Challenges Patients Face in Cancer Care: Implications for the Healthcare Team

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Lea Ann Hansen PharmD, BCOP

Cancer is an illness associated with substantial physical, emotional, social, and financial ramifications for affected individuals and their families. In a significant number of cases, the diagnosis of cancer is either preceded by a period of gradual, nonspecific symptoms or discovered by routine screening, and individuals are then thrust into a whirlwind of diagnostic testing, invasive procedures, and complicated treatments with very little warning or opportunity to assimilate their circumstances. Frequently, a multidisciplinary approach to treatment is necessary, requiring patients to engage with numerous medical teams comprising several different specialties, often in different locations. Many patients have been relatively healthy prior to the cancer event and therefore are not sophisticated consumers of medical services. Consequently, it is incumbent on healthcare professionals to be able to facilitate patients’ transition into care in order to minimize their distress and maximize their clinical outcomes.

Challenges exist beyond the initial diagnosis and treatment period as well. According to the National Cancer Institute (NCI), more than 12 million individuals in the United States are living with a history of cancer.1 More than half are living well beyond 5 years after diagnosis. Women comprise a majority of longterm survivors due to the favorable outcomes with breast, cervical, and uterine cancers.2 The number of people living with a history of cancer is projected to grow considerably over the next 20 years for 2 major reasons. First, the number of Americans over age 65 is predicted to double between the years 2000 and 2030.3 Consequently, as a disease primarily of older adults, cancer will also increase. Second, as the effectiveness of cancer treatments improves, the number of patients cured of the disease will increase, and an even larger percentage will be living longer with the disease while receiving multiple “lines” of therapy (first-line, second-line, etc) over time. The overall demand for oncology services is expected to increase by 48% by 2020, while the supply of oncologists will increase by only 14% based on current patterns.4 These statistics underscore the need for a wide variety of health professionals and other support personnel to play a part in enabling each and every patient to receive quality care that addresses all of their needs throughout the continuum of the illness. Patients define quality of care based on their ability to5:

Figure
Table 1. Informational Needs Assessment Tool for Prioritizing Education
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  • Obtain information about their care
  • Participate in decision making
  • Trust their physician
  • Communicate their feelings to providers
  • Believe that their care is well coordinated

In light of these principles, this article will address a number of facets of cancer and its treatment that present challenges to patients with the goal of providing strategies to reduce barriers and enhance quality of care.

Getting Information
Upon being told of a diagnosis of cancer, patients will have many information needs but may not always be able to verbalize their questions or retain the facts presented during the stress of receiving such catastrophic news. The presence of a trusted family member or friend can be beneficial. Clinicians should plan the initial informational interactions carefully, not only to convey important technical details, but also to potentially shape the therapeutic relationship for weeks and months to come. Research has shown that dissatisfaction with medical information is related to the development of anxiety and depression.6 The amount of information does not seem to be correlated with dissatisfaction and distress as much as the lack of consideration of the patient’s preferences for the type of information provided. In a controlled trial, patients and spouses who received an individualized intervention based on their responses to an “Informational Needs Assessment” were more satisfied and gained more knowledge than a counterpart control group.7 The assessment tool asked patients to rate the importance of the topics shown in Table 1.

The American Society of Clinical Oncology maintains a Web site for patients at www.cancer.net that contains a variety of patient information materials, including a comprehensive list of “Questions to Ask the Doctor” that patients can use to facilitate more active participation in their care.8 The Web site emphasizes that patients should think about how much information they would like to know, tell their doctor about their preferences, and consider writing down their questions before the appointment. While the topics surrounding the specifics of the patient’s cancer and treatment are crucial, a survey of 1000 individuals with colon cancer revealed the most common areas of information deficiency were changes to be expected in their work or usual activities, relationship with spouse or partner, and sexual activity.9 One method of providing individualized information is the Michigan Tailoring System, an opensource software package that is available to writers who want to develop content based on specific information known about a person.10

Many Americans have a low skill level regarding numbers and mathematical concepts. For example, approximately half of the adults are unable to accurately calculate a tip, and 20% of college-educated persons do not know whether 1%, 5%, or 10% represents a higher risk.11 In addition, patient education materials are often written at a high school level, making them inaccessible to many readers (in the United States, 14% of the population has less than a high school education, and the average reading level is 8th grade).12 These difficulties make the cognitive demands of a cancer diagnosis greater since decisions require consideration of scientific concepts with risk and benefit statistics. The Centers of Excellence in Cancer Commun ications Research, supported by NCI, has published a comprehensive review of communication methods with empirical support for improving patients’ decision-making processes, which are summarized in Table 2.

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Table 2. Communication Methods Shown to Improve Patient Decision Making
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Language proficiency and cultural factors are also important considerations for health information acquisition by immigrants for whom English is a second language. 14 According to the 2010 US Census, 8.7% of all residents speak English less than “very well,” and 20.6% speak a language other than English in the home.12 The most common other language is Spanish; Hispanics are the largest and fastest growing minority in the United States, with over 50 million individuals self-identifying this ethnicity. Based on information in the 2005 Health Information National Trends Survey, Spanish-speaking Hispanics who sought cancer information indicated their search took a lot of effort (67%), was hard to understand (54%), and frustrating (42%).15 Studies have shown that foreign-born patients with cancer are less likely to receive recommended therapies and to report receiving excellent care when compared to US-born patients.16 Preliminary data indicate that a language-concordant physician can improve quality of cancer care, but this is not a readily available option.17 Interpreters are commonly utilized, although family members can be problematic due to their tendency to take control over the information and insert their own biases into the decisionmaking process.18 Even bilingual nurses, if untrained, can commit many errors. One study demonstrated an average of 31 errors per encounter (predominantly omissions on topics such as allergies and instructions on dose and frequency).19 The most clinically significant errors occurred with ad hoc interpreters rather than professionals. Whenever possible, an independent, trained medical interpreter should be utilized and conversations supplemented by written materials in the patient’s language.

In addition to taking heed of a patient’s preferences and language needs when providing information, other aspects can affect the success of communicating information about cancer. A systematic review of factors affecting communication with adult cancer patients identified a number of factors that promote effective interchange between providers and patients and other factors that are inhibitive.20 Promoting factors include genuineness and competency in the healthcare provider and active participation on the part of the patient. When healthcare providers are task oriented, have low self-awareness of their own verbal behaviors, exhibit blocking behaviors, and are in an environment of staff conflict, communication is hindered. Patients who seem unwilling to discuss their disease or feelings, showing a preference to seek support from family or friends, and those patients who give only subtle cues about their information needs (sometimes based on cultural norms) also deter effective interchange.

Finding Emotional and Social Support
Upon hearing a diagnosis of cancer, the patient is faced with a multitude of issues. In addition to the medical and logistic details described previously, major concerns include fear of death, disfigurement, pain, disability, infertility, dependency, abandonment, altered relationships, and financial hardship.21 Overall uncertainty has been suggested to be the single greatest source of psychosocial distress in patients affected by serious illness.22 Typically, the initial characteristic response is one of shock and denial, the duration of which is highly variable. The second phase is usually filled with emotional turmoil consisting of feelings of anxiety, depression, irritability, insomnia, poor concentration, and inability to function. After 1 to 2 weeks, with support from family, friends, and healthcare providers, the patient usually returns to previously used coping strategies unless ongoing uncertainty is overwhelming.

General recommendations for coping with the psychosocial aspects of a cancer diagnosis include23,24:

  • Recording feelings through a journal, photography, drawing, or music so that as time goes on, one may be able to see that things are improving
  • Continuing to do usual activities such as hobbies or household tasks, which is good for distraction and a feeling of control
  • Spending time doing normal activities with family and friends to have fun and strengthen relationships
  • Accepting support offered by friends to decrease stress and fatigue and help the friends feel as though they are contributing
  • Finding out about local and national support groups and counseling professionals
  • Avoiding emotionally draining situations and being willing to say, “I would like to sit quietly while you keep me company” or “I need to spend some time alone right now”
  • Taking time to meditate or pray regularly, reading spiritual texts, and/or retreating to a spiritual space, to help bring a sense of calm and stability

At least 50% of all cancer patients develop an ongoing psychiatric complication, and 1 in 3 is experiencing severe psychological distress at any one time.21,25 These conditions are often not detected by health professionals. Distress screening in the clinical environment can be used to detect persons who may benefit from additional emotional support. The development of “ultrabrief” screening tools has been a focus of the psycho-oncology community for a number of years. These instruments require fewer than 5 minutes to complete and are practical to utilize in a busy office setting. The distress thermometer (DT) is recommended by the National Comprehensive Cancer Network for use at the initial visit, at regular intervals, and as clinically indicated during changes in disease status.26 The DT instrument is a paper form containing a 10-point vertical linear scale in the shape of a thermometer and a list of approximately 50 problems (practical, family, emotional, spiritual, physical) with yes/no check boxes. The cutoff score for intervention by a healthcare provider is ≥4. A recent report found the DT to have 100% sensitivity, but it had poor specificity (60%).25 Since low specificity could create unnecessary workload, the authors recommended combining the DT instrument with a question, “Is this something with which you would like help?” to maximize utility.

More than two-thirds of the cases of severe distress are manifest as an adjustment disorder, characterized by clinically significant emotional or behavioral symptoms or social impairment in excess of what might be expected for the stressor.21 Nonpharmacologic approaches to reduce the overall level of distress and to target specific symptoms that impair functioning can have good results. Supportive psychotherapy and behavioral methods such as progressive muscle relaxation, breathing exercises, meditation, biofeedback, systematic desensitization, distraction, and guided imagery can be helpful.

Reported depression prevalence in cancer patients ranges from 10% to 58%.25 When unaddressed, depression can compromise adherence to cancer treatment, reduce quality of life, and amplify desires for hastened death. Many of the neurovegetative symptoms of depression mimic cancer symptoms (anorexia, fatigue, sleep disturbances, poor concentration); therefore, assessment should focus on lack of interest in normal activities and feelings such as hopelessness, worth - lessness, doom, and guilt. Several types of psychotherapy techniques are effective and are usually combined with pharmacologic intervention, which typically consists of a selective serotonin reuptake inhibitor. Some of these agents have important drug-drug interactions with oncology and nononcology medications. Ensuring adequate interprofessional communication about medication changes during the period of active cancer diagnosis and treatment can be difficult, and often the patient is left confused and potentially at risk of harm.

Partners and family members of an individual diagnosed with cancer provide crucial support, but they also are at risk for serious psychosocial difficulties.6 Approximately 10% of caregivers of newly diagnosed patients and 33% of terminally ill patients show psychiatric morbidity. Caregivers who are female, lack a support network of their own, have a relationship difficulty with the patient, or have a history of psychiatric disorder are most likely to struggle with the caregiver role. In almost half of the cases where this occurs, the episode lasts more than 6 months, possibly due to disregard for their own problems, failure to reveal their own worries, and reluctance to seek help. With young patients, siblings may struggle with feelings of concern for the sick sibling that are in conflict with their own feelings of unimportance, lowered self-esteem, and fear for their own health.27 Strategies to assist young relatives of cancer patients in coping include24:

  • Providing generous attention and affection on a daily basis
  • Keeping their schedule and activities as normal as possible, relying on friends and relatives if necessary
  • Answering questions with gentle but honest explanations
  • Informing teachers of the situation
  • Encouraging visits, calls, or sending letters or artwork to the patient as appropriate

Managing Financial Challenges
Direct medical costs are those that are associated with services patients receive, including hospitalizations, surgery, physician visits, radiation therapy, chemotherapy, and other medications that are typically measured by insurance payments and patient out-of-pocket copayments and deductibles.28 Currently in the United States, the prevalence costs associated with cancer (direct medical costs for all living cancer patients) is estimated to be $124.5 billion annually. If the incidence, survival, and costs of care remain at constant levels, this is estimated to be $157.8 billion by 2020, whereas if recent trends of declining incidence, improving survival, and increasing costs continue, the total could exceed $172 billion.

Costs associated with cancer are highest in the initial period following diagnosis and, among patients who die of their disease, at the end of life. Costs are lowest in the period in between, following a U-shaped curve. The width and height of this curve vary by cancer site, stage at diagnosis, and age. A recent study of monthly costs in the elderly analyzed each phase of the U-shaped curve and found, for example, that female breast cancer cost $1923/month in the initial phase, $184/month in the continuing phase, and $5238/month in the last year of life, while female lung cancer cost $5074/month in the initial phase, $678 in the continuing phase, and $7710/month in the last year of life.29

Studies of costs for the individual patient with cancer are surprisingly few. Low-income elderly persons have been reported to spend as much as 27% of their income on out-of-pocket medical expenses (OPE).30 Another study found that 69% of cancer patients incurred costs related to pain management, spending an average of just under $10,000 annually per patient.31 A study of 127 patients at an academic medical center (predominantly insured Caucasian females with nonmetastatic breast cancer) analyzed OPE.32 Overall, their OPE averaged $1266 per month, and 45% perceived this as a significant or catastrophic burden. The largest proportion was related to prescription medication (41%). To cope with OPE, 52% spent less on food and clothing, 76% spent less on leisure activities, 47% used part of their savings, 30% did not refill prescriptions, 20% took less medication than prescribed, and 49% borrowed money to pay for prescriptions.

Recently, an analysis of pooled data collected from 2001 to 2008 by the Medical Expenditure Panel Survey (MEPS)—Household Component, sponsored by the Agency for Healthcare Research and Quality, was published.33 Unlike claims data, the MEPS data include all payers and components of expenditures. The proportion of patients with cancer who have a high total healthcare OPE burden (defined as spending >20% of income on healthcare and health premiums) is 13.4%, which is statistically significantly higher than the 9.7% of those with other chronic conditions, and the 4.4% of those without chronic conditions. Factors associated with a high burden were private nongroup insurance, aged 55 to 64 years, non-Hispanic black, never married or widowed, having 1 child or no children, unemployed status, lower income, lower education level, living in nonmetropolitan statistical areas, and having other chronic conditions. Beginning in 2011, the annual MEPS study will include a cancer supplement to collect more detailed data about personal expenditures for cancer.

There are some options available to patients experiencing financial stress. Some creditors, such as utilities or mortgage companies, are willing to work out alternative arrangements if consulted prior to payments being missed. Many insurance companies will assign a case manager who can help clarify benefits and suggest ways to obtain other services. Open communication between the patient, physician, and pharmacist can facilitate use of effective but less costly treatments. Social workers are available at many treatment centers to suggest programs that might be useful, including those from governmental and private agencies. Patient assistance programs (PAPs) for medication are sponsored by pharmaceutical companies. PAPs provide certain prescription drugs at low or no cost to patients who lack prescription drug coverage. There are differing views on the value of PAPs, with some feeling they are an important resource, while others are concerned that they consume personnel resources, have limited reach, and could deflect attention from more comprehensive policy solutions. A systematic review of the scientific and “gray” literature concluded that most analyses of PAPs were inadequately designed, some institutions realized cost savings on cancer drugs, and that more rigorous research is needed to establish the clinical and cost-effectiveness of PAPs from a patient perspective.34 There are numerous Web sites offering alternatives for medication. Users should be cautious when evaluating such sites and look for endorsement or authorship by well-known cancer centers, large nonprofit organizations, or government agencies. Particularly worrisome features include lack of contact information or links to unreliable or commercial sites. Examples of useful sites are the NCI’s searchable database of financial assistance resources (https://cissecure. nci.nih.gov/factsheet/FactSheetSearch8_3.aspx) and www.needymeds.org, which is produced by a 501(c)3 nonprofit organization, although banner advertisements at the site could mislead some consumers.

Other than direct medical costs, cancer is associated with the loss of economic resources and opportunities for patients, families, employers, and society. An analysis of 22 countries highly ranked in terms of standard of living and human development revealed that the United States is the only country that does not have provisions for paid sick leave for a worker undergoing a 50-day cancer treatment. In most countries, governmental social insurance programs rather than employer mandates cover most of the cost. In the United States, 5 states and 3 cities (New Jersey, California, Hawaii, New York, Rhode Island, Milwaukee, San Francisco, and Washington, DC) have requirements for temporary disability benefits, typically paid for by employee payroll deduction or employer-purchased insurance.35 For a 50-day cancer treatment, the number of days of paid leave ranges from 3 to 31.

The SUPPORT study of people with 1 or more of 9 life-shortening illnesses, including cancer, found that 55% of households with cancer withstood 1 or more “major financial blows” because of the illness, and in 12% a household member became ill or unable to function normally because of the resulting stress.36 These results are especially striking considering that 96% of participants had health insurance. The blow was disproportionate to households in which the patient was of wage-earning age: 43% of families of patients aged <45 years reported that their family savings were lost. Caregivers’ work productivity is also decreased by an average of about 20%, with higher cancer stage, married status, disrupted schedule, and greater psychological problems being the greatest predictors of decline.37 Medical costs contribute to about half of all bankruptcy cases, and among these, three-quarters of the families had insurance at the onset of illness. Scholars have described an “illness-poverty” trap in which illness causes poverty and poverty causes illness in a cycle that cannot easily be broken for generations. Lost education may have a particularly important role in a multigenerational illness-poverty trap. Children in disease- affected families are less likely to remain in school. Cancer may tip households into poverty that is multigenerational, predisposing succeeding generations to poor child development, poor education, and increased illness burden. An emerging concept to address this problem is that of inbuilt economic resilience.38

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Figure 1. Length of Survival for All Cancer Survivors, 2007
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This concept includes interventions by the medical profession that serve to ameliorate the illness-poverty cycle, such as:

  • Aiming to minimize the economic impact of illness on the household, whether due to the costs of care or the lost income experienced by the patient and family
  • Building on existing clinical and support services
  • Targeting appropriate patients and caregivers to keep the programs free of people not suffering from illness

Proceeding Into Survivorship
As described previously, increasing numbers of individuals are living for long periods of time with a diagnosis of cancer. Figure 1 shows a breakdown of survival time for all individuals with cancer.

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Figure 2. The New Paradigm of “Seasons of Survival
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For the past 25 years, the phases of cancer survivorship have been described as 3 “Seasons of Survival”: acute (the period of diagnosis and initial therapy), extended (a time of waiting, uncertainty, and transition), and permanent survivorship (a time of increasing confidence that the chance for recurrence is low and for long-term survival is great).40 However, newer treatment modalities have created an appreciation that other phases exist.41 Many of these treatments have been found to prolong disease-free survival (DFS) or progression-free survival (PFS) without substantially changing the overall survival rate. DFS is an end point used when all evidence of cancer is absent, the patient is said to be in remission, yet depending on diseaserelated factors, the cancer will return in a sizeable percentage of patients. PFS is relevant when treatments may shrink or slow tumor growth, creating a prolonged period during which the observed cancer is seemingly inactive, prior to eventual growth and a terminal phase. Each of these situations has different physical, psychological, and financial implications that are also distinct from those of the patient who is realistically hopeful for a very long period of survival (cure). Additionally, in patients whose status is such that a cure may be the goal, a new cancer may occur (typically related to genetic or environmental factors associated with the first cancer) or long-term complications of therapy may arise (including a secondary malignancy). These phases are depicted in Figure 2.

The issues surrounding successful treatment are a “good” problem to have, but there is growing recognition that traditional practice models may not be adequate to address them. A survey of 3798 posttreatment cancer survivors uncovered that 79% continue to worry that the cancer will come back, and approximately half have not had the energy to do what they want to do, been negatively impacted at their job, been blue or depressed, and/or had trouble remembering things.42 Surgeons and medical oncologists are traditionally not well trained in these types of concerns in long-term patient follow-up. To these practitioners, who often perform intensive therapies in very sick patients in a high-stress setting, the issues of survivorship may seem insignificant.43 An Institute of Medicine report from 2005 recommends survivorship be recognized as a distinct part of cancer care.44 First of all, upon completion of treatment, patients should receive a comprehensive care summary and follow-up plan from the physician who provided the treatment. Follow-up plans should be detailed and address:

  • Recurrence of original cancer
  • Development of a new cancer
  • Chronic effects of cancer
  • Prevention and monitoring for late effects of treatment
  • Emotional support
  • Financial support, including return to employment

Various studies have found that 50% to 85% of patients are successful in returning to work and that they receive little advice about the process.45,46 Barriers include prolonged physical or mental fatigue, cognitive limitations, difficulty mobilizing support, difficulty managing stress and anxiety, difficulty coping with a new self-image, and changed attitude toward work. When patients perceive that employers have accommodated their illness and that they are not discrimi-nated against when they return, success is more likely. One study of a heterogeneous group of cancer survivors who were working 4 years after diagnosis found that 13% decided to leave work because of “cancer-related reasons.”47 Awareness about employment is a necessary part of ongoing cancer follow-up.

Summary
An increasing number of individuals are being diagnosed with cancer. Treatments are becoming more complex, effective, and costly. It is critical that healthcare providers address not only the patients’ physical needs, but also their informational, psychological, social, and financial needs. A number of useful tools are available for this purpose. By taking action and creating a partnership with patients to consider all of their needs, the likelihood for a positive outcome in all realms will be maximized.

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