The National Institutes of Health (NIH) estimates overall costs for cancer in 2010 at $263.8 billion: $102.8 billion for direct medical costs (total of all healthcare expenditures), $20.9 billion for indirect morbidity costs (cost of loss of productivity due to illness), and $140.1 billion for indirect mortality costs (cost of lost productivity due to premature death) (American Cancer Society 2010 Facts & Figures).
The Institute of Medicine (IOM) developed a plan for four key aspects of cancer survivorship care. These elements were recorded in their document entitled Lost in Transition, which was published in 2005. Although this document has been well publicized within the oncology community, it continues to be a challenge to implement. These elements are:
- Preventing and diagnosing new and recurring cancers
- Ensuring surveillance of existing or new cancers
- Developing a plan for addressing the negative effects of treatment
- Creating a coordination plan ensuring the well-being of cancer survivors
In order to accomplish this, it was recommended that healthcare providers assume responsibility in some manner to develop a survivorship care plan for each patient. The plan should describe all treatment and posttreatment care, including the following:
Giving survivors a record of the cancer care they received, including screening and diagnostic tests, information about their cancer, type of treatment, its duration, and contact information of all physicians involved in their treatment.
Giving survivorship posttreatment standards of care, which include the health and personal effects of treatment, risk of recurrence, healthy lifestyle behaviors to follow, resources for supportive service (legal, financial, counseling, etc).
Patient navigators have emerged, increasing patient access to screening, information, resources, and cancer care. The navigator’s role is one of ensuring timely diagnosis and treatment, serving as a patient advocate, coordinating doctors’ visits and tests, arranging transportation when needed, referring for insurance assistance, and providing emotional support. This is an opportunity for patient navigators to initiative survivorship care at the time of diagnosis rather than seeing it as an assignment to be accomplished when treatment is completed. Cancer survivorship is not a point in time but instead is a process.
Navigation has for a long time focused on barriers that prevent patients from receiving diagnosis and treatment. There are also barriers to healthcare for cancer survivors. The IOM defined these barriers as follows (IOM Lost in Transition):
- Limited or lack of health insurance (even those with insurance may lack funds for copayments)
- Coordinated care
- Posttreatment care
Although all of the above-listed information remains the goal, it is difficult to accomplish. For the most part, no additional resources exist to create these documents, and, once created, there is a lack of resources to help ensure that the information they contain was reviewed with the cancer survivor. An additional consequence is ensuring that the posttreatment monitoring and care occurs. This requires a great deal of tracking and follow up that does not currently exist within the cancer center infrastructure, unless the survivor is followed by their oncology specialists long term.
It is important to note that the length of survivorship does not correlate with a diminishment of concerns about the cancer. Chronic physical problems, continued thoughts about recurrence, nervousness associated with medical follow-up, concerns regarding health insurance coverage, and other social concerns remain significant issues for many long-term cancer survivors (Polinshy 1994). So if a patient is 1 year posttreatment or 5 years posttreatment, he/she may still be feeling anxious and worried about a variety of issues all related to their cancer diagnosis and treatment.
Quality of life has become a standard means of assessing patient outcomes. This is good news for patients. Historically, the focus had been specifically on survival as the outcome. If the patient “became” a cancer survivor, then the case was considered a “success.” If the patient died, then the case was not successful. Today more attention is being paid to quality of life, and the pressure to address issues that are impacting a survivor’s quality of life is primarily coming from the patients themselves. Survival is no longer “enough”; they want to feel good, look good, and have a sense of wellness physically and psychologically. For example, approximately 10% to 25% of cancer survivors develop depression, a rate four times higher than the general public (IOM Lost in Transition).
Some cancer survivors, despite experiencing many unfavorable long-term changes that impact their quality of life after completion of their treatment, do report that they have experienced positive benefits too, which has provided balance (Dow et al 1996).
The IOM has also defined specific measures associated with measuring quality of survivorship care. These are listed below:
Potential Survivorship Quality of Care Measures (IOM Lost in Transition)
Processes of Care
- Provision of a survivorship care plan—a written posttreatment summary outlining the proposed follow-up plan
- Assessment of psychosocial distress, referral to mental health providers
- Assessment of employment, insurance, and financial issues, referral to rehabilitation and social workers
- Provision of written information on available community support services
- Adherence to evidence-based follow-up and surveillance guidelines, where available
- Avoidance of use of inappropriate/unnecessary scans and tests
- Adherence to adjuvant therapy (ie, hormonal therapy for breast cancer survivors)
- Assessment and management of pain
- When appropriate, referral to enterostomal care
- When appropriate, referral for lymphedema management
- When appropriate, assessment of sexual function and referral to sexuality counseling
- When appropriate, referral to genetic counseling
- Recommendation of exercise for fatigue
- Smoking cessation counseling, if needed
Survivor Assessments of Care
- Ratings by survivors of their satisfaction with care, coordination of care, and quality of care
National Coalition of Cancer Survivorship (NCCS) has identified three elements essential to quality cancer care:
- Access to services
- Appropriate timely referrals
- Access to clinical trials
- A goal of practice guidelines should be to help empower patients by educating them about what questions to ask as informed healthcare consumers
- Well-researched quantitative and qualitative data on the patient’s experience should be used to inform the guideline development process
- Guideline developers need to keep in mind that the focus of clinical guidelines is not the disease itself but rather the patient with that disease (Stoval 1996)
NCI Office of Survivorship: Research Activities
- Physiological late effects in cancer survivors 5 or more years after receiving a diagnosis of cancer, including cardiac, renal, and cognitive complications
- Development of long-term follow-up studies of survivors, in concert with cooperative groups, cancer centers, and the Surveillance, Epidemiology, and End Results program registries
- Factors that predispose cancer survivors to the development of second malignancies
- Reproduction and fertility problems posttreatment
- Economic issues and questions concerning ongoing medical care
- Quality-of-life issues, especially among medically underserved populations and long-term survivors
Patients need access to information. We must recognize that each patient has a unique way of learning and coping. Cultural issues can impact learning and understanding as well. Educational levels widely vary. All of this impacts how involved a patient personally wants to be in decision- making as well as their desire for information. Barrier assessment is important regarding these issues. Survivors may need specific help and assistance to understand the information provided and how to use it. Psychosocial issues can complicate this further and, therefore, must be addressed. The IOM Committee on Psychosocial Services to Cancer Patients/Families in a community setting reported that it is imperative to directly address a patient’s psychosocial issues and needs in order to provide the most comprehensive cancer care.
IOM Lost in Transition outlines Psychosocial Issues to be addressed:
- Fear of recurrence, concerns about future and death
- Depression, sadness (10%-25%)
- Inability to make plans
- Adjustment to physical compromise, health worries
- Sense of loss for what might have been (loss of fertility)
- Uncertainty and heightened sense of vulnerability
- Alterations in social support
- Fears regarding accomplishment of adult developmental tasks
- Existential and spiritual issues
- Psychosocial reorientation
- Sexuality, fertility, and intimate relationships
- Concerns about parenting
- Employment and insurance problems
- Relationship with the treatment team
- Feelings of gratitude and good fortune
- Sense of self-esteem and mastery
Psychosocial support is critically important for all cancer patients (Montazeri, Jaravandi Dec 2001; Golant Altman Feb 2003; Liberman Golant Feb 2003)
- Support groups
- Internet-based chat rooms
- Mental health counseling
- Patient education one-on-one
- Patient education conferences
- Support by navigators
- Understanding changes in relationships (patient and family)
- Body image changes
- Physical capacity
- Depression, anger, fear
- Feelings associated with loss of control/loss of independence
- Memory loss
- Cognitive functioning problems
- Participation in any psychosocial support services has been shown to reduce anxiety and depression and generally improve quality of life for cancer survivors.
Patients are reluctant to ask for help with emotional well-being. There is a stigma regarding mental health support. This is one of the most common barriers for people with cancer—accessing mental health services (Matthews, Corrigan, July 2003).
“Addressing psychosocial needs should be an integral part of quality cancer care”— should be part of policies, practices, and standards… (Adler, Page, 2008).
Long-term survivorship—it will require self-management and patient accountability. Patients need to become their own advocate to some degree. Patient empowerment is critically important (LDS).
The need for educating providers regarding long-term survivorship issues and needs—primary care physicians, gynecologists, nurse practitioners in primary care, providers in survivorship clinics.
The need to incorporate this type of medical and nursing education into training must also happen.
- Time missed from work
- Child care expenses/elder care expenses
- Homecare expenses
- Lost wages
- Fertility clinic
- Loss of employment
- Placed into a different job
The ripple effect of these factors can result in the “creation” of an underserved survivor (LDS). This is fertile ground for navigators to begin to tackle cancer survivorship and incorporate the barrier assessment, guidelines for follow-up care, measurement of success based on quality of life, and other measures as part of the navigation role. Consider requesting to become a part of the oncology team working on the development and implementation of the cancer survivorship program for your patients at your institution.