MD Anderson is Making Survivorship An Integral Phase of Cancer Care
MD Anderson News Backgrounder 10/01/07
The outlook continues to get better for people with cancer. On the strength of public awareness and early detection, and improved forms of treatment, for many patients cancer has evolved from an often-fatal disease to a chronic, treatable condition. After the detour of a cancer diagnosis, many patients go on to fulfill their lifelong dreams and ambitions.
But once you’ve battled cancer, does life ever return to normal? And what exactly is normal?
Nearly 10.5 million cancer survivors – representing 3.5% of the U.S. population – are finding out. The graying of America’s baby boomers is expected to swell those ranks to more than 18 million survivors by 2020. To appreciate the changes taking place, consider the fact 64% of adults whose cancer is diagnosed today can expect to be alive in five years. The five-year and beyond disease-free survival rate for early-stage breast, prostate and colorectal cancers exceeds 90%, with death more likely to occur from other health problems. For children and young adults, the odds are just as encouraging, with five-year survival rates now ranging between 72% and 92%, depending on the type of cancer.
To meet the needs of this growing population, MD Anderson is developing survivorship as a specialized field of cancer care working from its extensive experience in caring for patients with all types of cancer, its Life After Cancer Care Survey data and drawing on the experience and skills of “survivorists,” and other experts trained to respond to survivorship issues. In that process, the cancer center is building and expanding on an existing family of clinical, research and psychosocial programs that will, above all, serve the needs of cancer survivors and, secondly, provide a model for similar efforts around the nation and the world.
The Consequences of Survivorship
This dramatic shift for people who have experienced cancer is giving rise nationally to survivorship as a separate and distinct field of oncology care. Helping to drive the movement are the advocacy efforts of organizations like the National Coalition for Cancer Survivorship; the American Cancer Society; the National Cancer Institute and its Office of Cancer Survivorship; and collaborations like those between the Lance Armstrong Foundation and the Centers for Disease Control and Prevention, which resulted in A National Action Plan for Cancer Survivorship in April 2004. That action plan charts a strategic direction for how the public health community can more effectively and comprehensively address cancer survivorship – with the endpoint being a better quality of life for cancer survivors and a new highly personal, individually tailored definition of what “return to normal” means.
It’s a measure of the changes taking place that the term “cancer survivor” is itself evolving. When cancer was considered largely incurable, survivor often was used to describe the family members who lost a loved one to cancer. As therapies progressed, and successes mounted, survivors were defined as those whose cancer did not recur within the five years following either diagnosis or treatment. Today, the term cancer survivor is commonly used to describe an individual from the time of diagnosis through the remaining years of life. The National Cancer Institute has expanded the rubric to include caregivers and family members.
As these growing legions of adults and children are well aware, however, the end of cancer treatment does not signal the end of the cancer experience. Indeed, it marks a transition – the beginning of the survivorship journey, replete with setbacks, challenges of all types and both short and long-term successes. The side effects of a prolonged course of treatment for a life-threatening illness like cancer can exact a heavy physical toll on the body, leaving the survivor with health needs that require lifelong surveillance and evaluation. Cancer survivors face the risk of recurrence of their disease and are at higher-than-average risk of development of a new malignancy. In addition to life’s normal stressors, there also can be serious psychological, emotional and social impacts, including infertility, a career put on hold, depression, fear, anxiety, distress, withdrawal, and compromised self-image – which may be felt for years. Adding another layer of complexity is the economic hardship stemming from the incurred debt of cancer treatment, diminished income, and the possible loss of employment and health insurance.
In the final analysis, how society meets the needs of long-term cancer survivors can have a profound effect on not just their health, but the quality of life for both survivors and their loved ones. No longer are cancer survivors content with just surviving; they want to adopt a decidedly new “normal” life, even if that means adjusting to a revised set of health and wellness standards. As survivorship pioneer Dr. Fitzhugh Mullan described it more than 20 years ago in Seasons of Survival: Reflections by a Physician with Cancer: “The challenge in overcoming cancer is not only to find therapies that will prevent or arrest the disease quickly, but also to map the middle ground of survivorship and minimize its medical and social hazards.” Because they often have the greatest side effects to deal with, for the longest length of time, children conquering cancer and going about their lives, planning for decades to come, have added another dimension to the survivorship story and are helping sharpen how survivorship is viewed by the public.
Building on a Strong Survivorship Platform
Quality of life has long been integral to the treatment and care of patients at The University of Texas MD Anderson Cancer Center. In The Truly Cured Child (1977), MD Anderson’s then-chair of pediatrics, Dr. Jan van Eys, first introduced the concept that a pediatric cancer survivor should not only be cured of his cancer, but also able to fulfill all the expectations in adult life.
Subsequently contributing to the body of knowledge on survivorship are the findings of MD Anderson’s comprehensive Life After Cancer Care Survey, in which more than 11,000 survivors have shared how cancer has altered their lives.Younger cancer survivors and men were more likely to report that cancer had impacted their overall health, with arthritis/osteoporosis cited as the most frequent side effect (26% of respondents). The most common complaints among Hodgkin’s disease survivors were thyroid and lung problems (34%), while 15% of lymphoma survivors cited memory loss. All told, 65% of cancer survivors responded that the disease had affected their overall health, varying by gender and time from diagnosis.
In 2006, MD Anderson formally established a Cancer Survivorship Task Force to implement an institution-wide plan for impacting the lives of cancer survivors in the 21st century. Through the work of the task force, MD Anderson will strategically link its clinical and research resources to provide an unprecedented level of support to cancer survivors and their caregivers.
“We are in a position to play a leadership role in the emerging field of cancer survivorship because of the diversity of our patient population, and the breadth and depth of our resources,” says John Mendelsohn, M.D., president, MD Anderson Cancer Center. “Knowledge gained from anticipating, recognizing and effectively managing the long-term effects of cancer and its treatment can be translated into improved care for cancer patients from the time of diagnosis onward.”
Providing a framework for the survivorship effort is MD Anderson’s multidisciplinary, patient-centered care model, in which every patient benefits from a diverse team of cancer specialists participating in a carefully orchestrated treatment regimen. That platform has led to the development of a number of survivor programs throughout the institution. Those initiatives – now serving as models for MD Anderson’s overall survivorship plan – include the Breast Cancer Survivorship Program. Since 1997, this innovative effort has focused on the ongoing health and well-being of survivors not just through regular breast cancer screening, but by proactively addressing their medical and psychosocial needs in areas like osteoporosis, lymphedema and sexuality. Similarly, more than 1,400 young survivors have taken advantage of MD Anderson’s Pediatric Long-Term Follow-Up Clinic, which helps young people transition to adult life, serving as a critical bridge to community or adult professional services.
Research Sets the Stage
MD Anderson’s world-renowned capabilities as a research center are providing additional direction for its survivorship initiative. Studies conducted by its researchers often have led to new approaches to – or novel ways of thinking about – cancer care over a survivor’s lifetime. Prominent MD Anderson studies that have improved the quality of life of cancer patients during and post-treatment include:
- The first large-scale review detailing cardiac complications, also known as cardiotoxicity, that often occur after cancer therapy, and ways to prevent or treat them . This and subsequent studies at MD Anderson examining how aspirin and cardiac care medicine can reverse heart dysfunction in certain patients have reduced the incidence of cardiotoxicity as a treatment side effect and improved cardiotoxicity monitoring and management.
- The ongoing five-year “Steps to Health” study examining a customized fitness program to help survivors of endometrial cancer improve physical and psychological well-being. A similar study found that short bursts of exercise can help improve breast cancer survivors’ physical well-being and decrease pain.These research findings offer practical guidance to encourage patients to adopt physical activity into their post-treatment lifestyle.
- One of the first national studies to address ethnic influences on reproductive health after cancer. Researchers are collaborating with the Houston chapter of the Sisters Network – the nation’s largest African-American women’s breast cancer advocacy organization – to evaluate a new program called Sisters Peer Counseling in Reproductive Health after Treatment (SPIRIT). Through one-on-one peer counseling, the study aims to provide patients with information about menopause, sexuality, fertility and family cancer risk to improve their sexual and reproductive quality of life following breast cancer treatment. Several other clinical studies examining cancer’s impact on relationships and stress are also under way at MD Anderson.
- A study through the Integrative Medicine Program examining complementary therapies to manage side effects found that breast cancer patients who participate in a yoga program during treatment enjoy improved quality of life compared to patients who do not. The study is one of the first to incorporate yoga into the treatment regimen for breast cancer.
- Research pioneering the pain scale for cancer patients in the late 1980s paved way for the development of other innovative tools to assess multiple symptoms experienced by cancer patients. The pain scale concept has been adapted by practitioners across the country as a useful way to help patients take an active role in communicating and managing their pain. There is current research into the biologic mechanisms of the “symptom burden,” that is, the combined impact of all treatment side effects on the ability of the individual to function normally, and how to improve quality of life for cancer survivors.
Researchers at MD Anderson believe they have only begun to understand the vast world of survivorship, despite the progress that’s been made. Areas ripe for future exploration include identifying risk factors that make some survivors susceptible to the late effects of cancer therapy (or second primary cancers); looking into the psychopathology of “chemobrain,” the cognitive decline following chemotherapy and cancer itself; and understanding more fully how survivors function daily with the threat of recurrent cancer.
“Our goal is to create a new model for survivorship research and patient care that doesn’t just study the long-term consequences of cancer and its treatment, but develops innovative new programs and services to improve the lives of cancer survivors,” states Thomas Burke, M.D., Executive Vice President and Physician-in-Chief at MD Anderson, and executive leader of the MD Anderson Cancer Survivorship Task Force. “Given the skills and experience of our team, few cancer centers are better qualified than MD Anderson to carry out this mission.”
Putting the Pieces Together
One of the ways MD Anderson is reviewing and beginning to organize its plan for integrated multidisciplinary survivorship programs is by using distinct “domains” – physical, psychological, social, spiritual and economic. Identified in previous reports by the American Cancer Society, the National Cancer Institute and the Centers for Disease Control, these aspects are known to have the greatest impact on cancer survivors and their families.
Even for patients who are “cured,” the physical consequences of cancer treatment can be devastating. Depending on the cancer site and type of treatment, they include pain, fatigue, weight loss, edema, sexual dysfunction, infertility, hair loss and more. Further, while some physical symptoms decline or disappear after treatment, others may persist over a lifetime. They can include heart problems, arthritis, osteoporosis, memory loss, early onset of menopause, cataracts, and kidney and bladder disorders. Finally, some survivors face the challenge of disfigurement, amputation, extensive reconstructive surgery, or temporarily or permanently compromised cognitive functionality.
Three of the areas where MD Anderson has addressed the physical consequences of cancer treatment are in palliative care, fatigue and pain. For many years, the physical needs of cancer survivors were managed through extensive rehabilitation services and palliative care offerings in a variety of clinical and educational settings. A Department of Symptom Control and Palliative Care was formally organized in 1999. Fatigue – which can creep up at any time and leave a patient without energy to perform even the simplest tasks – is the most common and overwhelming side effect of cancer treatment. Specialists at MD Anderson’s Cancer-Related Fatigue Clinic help survivors reduce or even eliminate their symptoms through medication, exercise and alternative therapies such as meditation, relaxation and self-hypnosis. In addition, a Pain Management Center provides advanced treatments and techniques available to help patients and survivors cope with acute and chronic pain.
To ensure a smooth and dependable continuum of care – whether it’s at MD Anderson or transitioning patients to professionals outside its walls – the cancer center is piloting a “survivorship passport.” The passport will be a compact summary of the survivor’s treatment history, any current medical problems requiring observation, and the oncologist’s recommendations for future care.
In the area of patient education, MD Anderson has established one of the largest programs of any cancer center. Providing information to help patients better understand the physical effects and management of their disease, patient education is pervasive, beginning at diagnosis. At the heart of this effort are the institution’s four Learning Centers, free consumer health libraries that are also open to caregivers and the public. On-site classes, CD-ROM materials and myMDAnderson – a secure, personalized Web site that allows survivors to take an active role in their treatment – are additional tools for keeping survivors informed and connected to support services.
Diagnosis and treatment for cancer can throw an individual into a web of fear, anger, depression, anxiety and helplessness. According to the Department of Psychiatry at MD Anderson, an estimated 25% of cancer patients experience depressive disorders, compounded by the knowledge their cancer could return. Other psychological effects include a loss of self-esteem that may make intimacy with partners difficult to re-establish. These emotions can diminish with time, but don’t necessarily disappear once active treatment is finished. For childhood cancer survivors, the psychological issues may be even more challenging, involving self-image, socialization and transitioning back to school settings and eventually coping with a new set of issues as they grow older, including sexuality and fertility. Stress and anxiety can also extend to family members and caregivers, who share the patient’s concerns.
Survivors are as much in need of psychological and emotional support to relieve fears and anxieties as they are of physical/clinical care. Moreover, they crave greater clarity around what they can do personally to achieve favorable outcomes. With those needs in mind, the center aims to treat the whole person through an Integrative Medicine program with complementary therapies available through Place…of wellness, the first facility of its type at a major cancer center . Place…of wellness is a one-stop, venue that offers more than 75 complementary mind/body therapy programs – most of them without charge – to promote wellness and improved symptom management among patients, survivors and their caregivers. These programs, which also serve as a rich resource for new research, include yoga and tai chi, massage and music therapy, meditation, acupuncture and expressive writing, to name a few.
On the clinical side, the Department of Psychiatry provides counseling to recently diagnosed patients as well as cancer survivors. To better meet psychosocial needs, one goal is to screen every patient at regular intervals for signs of psychosocial distress, using tools like the National Comprehensive Cancer Network’s Distress Thermometer, which measures the level of patient distress on a scale of 0-10, and the specific problems associated with it. Another long-term goal is to more effectively transition patients back to behavioral health specialists within their communities.
Social distress – often tied to a patient’s insecurities and perceived shortcomings – may mount as survivors attempt to reclaim their previous lives, both social and professional. Some find diminished self-image and a sense of social stigma associated with their disease make it awkward or difficult to interact with friends or co-workers. Childhood and young adult survivors are particularly vulnerable as they attempt to reenter classrooms or join the work force without the social skills or life experiences needed to sustain them. Often, they require the intervention of professional counselors or learning specialists.
Understanding that cancer can be a lonely experience, in 1985 MD Anderson formed the Anderson Network, which remains the nation’s largest and most comprehensive volunteer cancer support organization based at a major cancer center. Through 15 different programs, more than 1,200 survivors (six-months post-treatment) offer support and encouragement to the newly diagnosed – regardless of where they are being treated. The telephone support line matches patients or caregivers in need with someone who’s had the same diagnosis and treatment or experience – in short, someone who understands their anxieties, fears and concerns. In 2006, the Anderson Network made more than 950 patient and caregiver matches through the telephone support line and helped countless others through various programs. In late 2007, it will add a Pediatric Caregiver Telephone Support Network.
Similarly, the network provides support to caregivers who wish to relieve the stress of caring for a loved one with cancer by talking to someone in the same role. MD Anderson’s Learning Centers also serve as a valuable resource for survivors and caregivers who want more information on getting around the roadblocks cancer has placed in their path.
For many patients, cancer is more than a disease – it’s a test of faith. Some may wrestle with the question, “Why me?” or see cancer as a form of punishment. Others, however, gain strength from their faith and let it help guide them through their difficult journeys.
The spiritual needs of MD Anderson patients are supported by one of the largest chaplaincy programs of any medical institution in the country. Chaplains trained to work with cancer patients represent a number of denominations, reflecting MD Anderson’s diverse patient population. For many, this program assumes a powerful presence, helping patients reaffirm their faith or beliefs as part of the ongoing healing process. Indeed, the pivotal role of chaplaincy is echoed in the results of a survey, conducted at a recent Anderson Network conference, showing that spiritual care was the area in which survivors reported that they had received the most active support.
Further meeting the needs of survivors is the unique and growing Spiritual Pathways weblog that invites cancer patients and survivors, along with members of the faith communities, to share news, spiritually uplifting stories and helpful advice.
Cancer exacts a significant financial burden for some survivors. They may leave treatment in heavy debt, be forced into early retirement, or lose their jobs during the demanding treatment cycle. If they eventually change employers, they may be unable to qualify for health insurance or an affordable life insurance policy. Childhood cancer survivors may never qualify for health insurance as adults.
Among families filing for bankruptcy in the United States, cancer was found to be the most costly reported illness, with annual out-of-pocket medical expenses averaging $35,000. Like other hospitals, MD Anderson employs a variety of resources to help patients navigate the complex payment and third-party reimbursement system during their cancer journeys. Patient access specialists begin the process by verifying a patient’s insurance and explaining costs, both for the insured and the uninsured. Financial case managers work specifically with cancer inpatients and their families to ensure that treatments recommended by the physician will be covered by the patient’s insurance. For cancer patients and their families who may encounter direct medical expenses that exceed their financial limits, case managers are equipped to help identify additional resources. Social workers are available to help with indirect expenses such as lodging and transportation to and from appointments.
On a broader scale, survival can be just as daunting from the employer and societal perspectives – areas that have rarely been explored. For employers, the stress of dealing with absenteeism and reduced productivity can amount to significant costs. Society faces a similar increased pressure under a taxed health care system with scarce resources to cover cancer care costs. According to the National Institutes of Health the total annual financial impact of cancer in the United States is estimated at $209.9 billion with $74.0 billion in direct medical costs, another $17.5 billion in lost productivity due to illness and $118.4 billion in lost productivity due to premature death.
MD Anderson’s Department of Clinical Revenue and Reimbursement is studying the universe of costs associated with survivorship to better understand the overall economic and financial impact on patients, employers and society. By helping to fill the information void that now exists in these areas, MD Anderson hopes to develop effective cost models that could lead to new and better ways for survivors and the health care system to financially cope with cancer.
Making Survivorship the “New Normal”
With each new cancer survivor comes a “new normal.” As survivors experience the multidimensional and varied impact of cancer along the physical, psychological, social, spiritual and economic realms of life, they learn to live with these changes, enduring the trials and enjoying the successes their journey brings. By applying a patient-centered care model through science and research to survivorship, MD Anderson is taking a leadership role in addressing the vast universe of unknowns facing cancer survivors after treatment. Translating these findings into an expansive and convenient network of specialized resources, both on campus and within the community, will further help define what’s next, or “normal,” for patients transitioning from active patient to survivor. A look down this road finds the experience of a survivor at MD Anderson woven tightly to the multidisciplinary spirit of the institution. Recommended short- and long-term follow-up care will be charted out in advance based on disease site and course of treatment; psychological, social, economic and spiritual support networks will be integrated into the traditional patient care team; ongoing, two-way contact and follow-up will be maintained through interactive portals and above all, innovative strategies will help keep patients healthy and productive – in their “new normal lives” – for many years to come.