Meeting the Challenges of Providing Long-Term Psychosocial Care for Cancer Survivors


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Focusing on the first year after a cancer diagnosis is necessary, but not sufficient, for delivering care to cancer survivors, according to Deborah Mayer, PhD, RN, Director of Cancer Survivorship at the UNC Lineberger Comprehensive Cancer Center at the University of North Carolina at Chapel Hill. In a keynote address at the 2018 American Psychosocial Oncology Society (APOS) meeting in Tucson, Dr. Mayer emphasized the time to address survivorship is now, rather than later.1 She pointed out that the number of cancer survivors in 2040 is expected to clock in at 26 million.


We focus a lot of what we do on that first year of diagnosis, but the [need] for care doesn’t end at that first year.
— Deborah Mayer, PhD, RN

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“We’ve had increasing numbers of survivors; that’s the success story,” Dr. Mayer told APOS attendees. “But you also know that comes along with increasing psychosocial oncology needs. We focus a lot of what we do on that first year of diagnosis, but the [need] for care doesn’t end at that first year, and we’re not really thinking about the long-term aspects of [cancer care].”

Dr. Mayer touched on some issues that cancer care professionals should address, such as setting up a triage system and meeting the supply-and-demand needs in terms of survivor care. Are oncologists and other treating clinicians up to the task of managing survivorship?

“I think we are in a transition [stage],” Dr. Mayer said in an interview with The ASCO Post. “We are asking clinicians who are so busy doing what’s right in front of them to lift their heads and see what’s up ahead. That’s understandable, but I think we are beginning to see some change. Certainly, the ramifications of [survivorship] are becoming more pronounced, so people are paying more attention.”

Who the Survivors Are

To begin, cancer care specialists need to get a better handle on who the survivors are. Dr. Mayer pointed out that most survivorship research only goes out to 5 years after diagnosis, but “the number of longer-term survivors is growing. The number of total survivors we have now is going to be the number of people in the near future who are [survivors for] 5 years or longer. We are not really developing programs or services for those people.”

Of course, patients who survive longer will become older. By 2040, nearly three-fourths of all cancer survivors will be aged 65 and over, Dr. Mayer said. “So if you didn’t think you were a geriatric psychosocial oncology person, think again,” she told the APOS audience.

We need to think differently about how we identify and triage patients, so we see those with the highest needs while not ignoring those who are doing their best to cope with their disease.
— Deborah Mayer, PhD, RN

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In terms of cancer types, patients with breast, prostate, and colorectal cancers make up the largest volume of survivors,2 but they aren’t necessarily the group with the largest psychosocial needs, Dr. Mayer cautioned. Patients who survive head and neck or lung cancer may be smaller in number, but they may also have the highest needs for managing long-term effects.

Finally, cancer care specialists will have to balance the needs of newly diagnosed patients with those of follow-up patients. Given current and projected workforce shortages, “new patients are having a difficult time being seen because of the follow-up patients,” she said. “The number of follow-up patients is actually the largest group.”

Time for Triage

One way to address what Dr. Mayer called the “survivorship tsunami” is through a triage system. It’s basically a given that cancer survivors have unmet physical and psychosocial needs, she stated, adding that “it’s only about 10% who do not experience late-effect symptoms, either physical or related to quality of life.”

Dr. Mayer cited a 2016 study from the United Kingdom that assessed the trajectory of health and well-being of cancer survivors.3 The study looked at years 0 to 2 before diagnosis, 0 to 2 years post-diagnosis, and 2 to 4 years post-diagnosis; then they matched those patients with a cancer-free comparison group.

Psychosocial Care for Cancer Survivors

  • The increasing number of cancer survivors means more people will require follow-up and long-term care beyond disease recurrence.
  • Implementing a triage system to identify survivor needs and deliver care will be important to avoid overwhelming the cancer care community.
  • Primary care physicians should be included in the cancer survivorship continuum.

Of the more than 4,500 participants with data from these 3 time points, almost 10% reported a new cancer diagnosis. Those patients reported poorer self-rated health (P <  .001), quality of life (P  <  .001), and life satisfaction (P  <  .01) vs those in the comparison group. Also, cancer survivors had higher reported depressive symptoms (P  <  .001), impairments in mobility (P  <  .001), and activities of daily living (P  <  .001). But the extent to which patients will experience these declines can vary, and cancer care specialists need to differentiate between low- and high-need survivors.

“About 70% have some kind of problem but learn to manage it, whether it’s mild peripheral neuropathy or a bit of increased anxiety before the next mammogram,” Dr. Mayer said. “We need to think differently about how we identify and triage patients, so we are freed up to see those with the highest needs while not ignoring those who are doing their best to cope with the magnitude of their disease.”

Then there are the patients for whom life looks very different after cancer, and they are more likely to have the highest survivorship care needs, she said. “How do we deliver care that’s not always one on one, face to face? One way for health-care professionals to approach those long-term aspects is through a triage system.”

The [primary care physicians] I’ve spoken to have said that survivorship is in their wheelhouse and they want to take it on.
— Deborah Mayer, PhD, RN

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A 2017 German trial demonstrated the effects of “stepped psycho-oncologic care” by randomly allocating wards to the former or to standard care.4 The stepped care consisted of distress screening, consultation between doctor and patient about the patient’s need for consultant-liaison services, and provision of those services.

The researchers found there was no difference in well-being at 6 months in patients who received stepped care vs standard care, but the stepped-care patients with psychiatric comorbidity did visit psychotherapists and/or psychiatrists more often, indicating that stepped care may result in better referral services, including patient uptake of those services.

In a 2015, Dr. Mayer and colleagues outlined how survivorship guidelines and quality metrics can be used to get patients the right kind, and level, of supportive care.5 ASCO, in particular, has developed a section on cancer survivorship in its Quality Oncology Practice Initiative, a tool that was developed to measure quality cancer care and assess adherence to guidelines across academic and community practices.

She also directed APOS attendees to the “landmark” report from the Institute of Medicine (now the National Academy of Sciences): “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.”6 According to Dr. Mayer, “The bottom line of this report is we need to think of the patient and family; we need to identify the problems and then address them.” She continued: “We’ve made some progress in identifying the problems. I’m not sure we’ve made adequate progress in addressing them.”

Finally, Dr. Mayer pointed to a risk-stratified models of care system that is in place through the National Health Service (NHS) in the United Kingdom.7 The extensive guidelines offer ways to triage patients to either self-management, follow-up care delivered by health-care professionals, or even end-of-life care and suggests ways that care can be delivered, whether remotely or through re-accessing the health-care system.

Patients, Not Personnel

Dr. Mayer stressed two points when it comes to building a survivorship care team. First, the cancer community needs to look closer at the number of patients—both new and follow-up—it will need to provide services rather than focusing on the number of providers it needs to bring on board. “We have to make sure we have the right team on board; not just the right number of oncologists to see patients,” she explained. That means taking into consideration how many social workers and psycho-oncology professionals need to be hired, how many pharmacologists need to be employed to manage the myriad of oral anticancer agents, and even taking stock of the physical space that will be needed to see patients, she said.

Second is the need for cancer care specialists to bring primary care physicians into the survivorship care continuum. Despite current and projected workforce shortages in primary care, most are willing and able to take on survivorship issues, even if it makes up a small part of their practice (vs chronic disease management, such as diabetes, cardiovascular disease), according to Dr. Mayer. 

“The [primary care physicians] I’ve spoken to have said that survivorship is in their wheelhouse and they want to take it on,” she told The ASCO Post. “But they don’t necessarily have the knowledge, so they are being open to being told what’s needed.... The value of the primary care physician is that the patient has a long-term relationship with [him or her], and the patient may be more willing to talk to [him or her] about decision-making rather than talking with the oncologist. That’s why primary care physicians should be included in coordinated care.” ■

DISCLOSURE: Dr. Mayer owns stock in Carevive.

REFERENCES

1. Mayer DK: The survivorship tsunami: How will we be able to deliver psychosocial care to those in need? 2018 American Psychosocial Oncology Society Annual Meeting. Presented February 24, 2018.

2. DeSantis CE, Lin CC, Mariotto AB, et al: Cancer treatment and survivorship statistics, 2014. CA Cancer J Clin 64:252-271, 2014.

3. Williams K, Jackson SE, Beeken RJ, et al: The impact of a cancer diagnosis on health and well-being: A prospective, population-based study. Psychooncology 25:626-632, 2016.

4. Singer S, Danker H, Roick J, et al: Effects of stepped psychooncological care on referral to psychosocial services and emotional well-being in cancer patients: A cluster-randomized phase III trial. Psychooncology 26:1675-1683, 2017. 

5. Mayer DK, Shapiro CL, Jacobson P, et al: Assuring quality cancer survivorship care: We’ve only just begun. Am Soc Clin Oncol Educ Book e583-e591, 2015.

6. Adler NE, Page AEK: Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington DC: National Academies Press, 2008. 

7. National Health Service: Innovation to implementation: Stratified pathways of care for people living with or beyond cancer: A ‘how to guide.’ Available at https://www.england.nhs.uk/wp-content/uploads/2016/04/stratified-pathways-update.pdf. Accessed April 2, 2018.


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