Cancer mortality has significantly decreased due to screening, early detection, improved
diagnostics, treatments, and supportive care.[1] Worldwide, an estimated 28.4 million new cancer cases are projected to occur in
2040.[2] Cancer survival in the United Kingdom has doubled in the past 40 years from 24 to
50%.[3] By 2040, we expect around 26 million cancer survivors in the United States of America.[4] The total global cancer survivor population, including Asia, could be over several
million. Undoubtedly, every healthcare provider will encounter a cancer survivor in
their practice. The care of cancer survivors is often uncoordinated, incomplete, and
tends to be fragmentary. Significant improvements in cancer survivor care are necessary
in most parts of the developing world by implementing the core essentials of cancer
survivorship care, such as ASCO, ESMO, National Academies of Sciences, Engineering
and Medicine, and National Cancer Survivorship Resource Center (The Survivorship Center).[5]
[6]
[7]
We summarize this topic through a set of questions and answers. The core essentials
of cancer survivorship care will be outlined, and finally, we will discuss a few methods
of its implementation in our region.
What Is Cancer Survivorship?
What Is Cancer Survivorship?
This term has been there for several decades and recently achieved greater attention
as more and more individuals live with and beyond cancer. It is a phase of the cancer
continuum that begins with prevention and risk reduction, cancer screening, diagnosis,
treatment, survivorship, and then carries on to the end-of-life care. Cancer survivorship
focuses on the health and life of an individual diagnosed and living with and beyond
cancer through the end of life.[8] It covers cancer's physical, psychosocial, and economic issues beyond the diagnosis
and treatment phases. Survivorship includes issues related to getting health care
and follow-up treatment, recognition of late effects of treatment and management,
detection of second cancer, and promotion of quality of life.
Who Are Cancer Survivors?
Who Are Cancer Survivors?
The term cancer survivor is used in various ways and sometimes confuses. For most
caregivers, the focus is often on those who have completed active treatment, but an
individual is considered a cancer survivor from the time of diagnosis through the
balance of his or her life. There are many types of survivors, including those living
with cancer and those free of cancer. The term is meant to capture a population of
those with a history of cancer. We must understand that the term may or may not resonate
with specific individuals.
Cancer survivors can include those who are cancer-free after treatment for the remainder
of life. Cancer survivors are cancer-free but has one or more late severe complications.
Cancer survivors remain cancer-free for many years but then develop late recurrence.
Cancer survivors then develop many other new second and third primary cancers. Cancer
survivors also suffer from intermittent periods of active disease, requiring treatment,
or those living with cancer continuously with or without treatment, without a disease-free
period. It is important to emphasize that specific individuals do not wish to use
cancer survivors as a term to describe themselves or their experiences.
Survivorship Facts and Figures
Survivorship Facts and Figures
According to the American Cancer Society, currently over 16.9 million cancer survivors
live in the United States; the number is projected to grow 26 million by 2040.[4] There are over 12 million cancer survivors in the European Union.[9] In the rest of the world, an approximate estimate would be several additional million.
The growing survivor population is due to many factors, including an aging population,
screening tests, early detection, improved treatments, outcomes, and supportive care.
Cancer survivors are mostly 65 years of age or older, with ∼64% of the cancer survivor
population. Nevertheless, younger survivors, those below age 50, account for 10% of
the population.[4] Older survivors are more likely to have morbid medical conditions like heart disease,
chronic obstructive pulmonary disease (COPD), chronic kidney disease (CKD), and diabetes,
thus requiring additional consideration when planning for long-term survivorship care,
including the need for care coordination. Disparities in cancer survivorship do exist.
Cost, access to treatment, and follow-up are the most important reasons.
The increasing survivor population has widespread implications for the healthcare
system. This growing population is too large for oncology providers to care for them
alone. It comprises an older population with complex medical needs and a population
that requires coordinated care from oncology providers, primary care providers, and
other specialists. In the Western world, primary care providers are getting prepared
to directly care for cancer survivors and share and coordinate care with other healthcare
professionals.
Areas of Focus in Cancer Survivorship Care
Areas of Focus in Cancer Survivorship Care
[Table 1] presents the areas that should be considered when caring for any cancer survivor.[10] Usually, it starts with focusing on preventing and detecting recurrences and new
cancers. This is often the main focus of oncology specialists. This may include clinical
visits with taking history of symptoms, physical examination, laboratory testing,
and imaging. Next follows the evaluation and treatment of the physical effects of
cancer and its treatments. These effects may include surgery, chemotherapy, hormonal
treatment, immunotherapy, targeted agents, and radiation therapy. The knowledge and
experience of recognizing the physical effects of cancer and its treatments are strengths
of oncology providers. However, we suggest primary care providers equip themselves
with this knowledge by self-learning survivorship programs.
Table 1
Core essentials of survivorship care
|
1 Prevention or detection of recurrences and new cancers
2 Evaluation and treatment of physical effects of cancer and its treatment
3 Evaluation and treatment of psychosocial effects of cancer and its treatment
4 Evaluation and treatment of chronic medical (noncancer) conditions
5 Health promotion and disease prevention
|
Healthcare providers should ask survivors about physical symptoms that they are experiencing;
healthcare providers should be on the lookout for specific symptoms and problems that
may occur as a result of treatment and be sure to evaluate and treat these when they
are diagnosed. This may require referral to specialists who are best equipped to provide
such care. Similarly, healthcare providers must focus on the psychosocial effects
of cancer and its treatment. This may include psychological issues such as depression,
anxiety, and fear of recurrence. Also, issues on finances, employment and school,
and interpersonal issues such as relationships with loved ones, sexuality, and intimacy
are relevant. Again, healthcare providers must ask survivors about symptoms they may
be experiencing and find ways to treat them. This may be with medications, psychotherapy,
or other means. Referral to specialists may be needed.
Most cancer survivors are older and may have chronic medical conditions prior to diagnosis.
These must not be ignored and are given the appropriate attention. This may mean ensuring
that survivors continue to see their primary care provider and/or other specialists
and that attention is placed on making sure that they adhere to treatment recommendations
for these medical conditions. Taking stock of medications being taken is essential.
Finally, attention to health promotion and disease prevention is necessary for cancer
survivorship. This includes exercise, a healthy diet, reducing alcohol use, quitting
smoking, and getting the appropriate preventive care, including vaccinations. While
focusing on these areas, it is essential to pay attention to the overall healthcare
environment in which the patients are receiving their care and be sure that communication,
decision making, coordination of care takes place and that the needs of each patient
are being considered, of evident importance is that the patient or individual factors
are clearly emphasized. Stress may not need to be placed on all of these areas equally.
They must be considered and addressed if needed for each patient individually.
Who Should Provide Cancer Survivorship Care?
Who Should Provide Cancer Survivorship Care?
Cancer survivors are traditionally taken care of by oncology care providers. There
is general reluctance from primary care providers to follow patients with a history
of cancer. Oncology care and primary care address different aspects of care. Oncology-
centered care is cancer-focused. It includes much attention on cancer, surveillance,
and recurrence. Other conditions, or comorbidities, are often not the focus of oncology-centered
care.
On the other hand, primary care is focused on general well-being, including care for
chronic conditions and disease prevention. Considering the long-term and late effects
of cancer and its treatment and psychosocial care directed toward the effect of cancer
may or may not be adequately addressed by either oncologists or primary care providers.
It may depend on their knowledge, training, and confidence in providing cancer survivorship
care for primary care providers.
There are benefits and challenges to oncology-centered and primary-centered care.[11]
[12]
[13]
[14] Providers have differing familiarity and training. Oncology providers are more experienced
than primary care providers in offering cancer-related care. Cancer survivors often
have more confidence in their oncology providers regarding survivorship care, especially
after building a relationship during their cancer treatment. This can create a loop
where survivors seek out oncology providers first rather than their primary care providers.
This also creates fewer chances for primary care providers to gain survivorship care
experience.
On the other hand, primary care providers have more experience caring for heart disease,
COPD, CKD, or diabetes. Oncology providers are not equipped to provide such general
care, including regular screenings and tests for comorbidities. This can create a
gap where patients continue to see their oncology provider for all care but do not
receive the necessary screening tests or treatment for these medical conditions.
Nevertheless, most cancer survivors need to return to primary care, even though they
may be reluctant. Cancer survivors have more trust established with their oncology
providers and have negative concerns that primary care providers may not be able to
provide survivorship care. There is also a lack of clear communication about the plan
for survivorship care. One important strategy is to communicate clearly with survivors
about expectations for posttreatment survivorship care. It is also essential that
the primary care providers remain involved even during cancer treatment. As treatment
winds down, survivors can work with their providers to properly develop their posttreatment
care plans.
What Happens When Treatment Ends?
What Happens When Treatment Ends?
Survivorship care consists of many moving parts across multiple providers. Several
recommended models for survivorship care have been recently proposed, including shared
care, risk-stratified, or personalized care. Regardless of the model, providers must
communicate across specialties. Survivors should feel empowered and be included as
members of their care team to ask questions, make suggestions, and communicate freely
with their providers. Survivors receive regular screening and surveillance for both
cancer and late effects, and they also receive disease management for chronic conditions
and counseling and support for healthy lifestyle behaviors like smoking cessation,
diet and nutrition, and physical activity.[15]
[16]
Unfortunately, the reality is typically fragmented survivorship care. Providers do
not usually communicate across settings through electronic health records or written
communication. It can be challenging for providers to navigate the relationships between
survivors and their oncology providers. Additionally, oncology providers lack training
and education for general care, while primary care providers lack training and education
for cancer-specific care. This mismatch in confidence and skills can impact the quality
of care provided. It can also be confusing for survivors because it is unclear who
has responsibility for what care. For example, who is supposed to do cancer screening
for other cancers? Expectations for cancer survivorship care are changing, and the
cancer survivor population continues to grow. These are all factors to consider when
caring for survivors and working toward less fragmented care.[17]
Strategies for Primary Care Providers
Strategies for Primary Care Providers
There are several practical tips to improve survivorship care in primary care settings.[15] Ask patients about their cancer history, including their personal and family members'
histories. Request oncology treatment records and survivorship care plans and document
treatment and care need in the electronic health record. Participate informal, for
example, continuing medical education and informal training to increase understanding
of cancer-related, chronic, and late effects. Learn how to co-manage patients during
active treatment and ongoing oncology-based follow-up care. Participate in educational
activities to increase comfort and skills in providing follow-up care for patients
with cancer who are transitioned from oncology care. Refer patients who previously
received extensive cancer treatment and/or those experiencing chronic and late treatment
effects for specialized survivorship care. Work toward supporting patients who are
doing well in self-managing their health outside of surveillance visits. And lastly,
build bridges with oncology to understand survivors' risk and ongoing healthcare needs,
Strategies for Oncology Care Providers
Strategies for Oncology Care Providers
There are several strategies for oncology care providers to improve survivorship care
in their settings[16] These include promoting survivors' transition back to primary care. Examination
of current patient rosters, clinic utilization patterns, and new patient visits lots
and consider shifting care of low-risk low needs survivors to primary care. Begin
to triage patients who need specialized follow-up care to survivorship clinics. From
the time of diagnosis, communicate to patients that they will be expected to continue
to be followed by their primary care provider and likely transition back to their
primary care provider or a follow-up cancer survivorship clinic after treatment ends.
Reinforce expectations about follow-up by ongoing communication throughout cancer
treatment. Survivorship care plans for every cancer survivor should be completed as
treatment ends—work toward supporting patients who are doing well in self-managing
their health outside of clinic visits. Build bridges with primary care to better equip
primary care providers with information that they need to care for their patients
who are cancer survivors, coordinate care, and facilitate referrals back to oncology
if needs arise.
Conclusions
As the cancer survivor population grows, primary care providers and oncology care
providers will need to be well equipped to care for cancer survivors' complex healthcare
needs and think about referrals to necessary subspecialists. The care needs include
long-term and late effects, psychosocial needs, and healthy lifestyle behaviors. Primary
care providers and oncology providers need to build bridges to equip each other so
that their patients receive the best care.
