Cancer in America: Three-Part Series on the Patient Experience

It Takes a Village to Cope With Cancer

Lidia Schapira, MD


May 16, 2016

Editorial Collaboration

Medscape &

Editor's Note:
A watershed report released by CancerCare on May 11 gives an unparalleled look at the experience of cancer in the United States. The 2016 CancerCare Patient Access & Engagement Report surveyed 3000 cancer patients from all regions of the United States, who represented a cross-section of ethnicities, education levels, ages, and tumor types. The report reveals a complexity of patient experience that in many ways contradicts the medical establishment's assumptions about cancer in America.

For Medscape, Lidia Schapira, MD, associate professor at Harvard Medical School, spoke in depth to Ellen Sonet, strategy and alliance officer of CancerCare, about the results of the six-survey report and what can be learned from it. This first part of a three-part series focuses on where patients seek help and counsel after a diagnosis of cancer. Part 2 examines the disconnect between shared decision-making and the information needs of patients, and Part 3 takes a look at survivorship and the financial, psychological, and symptomatic burden that characterizes life beyond active treatment.

Dr Schapira: What led CancerCare to launch this study, and what were you hoping to find?

Ms Sonet: For 73 years, CancerCare has been helping patients manage the financial and psychosocial impact of cancer. We talk to many thousands of patients every year, but we felt that we needed information from individuals who were not our clients in order to better understand what it's like to be a patient. It was our intention to develop a nationally representative view of patients' journeys from their perspective.

After Diagnosis, the Reach for Help

Dr Schapira: We start on this cancer journey, as you aptly describe it, from the moment of diagnosis. What happens immediately after the diagnosis? Who do patients talk to or go to for support?

Ms Sonet: We were surprised at how broadly patients reach out to others. No two patients are the same, but it seems that many patients rely on a very broad group of people to help them become more informed and to manage the shock and awe of a cancer diagnosis. Not only are they speaking with their physicians and nurses, but they're also reaching out to religious leaders, social workers, other clinicians, support groups, patients, and family members.

Younger patients seem to be engaging many more people in conversations and reaching out much more broadly than older patients. Younger patients are more active in online communities and in contacting patient support organizations, and are having more conversations than those in the Medicare age range.

It was especially interesting for us to see the differences among younger patients between white respondents and African American/Hispanic respondents. The African American/Hispanic respondents were much more likely to reach out more broadly and had almost twice as many conversations per respondent as their white counterparts of the same age.

Dr Schapira: Do you have any ideas about why that is?

Ms Sonet: I think that for many ethnic minorities, the support of family and extended family is helpful in making decisions.

Certainly, for many years, some African Americans have felt disenfranchised by the traditional medical establishment. For them, it's particularly important to gather as much information and as many points of view as they can to make sure that they are getting the highest quality of care.

Dr Schapira: The issue for some Hispanic patients and others for whom English is not their first language may be the importance of having someone who can advocate, interpret, and also act as cultural broker. There may be many factors that drive patients to seek support and assistance outside of the medical establishment, don't you think?

A 'Buddy' on the Cancer Journey

Ms Sonet: Absolutely. Caregivers—and I'm using the term broadly—are so important in helping to support patients through their cancer experience. Patients may rely on close friends or clergy or social workers. The patient experience is so complex, and patient needs so numerous, that there is a role for many, many caregivers to help patients through these years of living with and beyond cancer.

Because the patient experience is so complex, and patient needs so numerous, there is a role for many, many caregivers to help patients through the years of living with and beyond cancer.

Knowing that, we were surprised and concerned to learn that more than a third of respondents to our survey did not have a caregiver with them when they first learned they had cancer, or even throughout their cancer experience, as we found in our subsequent surveys. I think not having a caregiver through this journey is very problematic.

Dr Schapira: What did you learn about ways in which patients cope in the early months after diagnosis?

Ms Sonet: Some patients want to get this monster out of them as soon as possible, and they do a deep dive into treatment right away. Others are more deliberate and may do a fair amount of information-gathering before they start treatment.

About a third of younger white respondents—"younger" meaning age 25-54—got a second opinion on their diagnosis; for African American and Hispanic respondents, it was close to half. Looking through information on the Internet was something that just about everybody did. There were differing levels at which people spoke with other patients and connected with a religious or spiritual advisor.

We were disappointed to see low levels of contact with patient support organizations, and we suspect from other survey data that this is because people weren't aware of these organizations or how to access them.

The Cast of Caregivers

Fellow Cancer Patients

Dr Schapira: What kind of support is derived from talking to other cancer patients, either informally or in support groups? How does it differ from the support they get from reading a good article on the Internet or speaking with a religious leader?

Ms Sonet: Cancer is very isolating. Even though 1 in 2 people will be diagnosed with cancer in their lifetime, the individual patient feels alone. Having kindred spirits to share their observations, their fears, and their concerns helps to alleviate some of that loneliness. You know better than I that breast cancer patients who participate in support groups have been shown to have better outcomes than patients who don't.[1]

Many patients seem to feel that there is only a discrete number of questions they can ask their physicians.

Dr Schapira: Yes; connecting with others leads to improvement in quality of life and in diminution in anxiety and other symptoms related to emotional distress. This has been shown over and over.[1,2,3]

Ms Sonet: For new cancer patients, it's hard to know what's "normal" and what to expect. Very often, patients come out of a meeting with their physicians with more questions than answers. Many patients seem to feel that there is only a discrete number of questions they can ask their physicians. I think they rely very much on the experiences and advice of other patients to help them find their way.

Patient Navigators

Dr Schapira: Your surveys asked questions about the role and usefulness of patient navigators. Could you tell us how you define patient navigator and what you found?

I would like to see healthcare systems make patient navigators available to all cancer patients.

Ms Sonet: In Harold Freeman's seminal work,[4,5] the role of patient navigators was to ensure that persons newly diagnosed got treatment by helping them overcome any financial and access barriers. I think that's largely still their role, although coordination of care has become so much more complex that navigators can be incredibly effective in helping patients wend their way through the medical system.

Navigators are more often available to patients with the more common cancers. This is unfortunate for those who have less common cancers where the treatment plans and patients' disease-specific concerns aren't as frequently encountered online, where there are fewer resources to address them. I would like to see healthcare systems make patient navigators available to all cancer patients, whether they have breast cancer or sarcoma.

Primary Care Physicians

Dr Schapira: You've identified through your research that primary care physicians have a role in the care of cancer patients. In my own practice in Massachusetts, I've found that some primary care physicians stay very much involved while others completely opt out once a patient has cancer. What did you learn from the surveys?

Almost half of our survey respondents rely on primary care physicians.

Ms Sonet: Almost half of our survey respondents rely on primary care physicians to provide them with support and clinical care while they have cancer.

With a shortage of oncologists nationwide and the aging of the population, it will be necessary for primary care providers to absorb more and more of the care of cancer patients. Following survivorship plans is absolutely critical, and we hope that the medical home concept would be more widely applied in caring for these patients.

Dr Schapira: Knowing that it takes so many professionals, skilled advocates, and numerous caregivers to support patients, could there be such a situation of too much information or too many caregivers?

It Takes a Village of Caregivers

Ms Sonet: We know from our surveys that the more input people have into their treatment plan, the more satisfied they are with their care, and the more well prepared they feel they are. I think this points to a support team that can surround the patient. That support team would be different depending on the patient's needs, personal circumstances, and maybe even their treatment. Patients really need people they trust around them, who are well versed in their clinical condition and are well poised to help them psychosocially and practically.

Dr Schapira: You spoke to the importance of trust, so that people really feel that they're not only connected but also that they trust the advice they're getting. I think that's enormously important.

Should the medical community provide more caregiver training? Should we more formally recognize the role that caregivers play, both in the emergency room and in the waiting room and at home during days of great anxiety? Do you have any thoughts about how the professional community can or should reach out to caregivers to help them prepare for these important roles?

Ms Sonet: The first recommendation I have is to make sure that caregivers understand what's expected. With 90% of cancer care being delivered in the outpatient setting, we do need to create an abundance of education and support channels for caregivers.

For me, the surveys have opened a new vista on the experience of the cancer patient. One of the points that has become clear is the wide range of caregivers that are needed to support a person who has received a cancer diagnosis. Clearly, it takes a village to help a person cope with cancer.

Ms Sonet has disclosed no relevant financial relationships.


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