Download PROVIDING INTEGRATED CARE FOR CANCER SURVIVORS: THE

PROVIDING INTEGRATED CARE FOR
CANCER SURVIVORS:
THE PATIENTS’ PERSPECTIVE
While many people diagnosed and living with cancer
and beyond share common experiences, it is important to note that people with acute cancer, those with
chronic cancer and those free from cancer have different needs and preferences, and that those who are
free of cancer are not neglected in survivorship plans,
says Lydia Makaroff, director of the European Cancer
Patient Coalition (ECPC), an umbrella organisation representing over 370 organisations in dozens of countries.
Survivorship plans are also referred to as aftercare plans
and refer to the measures put in place to care for cancer patients once the acute treatment phase has been
completed.1
There is a need to focus not just on extending life but on the quality of that life—or quality
survival—given the many long-term side effects of both the disease and its treatment. Long-term
cancer survivorship care is a relatively new field of study, but concerns on the part of patients,
healthcare practitioners and policymakers to ensure quality of survival should see it grow rapidly.
For a portrait of cancer
survivorship and a definition of integrated care see
The Economist Intelligence
Unit, Cancer survivorship: a
portrait. Available at: http://
cancersurvivorship.eiu.
com/cancer-survivorship-aportrait/
1
National Cancer Survivorship Initiative (NCSI), Living
with and beyond cancer:
taking action to improve
outcomes, 2013. Available at:
https://www.gov.uk/government/uploads/system/
uploads/attachment_data/
file/181054/9333-TSO2900664-NCSI_Report_FINAL.
pdf
2
The Cancer Campaigning
Group, Patients’ experience of integrated care,
November 2012. Available
at: http://www.cancercampaigninggroup.org.uk/wpcontent/uploads/2012/11/
Patients%E2%80%99-experience-of-integrated-careA-report-from-the-CancerCampaigning-Group.pdf
3
For more on the economic
case see The Economist
Intelligence Unit, Providing
integrated care for cancer
survivors: the policymakers’
perspective, February 2017.
Available at: http://cancersurvivorship.eiu.com/articlepost-03/
4
Integrated care pathways that acknowledge patients’ needs—from diagnosis and treatment to
rehabilitation, aftercare and ultimately end-of-life care, regardless of the cause of death—are a
means of supporting more cancer survivors back to normal life.2 However, more often than not
people diagnosed with cancer feel that the care provided for them lacks co-ordination and is
fragmented rather than integrated.3
Macmillan Cancer Support,
Cured―but at what cost?
Long-term consequences
of cancer and its treatment,
July 2013. Available at:
https://www.macmillan.org.
uk/documents/cancerinfo/
livingwithandaftercancer/
consequences/cured-but-atwhat-cost-report.pdf
5
The improvement in the number of people who survive cancer is a tremendous achievement.
This achievement extends far beyond the clinical success, with many survivors able to continue
as active contributors to society. But the improvement does also come at a cost, the burden of
which is for the most part still being carried by the survivors themselves. The weight of evidence
suggests that more can be done to improve the quality of survival, even though the economic
case for this is mounting.4 Cancer survivors who have won the initial battle against the disease
continue to wage war on many fronts. This includes the long-term physical effects of the cancer
and its treatment, the emotional difficulties that threaten their mental health, and economic and
Commissioned by
financial hardship.5
© The Economist Intelligence Unit Limited 2017
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PROVIDING INTEGRATED CARE FOR CANCER SURVIVORS:
THE PATIENTS’ PERSPECTIVE
THE IMPACT OF SURVIVAL
Cancer survivors face a range of challenges but soon discover that finding out where to go for
help―and then getting it―is in itself a significant hurdle. Even where integrated care exists, “one of
the biggest issues is that people just don’t know what’s there; a lot of services may have been put
in place, but people don’t know what’s available locally. Often all it takes is someone to listen,
understand what the issue is and help them to get the right support,” says Dany Bell, treatment
programme manager at UK-based cancer charity Macmillan Cancer Support.
1. Physical health challenges
Macmillan Cancer Support,
Cured―but at what cost?
6
National Cancer Survivorship Initiative (NCSI), Living
with and beyond cancer.
7
One in four people who complete their primary treatment for cancer continue to experience
long-term ill health and disability. Debilitating fatigue is a common problem, but other issues,
specific to the particular type or site of the cancer, can continue for ten years or more.6
The consequences suffered by individual patients also vary depending on the type of treatment
Macmillan Cancer Support, Throwing light on the
consequences of cancer
and its treatment, July 2013.
Available at: http://www.
macmillan.org.uk/documents/aboutus/research/researchandevaluationreports/
throwinglightontheconsequencesofcanceranditstreatment.pdf
received, individual response to treatment, as well as the patient’s age, lifestyle and general
“U.K. ahead of U.S.A. in cancer survivorship planning”,
Chest Physician, February
21st 2014. Available at:
http://www.mdedge.com/
chestphysician/article/80543/
oncology/uk-ahead-usacancer-survivorship-planning
of potential consequences.7
8
9
For more on the challenges
facing policymakers, see
The Economist Intelligence
Unit, Providing integrated
care for cancer survivors: the
policymakers’ perspective,
February 2017. Available at:
http://cancersurvivorship.eiu.
com/article-post-03/
10
Macmillan Cancer Support,
Throwing light on the consequences of cancer and its
treatment.
11
2
health prior to diagnosis. But many of these consequences can be anticipated and managed
through integrated aftercare. In the UK, Macmillan Cancer Support has worked with the National
Health Service (NHS) to develop patient pathways for each type of cancer. These pathways can
be used to identify patients at risk of specific consequences, which are then signalled to patients
and their primary-healthcare providers. During the treatment phase patients are also familiarised
with Patient Recorded Outcome Measures (PROMs), which are used for the ongoing monitoring
By recognising patients as individuals, aftercare pathways can be adapted to suit each survivor’s
level of autonomy―an approach that avoids system resources being tied up unnecessarily.8
However, encouraging though this is, it is still cutting-edge: UK cancer survivorship planning leads
the rest of Europe and the US.9 The extent to which this model can be replicated in other markets
is largely dependent on national cancer policy and the structure of healthcare financing.10
2. Mental and emotional health challenges
Cancer survivors are “at risk for post-traumatic stress disorder due to the shock and trauma of
being diagnosed with a life-threatening disease and receiving treatment that can be both
physically and mentally gruelling”.11 Anxiety can attack people living beyond cancer in different
ways. Some people may find themselves experiencing “Damocles syndrome”, haunted by the
© The Economist Intelligence Unit Limited 2017
PROVIDING INTEGRATED CARE FOR CANCER SURVIVORS:
THE PATIENTS’ PERSPECTIVE
spectre of the cancer to the extent that they become emotionally paralysed and unable to
make decisions such as changing jobs or getting married. Fear of recurrence and survivor guilt are
also common.12
Depression is also not unusual, particularly where anxiety is not managed in good time. Other
emotional effects, depending on the type of cancer and treatment, include loss of confidence
and difficulty in coming to terms with changes in appearance, particularly where surgery such as
mastectomy has been performed.13
These challenges can be amplified by concerns about workplace discrimination. A recent global
survey by The EIU of 500 employers on the subject of cancer in the workplace found that more
than one-third of respondents (37%) were concerned about workplace discrimination against
sufferers.14
There are linkages between the different challenges faced by cancer survivors. “If people
have ongoing physical problems, these can prevent them from working and interfere with their
relationships, so we see the physical feeding into the emotional,” says Ms Bell of Macmillan
Cancer Support.
3. Financial and economic challenges
Financial difficulties can create a further source of stress. “People understand the human impact
families may have to spend extraordinary amounts of money on treatment. “In low-resource
“The mental and emotional
challenges of surviving cancer”, Harvard Health Blog,
March 28th 2011 (updated
on October 29th 2015).
Available at: http://www.
health.harvard.edu/blog/
the-mental-and-emotionalchallenges-of-surviving-cancer-201103282146
settings, which include countries like Greece, Armenia or Poland, and not just developing
13
of cancer, but they don’t see the economic impact beyond the immediate cost of treatment”,
says Julie Torode, deputy CEO at the Union for International Cancer Control (UICC), a US-based,
non-governmental organisation (NGO).
In countries where the cost of treatment is not covered by insurance, cancer patients and their
12
and have spent all of their savings on cancer treatment. They survive, but may face financial
Macmillan Cancer Support,
Throwing light on the consequences of cancer and its
treatment.
hardship,” says Dr Makaroff of the ECPC.
14
countries in regions such as Africa, many cancer patients survive cancer but lose their jobs
Even in OECD countries, access to cancer care was completely free in just one-quarter of
healthcare systems in 2010, including in the Czech Republic, England, France, Greece, Israel, Italy,
the Netherlands, Scotland, the Slovak Republic, Slovenia, Spain and Turkey.15
© The Economist Intelligence Unit Limited 2017
The Economist Intelligence Unit, Cancer in the
workplace, February 2017.
Available at: http://www.
cancersurvivorship.eiu.com/
briefing-paper/
OECD, Cancer Care:
Assuring Quality to Improve
Survival, 2013.
15
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PROVIDING INTEGRATED CARE FOR CANCER SURVIVORS:
THE PATIENTS’ PERSPECTIVE
Cancer survivors may also feel physically unable to return to their jobs or work full-time, with fatigue
commonly cited as a limiting factor. There are indications that employees who have been treated
for cancer face negative employment outcomes as a result of their condition. For example,
cancer survivors are more likely to be unemployed than other sections of the labour force.16
Employers themselves also have concerns about reintegrating staff living with or beyond cancer
back into the workplace: the EIU survey of 500 employers found that nearly one-half (44%) of
respondents were concerned or very concerned about reintegrating cancer survivors back into
the workplace.17
Macmillan research carried out in the UK in 2012 found that four out of five cancer survivors
suffered an average loss of monthly income equivalent to the national monthly mortgage
repayment, or £570 (US$687) at the time. In addition, living costs often rise because survivors need
assistance, for example to help with housework and chores that they may no longer be able to
perform on their own.18
AGEM de Boer, T Taskila et
al, “Cancer Survivors and Unemployment: A Meta-analysis
and Meta-regression”, JAMA,
2009;301(7):753-762.
16
The Economist Intelligence
Unit, Cancer in the workplace.
17
Macmillan Cancer Support, Cancer’s hidden price
tag: revealing the costs
behind the illness, June
2013. Available at: http://
www.macmillan.org.uk/
documents/getinvolved/
campaigns/costofcancer/
cancers-hidden-price-tagreport-england.pdf
18
The Cancer Campaigning
Group, Patients’ experience
of integrated care.
19
K Haire, C Burton et al,
“Integrated Cancer System:
a perspective on developing an integrated system for
cancer services in London”,
London J Prim Care (Abingdon), 2012; 5(1): 29–34.
20
CANCER SURVIVORS’ EXPERIENCE OF INTEGRATED CARE
According to a 2012 survey by the Cancer Campaigning Group (CCG), a coalition of national
cancer-related charities, of 358 cancer patients and their carers in the UK, fewer than one-half
of respondents had experienced integrated care, while one in five were not sure what the term
meant. What respondents were sure about was a lack of co-ordination and sharing of information
between the different healthcare professionals they consulted as part of their actual treatment.19
As Dr Makaroff puts it: “Patients might not know the term ‘integrated care’, but they want it. They
are frustrated by a lack of co-ordination and failure to share information.”
Care pathways that map treatment, rehabilitation and aftercare (including survivorship plans)
from start to finish, with structured and systematic communication and co-ordination between
care providers—and which include patients at each stage and between stages—are known to
be best practice. However, in most countries, even in high-income ones, such integrated care
pathways are still theory rather than actual practice, and may not even be codified in policy or
facilitated by healthcare financing and healthcare systems that are themselves fragmented.20, 21
National Cancer Survivorship Initiative (NCSI), Living
with and beyond cancer.
21
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© The Economist Intelligence Unit Limited 2017
PROVIDING INTEGRATED CARE FOR CANCER SURVIVORS:
THE PATIENTS’ PERSPECTIVE
CONCLUSION
Many cancer survivors experience a decline in their quality of life due either to the disease itself or
the treatment side effects. These physical and mental health problems, which affect a significant
percentage of survivors, can also have financial consequences that result in a permanent drop
in the household’s standard of living. Assisting survivors in their return to work, and supporting
employers through awareness-raising and training, could go a long way in mitigating some of
these after-effects.
It is also important to realise that cancer survivors are individuals with unique experiences, needs
and coping abilities. Stratified, integrated care pathways that take account of these differences―
and which would also be the lightest burden for the health system―are expected to yield the best
outcomes for patients and health professionals. But they are still very much the exception rather
than the rule.
Commissioned by
© The Economist Intelligence Unit Limited 2017
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