer survivors for information and services
are often unmet59, 60 which may reflect limited Assessment and
care planning on the part of health professionals61. The need for
additional social support has also been identified62 inferring that
professional understanding of the need for systematic holistic
assessment may be low. A UK study found that nurses have
difficulty identifying distress using their routine clinical judgment
and make more false-negative than false-positive errors in the
recognition of distress in cancer patients63. There is a general
lack of understanding as to the benefit of guidelines in improving
practice64. Assessment and planning are often part of this process
and so the issues may be related. Findings from the research
literature indicate that medical and nursing staff often lack the
skills needed for assessing the holistic needs of patients65.

3.1 Is there evidence of services between clinical teams for

patients with multi-morbidities?
Comparisons regarding the use of health care services by cancer
patients with a control group of non-cancer patients in the
Netherlands found that cancer patients consulted general practice
more frequently and suffered more often from co-morbid chronic
conditions. These findings suggest a need for better co-ordination
and communication between professionals when multi-morbidities
are present66. The experience of cancer in those diagnosed with
cancer as older adults is often superimposed on existing health
conditions, which disproportionately affect the elderly population.
Understanding the extent to which having cancer contributes to
decrements in physical, mental and social function, above and
beyond the influence of other chronic health conditions and
normative aging, will be critical to the long-term care of older
cancer survivors39.

18 Assessment and care planning for cancer survivors: a concise evidence review
3.2 Are there appropriate assessment tools for a holistic
needs assessment to correctly assess the needs of people
affected by cancer?
Distress in cancer has been the subject of significant psychometric
study in recent years67. However, there is increasing recognition
that distress in itself may not be a relevant measure of need,
so common methods of needs assessment such as the Distress
Thermometer may not be the best tool to identify specific
individually pertinent needs2, 68. There remains a lack of awareness
among health professionals concerning needs of cancer
survivors69. Future research should therefore test assessment
methods designed to identify patients who may benefit from
psychosocial interventions70, 71. A
The development of a Survivors’ Unmet Needs Survey which
distinguished between the problems that survivors experience and
those they actually want help in managing, reflects how these
problems can vary from what health professionals think survivors
want72. This issue is illustrated further in a qualitative study
which described the effects of unresolved post surgical morbidity
following prostatectomy and demonstrated the importance of
assessment in identifying patients’ need for information regarding
potential long term problems73.

3.3 What if complex issues are raised that are not familiar
to the practitioner?
Health professionals had limited understanding of issues in respect
of sexuality and intimacy and the provision of patient centred
communication in this respect was linked with staff attitudes and
beliefs rather than the evidence74–76. This is not made easier by the
finding that there are no current assessment tools that account for
B
all aspects of peoples’ needs77 although there is considerable work
in this area78.

Assessment and care planning for cancer survivors: a concise evidence review 19
 3.4 What about the process of assessment?
Inadequacies in psychometric rigour, problems with scoring
methods, use of ineffective interventions and lack of adherence
to intervention protocols seem to account for processes to identify
unmet care needs being ineffective79. A grounded theory study
found GPs dissatisfied with level of information they got from
hospitals80.
A UK study identified five key times in the cancer journey as
being especially significant to survivors and suggested that the
A
lacking component is a constant, known clinician who offers a
holistic approach81. A recent Cochrane Review found no standard
instruments that measured continuity of care in cancer patients
and no evidence that current models of management made a
difference to the health-related outcomes of cancer patients82.

20 Assessment and care planning for cancer survivors: a concise evidence review
3.5 Is there a need for cultural change and team working?
Cancer survivors often report that their medical needs are
met, but psychosocial needs may remain unaddressed83.
Psychosocial issues were rarely reported as triggering referral
to specialised palliative care services among medical staff
surveyed. Referrals were mainly for physical symptoms related
reasons84. This aligns with the impression gained from a
Lancet article that non physical issues do not appear to be
a priority to physicians85. Professionals lack the necessary
skills for assessing and detecting patient distress, but medical

C
staff often feel this is the responsibility of nurses86.
There are no standardised measures that allow for the empirical
investigation of continuity of care between teams82. There is a
clear need for more service-user involvement in planning and
implementation of cancer care and in developing services at
an operational level87. New models of survivorship care include
the engagement of cancer survivors and advocacy groups who
strongly support the fostering of collaboration and partnership
between clinicians and cancer survivors69. Sharing care through
the development of survivorship care plans and electronic records
have been shown to be of value to primary care providers,
increasing their knowledge about survivors’ cancer history and
influencing the care they provide88.

Assessment and care planning for cancer survivors: a concise evidence review 21
 3.6 Is there enough time and facilities to adequately
implement this change in practice?
The increasing cost of cancer treatments and prolonged survival of
cancer patients is placing a strain on care services and will require
innovative strategies to ensure there is adequate provision to meet
the future needs of people affected by cancer89, 90.
Nurses identified that the greatest barriers to providing
‘survivorship care’ were time and funding91, 92. Lack of time is a
common perception93. For primary care physicians volume of
correspondence is also given as a factor92. A US study to evaluate
agreement of treatment summaries and survivorship care plans
showed gaps in agreement and noted a substantial time burden in
preparing and delivering survivorship care plans94. However, there
is also evidence that systematic management of unmet needs

C
within consultation takes no more time than treatment as usual95
and care that meets people’s expressed needs is no more
expensive than care that does not35. An evaluation by NCSI in
the UK into the use of electronic Holistic Needs Assessment also
identified time burden as one of the principal reasons for low and
varied completion of paper based HNAs but suggested that time
savings could be achieved in moving to an electronic system96.
There are conflicting incentives and rewards from care providers97.
In the US, increasing costs of cancer management and perverse
incentives for reimbursement of care providers can act as a barrier
to patients accessing care98. US online survey of 399 nurses found
that 46% thought that lack of time and funding was one of the
greatest barriers to providing survivorship care91. Data from the
US National Health Interview Survey (NHIS) from 2003 to 2006
indicated that more than 2 million US cancer survivors did not
get one or more needed medical services because of financial
concerns during this period99.

22 Assessment and care planning for cancer survivors: a concise evidence review
3.7 What processes hamper effective assessment of people
living with cancer?
There is no process in place to identify where and when in the care
pathway is appropriate to assess people’s needs.
Socio-demographic and disease-specific variables affect the
level of perceived unmet needs100. There is a lack of coordinated
patient treatment across multiple healthcare providers, with
a tendency of medical professionals to refer patients back to
specialists101. Some cancer patients receive a lot of information
about their disease and medical tests but are dissatisfied about
the information provided regarding side effects, rehabilitation,

C
psychological support and effects on their social and sex
lives102. Because oncology practice tends to focus on treatment,
management and detecting recurrence of disease, this leads to
inadequate assessment and management of problems resulting
from the initial treatment they received103.
One of the barriers identified in the NCSI testing was the lack of a
process/key marker to identify the end of initial treatment.
Patients often lack the necessary information and support to help
them effectively manage the transition from being a patient on
treatment to becoming a survivor104, 105. Discharge from hospital
follow-up is a key point in the cancer journey but in a study that
explored survivors’ experiences of discharge from hospital
follow-up, approximately one-third of respondents were not
discharged 5–16 years post diagnosis61.

Assessment and care planning for cancer survivors: a concise evidence review 23
 3.8 Is there a mismatch of health care professional’s
perception of patient needs and the reported needs
of patients?
In contrast to widespread assumptions about patients’ need
for counselling, many patients use friends and families for
support. A study set up to identify and provide for the needs
of patients with a diagnosis of non-curative cancer found that
services focussed on professional agendas, rather than those
of patients106. Even in advance care planning patients choices
are not always adhered to107. A survey of 1,130 oncologists
C
and 1,021 primary care physicians regarding follow-up
care of breast and colon cancer survivors showed they differ
in their beliefs regarding who provides specific aspects of
care and highlighted a need for better care coordination108.
There is evidence of confusion regarding treatment plans,
staff roles, vocabulary used, unmet emotional needs109.

24 Assessment and care planning for cancer survivors: a concise evidence review
4. There are a number of short and longer term solutions to the
implementation of Assessment and care planning for all people
affected by cancer
More training relating to communication and shared decision
making skills for health care professionals may improve patient

C
centered care planning110. Communication between the health
care provider and the patient can play an important role in
determining who will engage with health improving lifestyle
behaviours and how effectively patients recognise and report
on symptoms111.
Survivorship Care Plans can help to achieve structured support for
patients and also contribute to communication between patient
and healthcare team. There is also widespread recognition that
nurses have a poor awareness of the concept of survivorship care
planning6, 112.
Cancer survivorship is not established as a core topic within
education programmes113. However, it is beginning to become
more common. Survivorship is now being seen as a specific phase
B
of the cancer journey with nurses being pivotal in the Assessment
and care-planning process; however, barriers, including attitudes
to implementing services remain apparent6, 114.

4.1 How can Holistic Needs Assessment improve the

care pathway?
Focussing on the local and national services available to people
living with cancer eg support groups, physical activity, and social
groups can help to improve the care pathway. These may not be

C
cancer specific and could be used across a range of conditions.
All national policy advocates the use of self-management
strategies and encourages joint working with health and social
services and independent organisations such as Macmillan Cancer
Support and Maggie’s Centres10–12. For example, the ‘Chronic
Care Model’ discusses how oncology professionals can use it to
empower and enable patients and their families to engage in
self-management activities115.

Assessment and care planning for cancer survivors: a concise evidence review 25
 4.2 Is there a need to integrate Holistic Needs Assessment
into the care pathway and ‘give permission’ to the patient
to reassess should health and social needs change?
There is evidence of evolution here with the Institute of Medicine
(IOM) recommending the implementation of survivorship
care plans and the development of an electronic patient self-
assessment and management tool116. For example, the online
tool discussed in this article was developed originally for use by

C
cancer survivors themselves; however, health care professionals
have utilised it to help them provide survivorship care plans
within practice and have reported a high level of satisfaction with
the tool113.
The electronic self-assessment tool could potentially increase GPs
and other primary care team members’ awareness of survivors
and caregivers needs116. From a contractual point of view there
is a need to embed the principles of Holistic Needs Assessment
within service commissioning13.

4.3 Can innovations like nurse led assessment clinics, use

of electronic solutions such as touch screens, which draws
together common tools and resources, help?
Nurse-led services are considered to deliver evidence based,

B
patient-centred care117, 118. However, there is limited robust
evidence currently available to support the potential of nurse-
led, cancer survivorship clinics to enhance long-term survivor
outcomes119. Likewise touch screen initiatives are promising4
but need further evidence of their impact given their associated
resource issues120.

26 Assessment and care planning for cancer survivors: a concise evidence review
4.4 Are there commonly identified issues and barriers
to change?
Lack of time, resources and facilities are often cited as barriers to
change although there are other issues as identified here.
Remote monitoring has been constrained by lack of resources
(especially IT resources)120. Few cancer survivors report receiving
C
lifestyle counselling from their oncology professionals, although
the reasons for these omissions are not known121.

4.5 Is there a need for further training?

Additional skills may be required by professionals helping
patients make the transition from traditional care to a self care
model120. Better training of health care providers (and patients) in
communication and shared decision making skills might improve
patient-centred treatment planning110. A separate skills set is
required by clinicians supporting patients to develop self care
behaviours122. Few health care providers have received training
C
in how to monitor the physical health of cancer survivors123. Few
health or social care professionals in oncology or primary care
have received formal education in cancer survivorship124.

4.6 Is there a need for commissioning of services?

A briefing paper on cancer survivorship recommended that the
provision of ongoing support following primary cancer treatment
should be included in commissioning guidance for all local health
authorities125. Calls have been made for services for cancer

C
patients to be more joined up, to reduce the gaps in provision
which currently exist126. The need to focus on wider social impact
of commissioning has already been mentioned13. It should also
be remembered that value for money is defined as the optimum
combination of whole-of-life costs and quality (or fitness for
purpose) of the goods or services to meet the user’s requirement.
Value for money is not the choice of goods and services based on
the lowest cost bid127.

Assessment and care planning for cancer survivors: a concise evidence review 27
 4.7 Is there a lack of leadership or a cohesive approach?
In the United States, all patients approaching the end of oncology
care should have a Survivorship Care Plan written by the oncology
team124. However, implementation of this recommendation has
proved extremely problematic108. One study found the use of a
Survivorship Care Plan to support the transition from hospital
care to primary care did not affect short or longer term patient
satisfaction or other patient outcomes compared to normal
C
primary care follow up128. There is a lack of guidance on who
should plan and co-ordinate post-cancer patient care. Nurses may
have a role to play5.

4.8 Does Holistic Needs Assessment and care planning help

patients to better understand their needs and improve their
ability to self manage?
Information events for people living with breast cancer were
found to be cost effective and to offer value for patients, but
uptake was variable120. The benefits of a four-week information
and support programme for breast cancer survivors in Malaysia
were still apparent after two years129. Cognitive Behavioural
Therapy administered as an interactive, individually tailored

B
Internet intervention led to improved outcomes for a group of
cancer survivors experiencing insomnia130. The ‘Taking CHARGE’
programme successfully facilitated the transition to survivorship for
women treated for breast cancer131.
Women undergoing the transition from breast cancer treatment
to survivorship have specific information needs which are
inconsistently addressed132. A systematic psycho-educational
intervention was associated with improved quality of life in women
receiving breast cancer treatment. The beneficial effect was still
apparent six months after the intervention133. A review of evidence
from the UK suggests that individual and group education are
increasingly being used to achieve successful survivorship134.
Survivorship care plans should contain explicit details of the
services responsible for the different aspects of ongoing care135.
Clinical nurse specialists were found to be important sources of
ongoing psychosocial support among British cancer survivors134. C
28 Assessment and care planning for cancer survivors: a concise evidence review
4.9 What about open access patient triggered
follow up?
A robust monitoring system is required to detect relapse or
recurrence among patients stratified to self management120.
A proposed electronic patient self-assessment and management
system covering quality of life and symptom measures would
‘flag up’ any issues of concern to the patient’s primary care
team116. Increasingly, telephone and web-based systems are being
used to facilitate access to individually-appropriate after care134.
An internet-based resource has been developed to meet the
ongoing psycho-educational and support needs of survivors

C
of stem cell transplantation136.
Patients can be safely stratified to professional management or
self management. Up to 70% of breast cancer patients could be
safely helped to self manage120. It is possible to achieve successful
self-care even in people experiencing the advanced stages of
cancer137. A review of self care programmes has highlighted how
these programmes enable and empower patients, particularly
through information, support and the provision of new skills115.
A Grounded Theory study of survivors of breast cancer found
that women experienced empowerment out of adversity through
a process involving self healing, adjustment and growth138.
Empowerment was one of the outcomes recognised in a review
of studies of British cancer survivors, achieved through the
encouragement of self-care and self-management134.

Assessment and care planning for cancer survivors: a concise evidence review 29
 4.10 Does increasing our understanding of the need for a
Holistic Needs Assessment and individualised care planning
improve the experience of those living with cancer and their
ability to self manage?
Publishing evidence in peer reviewed journals enhances the
credibility and leverage to encourage this approach.
Publishing creates consensus112 and provides an evidence base for
clinical decisions113. It stimulates debate and publicises innovative
practice.
Using aggregated data from assessments can be used to inform
future service needs. C
Bilotti et al developed a care plan aggregating different
information together to ensure best practice for people with
myeloma45. Survivorship care plans need to be personalised and
combine information to assess needs of minority groups and to
inform their care139. Use of combined patient information to plan
care is a more efficient use of resources and may reduce needless
use of other services140. It allows for a more responsive service that
meets needs18. This aspiration has a long history in the NHS141.

4.11 Does improving the identification and ongoing

measurement of assessment inform the care planning
process?
There are number of factors impacting on this question, all
supporting the need for ongoing assessment and the likely impact

B
of that assessment. If these unmet needs were identified then
there could be more targeted use of psychosocial resources105, 142.
Traditional hospital follow up does not meet psycho-social or
information needs. Nurse led services more responsive and
favourable. Services led by colorectal CNS may be a more
effective model of follow up care143. Length of survivorship does
not predict the long term effects of cancer, and this supports the
need for ongoing individualised holistic needs assessment144.

30 Assessment and care planning for cancer survivors: a concise evidence review
4.12 What is the impact and quality of effective holistic
needs assessment and care planning?
Research on the introduction of holistic needs assessment found
no increase in follow up referrals but better targeted to meet
needs. Use of combined patient information to plan care. More
efficient use of resources may reduce needless use of other
services140. Patients were satisfied with using online self-care
C
plans (LIVESTRONG care plan). Improved amount of information
given on survivorship which combined with clinical discussions to
improve care113.
Understanding the impact of this approach and the patterns of
resource use will be beneficial to commissioning.
Understanding survivors’ needs can identify how to improve
care91 in a responsive manner18. Systematic tools support this
process145. Cultural issues such as language need to be factored
in. For example, in English services lower English proficiency
B
survivors had more symptoms9. Resource use data always needs to
be factored into any aspect of commissioning37.

Assessment and care planning for cancer survivors: a concise evidence review 31
 5. Establishing these changes can lead to significant benefits
to patients and cost savings to Health & Social Care

There is systematic understanding at the policy and strategic level

that operationalising person centred care in health is both moral
and more efficient10–12, 14, 15, 19, 20. The impact at personal level is
evidenced across multiple case studies. People who are listened

B
to and have their needs met feel more empowered146, 147. There
is evidence that behavioural techniques have a positive effect on
fatigue and stress, and the physical exercise interventions are
beneficial in fatigue, depression, body-image and health related
quality of life148. It is recognised that holistic care is needed to
address the detrimental consequences of treatment in head and
neck cancer survivors149.
Routine use of HNA improves efficiency by directing and
apportioning appropriate referrals140. For example, in this small
study about access to welfare rights it enabled patients to obtain

C
benefits (acknowledged area of unmet psycho-social need) which
helped with necessities such as heating etc, offset associated costs
of cancer travel, clothes, food, lessened impact of loss of wages,
provision of safety net resulting in lessened worry150. Patients were
more satisfied with clinic visits when greater attention was paid
towards psychosocial aspects151.

32 Assessment and care planning for cancer survivors: a concise evidence review
5.1 What are the costs to the Health and Social
Care system?
There is robust evidence from an economic evaluation running
alongside a randomised controlled trial of the cost effectiveness
of nurse led telephone follow-up as compared to hospital visits
and a short educational group programme in the first year after
breast cancer treatment117. Patients appeared to be satisfied
with nurse led follow up which was a practical alternative to

A
conventional hospital follow up. Patients with breast cancer found
patient initiated follow up convenient but conventional hospital
follow up more reassuring. Patients with lung cancer expressed
more satisfaction with nurse led telephone follow up and more
were enabled to die at home118. A literature review of 37 papers
led to the conclusion that nurse led follow up was acceptable
appropriate and effective152. It is difficult to know if this is directly
related to the type of assessment undertaken, but communication
is often problematic in follow up care80 so it is intuitively plausible
that personalised care is cost effective care.

5.2 Are there potential savings associated with appropriate

assessment, screening and follow up care?
There is consistent and good quality evidence that in lung
cancer the improvements in quality of life and symptom control

A
associated with the involvement of palliative care teams results in
a reduction in hospital re-admission rates and in-patient hospital
days therefore reducing overall costs153. The reviewers of a one to
one programme of aftercare in all cancers across the UK claimed
provision of this level of care would actually save money, despite
its initial cost of £60m per annum37.

Assessment and care planning for cancer survivors: a concise evidence review 33
 5.3 Are there potential savings associated with
identifying early the common symptoms of associated
chronic illnesses?
This is a function of the age of the person affected, their
probability of survival and quality of life and the type of chronic
illness, thereby precluding straightforward summary. In general,
early detection is better than late detection154. For example,
treatment of depression secondary to pain in cancer should be
identified and treated early as part of routine cancer care155.
Discharge from hospital follow-up is a key time point in the
B
cancer journey. With recommendations for earlier discharge of
cancer survivors, attention to the discharge process is likely to
become increasingly important61. Cancer services understand
this. For example, patients with pre-existing cardiopulmonary
conditions prior to cancer reported that their needs were better
met while they were undergoing cancer treatment156.

5.4 Are there potential savings in relation to

emergency admissions?
Emergency admissions can be reduced with proactive organisation
of services in general157. Deprivation, ethnicity and gender are
significant predictors of emergency admission158 whereas being
able to consult a particular GP, an aspect of care continuity was
not. This strongly suggests that proactive care grounded in a
B
solid therapeutic relationship such as engendered by holistic
needs assessment and the survivorship care plan can mitigate
emergency hospital use159.

34 Assessment and care planning for cancer survivors: a concise evidence review
5.5 Are there benefits to families, carers and society
more widely?
Carer/family benefits may be in the form of case studies of
individuals or evaluations of specific interventions.
80-90% of all care of people with long term conditions is
performed by the person themselves or their family and recent
studies are starting to acknowledge and support the significant
role of the family here160, 161. Holistic Needs Assessment could
highlight issues that are relatively straightforward to support but
often difficult for families to navigate such as welfare benefit
access150 although there is evidence that this service could be
improved79. Sensitive and person centred care also extends to the
B
family beyond death of the person with cancer162.
Benefits to society could include enabling patients to return
to work.
The Health Foundation found that ‘proactive, behaviourally
focused self-management support designed to increase self-
efficacy can have a positive impact on people’s clinical symptoms,
attitudes and behaviours, quality of life and patterns of healthcare
resource use’150 piv.

Assessment and care planning for cancer survivors: a concise evidence review 35
 6. Now that we understand the happen as a consequence. These
scale and severity of this problem, assumptions all need to be tested in
there are some clear ‘calls to a systematic manner so the evidence
action’ for different groups can develop in the most useful way
for survivors of cancer. For example,
Actions required from:
how does listening to someone
• Research community to build on/ with cancer in a structured manner
ratify evidence base make a difference to that person?
University of the West of Scotland in
There is an evidence base
partnership with Macmillan Cancer
developing. The research community
Support UK are currently studying
has a lot of information to assimilate.
this. There are many more similar
It must be stressed that assigning a
research projects underway and
value to this research as we have
many more are needed. While the
done here does not tell the full story
principles of person centred care
or expose the most important gaps
embedded in HNA are moral and
in this evidence base. For example,
politically popular the evidence for
often research that we have
their articulation requires innovative
categorised as B or C is also the
and rigorous evaluation.
best and most appropriate research
to be done on that particular issue. • Clear leadership in championing
We only make this point because HNA
building on this research base is
Associated with a clear research
not necessarily a matter of aiming
agenda is clear leadership.
for level A evidence but aiming
Macmillan Cancer Support has
for the best evidence to address
invested considerable resources in
the research question in hand.
championing HNA and continues to
The major research questions lead the way in focusing attention
emerging from a review such as on survivorship as well as other
this pertain to the impact of Holistic important aspects of cancer care.
Needs Assessment (HNA). As we have
• Selected Peer-credible Heath
seen there is growing recognition of
and Social Care professionals –
the importance of HNA combined
(‘Clinical Champions’) to raise
with elements of inconsistency as
profile of the need to implement
to how it is applied, who should
HNA.
be applying it and what should

36 Assessment and care planning for cancer survivors: a concise evidence review
The best way of operationalising this
agenda is to have dedicated people
in post to support projects designed
to raise the profile of structured needs
assessments. Ideally these clinical
champions would partner a research
organisation in embedding evaluation
at the heart of any new venture.
• Voluntary sector to raise awareness
and profile of the process
There is not enough evidence of
systematic assessment of holistic
needs in the voluntary sector to
identify specific recommendations.
However, it would seem intuitive
to suggest that any method of
systematically identifying and
addressing needs that are important
to the individual would be a
transferable positive way of working
in any sector.
• UK Governments and
commissioners to incorporate
policy/financial levers
Whilst clearly part of current
policy10–12 and aspiration, further
incentives are likely to be needed to
embed HNA and care planning in
routine clinical practice.

Assessment and care planning for cancer survivors: a concise evidence review 37
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