'Cancer Is Almost Always a Crisis'

Liam Davenport

July 05, 2018

It is not uncommon for cancer patients to experience severe psychosocial distress, either at the time of diagnosis, during treatment, or toward the end of life, but what is less well known is that that can affect treatment decisions and reduce adherence to treatment.

That's because cancer "is a disruption of the natural order of things, of our delusions of living forever and avoiding the reality that we're going to lose everything we love and care about," said Matthew J. Loscalzo, MSW, Liliane Elkins Professor of Supportive Care Programs, City of Hope Comprehensive Cancer Center, Duarte, California.

"We know that illness is always a stressor," he added, "and cancer is almost always a crisis.

"It's a crisis in the area of physical vulnerability," he continued. "Am I okay? Am I safe? Can I control what's happening? Can I predict what is going to happen?"

Loscalzo was speaking at a session dedicated to the topic at the at the recent American Society of Clinical Oncology (ASCO) 2018 annual meeting

Another speaker at the same session, Sophia Kustas Smith, PhD, MSW, Duke University School of Nursing, Durham, North Carolina, said that this crisis is only made worse by the many effects cancer treatment has on patients, such as effects from surgy, chemotherapy, radiotherapy, and hormonal therapy, as well as non-treatment-specific effects.

All this makes cancer patients particularly susceptible to psychosocial distress. But what exactly is psychosocial distress?

Opening the session, Donald Lee Rosenstein, MD, MPH, a psychiatrist at the Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, quoted the National Comprehensive Cancer Network (NCCN) definition from the organization's distress management guidelines.

These guidelines state that distress "is a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral emotional), social and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment."

He emphasized that psychosocial distress is not a single construct.

"I know what depression is, I know what anxiety is, I know what a panic attack is," he said. "These are constructs that have been very well studied and very well defined, and there are specific interventions for them.

"But distress can be one of several constructs that can be either discrete or amorphous" and could be a function of several different factors, he said.

"It's also important to remember that psychosocial distress is not the same in all patients, and nor is it the same in any particular patient over time," Rosenstein noted, adding that "it's not always a cause for intervention."

Cancer Patients Are Particularly Vulnerable

Individuals diagnosed with cancer are particularly vulnerable to psychosocial distress, he continued.

Depending on the population studied, rates of psychosocial distress among cancer patients can be as high as 40%, although that varies with the type and stage of disease.

Approached for comment, Joseph A. Greer, PhD, program director of the Center for Psychiatric Oncology and Behavioral Sciences, Massachusetts General Hospital Cancer Center, Boston, who was not at the session, noted that the prevalence of distress also depends on how it is measured.

"We see with self-report symptom scales that roughly 30% to 40% of patients report heightened distress," he told Medscape Medical News.

"If we use more rigorous methods of assessment, such as, say, diagnostic interviews for psychiatric disorders, the rates are lower, closer to 15% to 25%," he said.

Greer pointed out that individuals with a history of psychiatric problems, such as depression or anxiety, are at higher risk for psychosocial distress, because the stressful experience of a cancer diagnosis may exacerbate their preexisting condition.

"People who have few social supports or few resources are also more likely to have distress," he said.

Which Aspects of Cancer Cause Most Distress?

In addition, some individuals may experience traumatic responses to the cancer diagnosis itself, depending on the type of cancer, the nature of the diagnosis, and the intensity of treatment.

Loscalzo and colleagues at the City of Hope conducted a study to examine which aspects of the cancer experience cause the most distress in patients. The study involved more than 42,000 screenings completed by more than 24,000 patients.

The results showed that the most common sources of distress among those with the highest levels of distress were finances, sleeping, worry about the future, fatigue, the adverse effects of treatment, and pain, all which were seen in a third to two fifths of patients.

Other sources of distress included being anxious or fearful, feeling as if there are still important things left to do, feeling "down" or depressed, and walking or climbing stairs.

A more recent study found that 13% of patients reported severe to very severe sleep problems, even prior to starting cancer therapy.

Yet another study revealed differences in distress among the sexes. Men aged 18 to 39 years were more likely to experience high distress and to request a talk with a member of the team in comparison with older men, but this age difference was not seen in women.

Older cancer patients are also more likely to be preoccupied by walking, climbing stairs, joint limitations, transportation, solving problems, and fears over end of life than their younger counterparts, the study found.

Finances also play a part. A study found that patients with low incomes had higher distress on physical, practical, functional, emotional and overall domains than those with higher incomes.

Consequences of Psychosocial Distress

All of this can have an impact on a range of quality-of-life domains. Patients can experience strain in relationships, as well as a sense of isolation, often due to no longer being able to work full time.

Duke's Smith said that there can also be an impact on spiritual well-being.

"While there may be some clear advantages to having gone through cancer and survived it, in the sense of inner strength and appreciation for life, with some of our survivors, they may begin to question really what the meaning behind their experience was," she said.

"Fear of recurrence is huge, especially for survivors that receive curative treatment for their disease," she added.

The consequence is that psychosocial distress can affect decision making and even adherence to treatment.

"You can see it go one of two ways," commented Greer. "For some individuals, they may engage in avoidance behaviors, because the idea of going through the cancer treatment can be very scary for them.

"In these moments, one instinct is to avoid engaging in treatment, such as having infusion chemotherapy, because the patient maybe had phobias of the procedures themselves."

On the other hand, a patient may seek additional care to reassure themselves. They may desire to undergo scanning more frequently than would normally occur, because they are anxious about the cancer progressing.

Heightened distress can also have an impact on choices regarding end-of-life care.

Greer and colleagues conducted a study of patients with advanced lung cancer and found that those who had high anxiety and symptoms of depression close to diagnosis displayed a particular pattern.

He said that during the 6 months following diagnosis, "they were more likely to have some chemotherapy dose delays, so somewhat suboptimal administrations of chemotherapy, but at the very end of life, they were more likely to have more aggressive care."

This meant an increase in the use of chemotherapy closer to the end of life and a lowering of rates of hospice usage.

Screening for Psychosocial Distress

With such a large proportion of cancer patients experiencing psychosocial distress, Rosenstein believes that there is a clear case for screening to identify patients in need of psychosocial services, with "the ultimate goal" being to improve outcomes.

Specifically, Greer said distress should be targeted and treated "so that patients can optimally adhere to their prescribed regimens for cancer care, first and foremost."

Another aim of screening for and treating distress is so that patients "can have a good, informed illness understanding and an accurate sense of where their treatment is going, so that they can engage in appropriate decision making around care with their oncology team," Greer said.

This could help them, for example, to maximize their quality of life as they move toward the end of life

, "so, say, engaging in hospice services in a more timely way," Greer explained. He added: "But if patients are very distressed and don't want to discuss plans for care at the end of life, such as hospice, they may never access such services, which could have been very beneficial to them."

Unfortunately, screening for distress is not yet universally practiced, and consequently, standard clinical care, Rosenstein said, "results in missing a lot of distress that people have."

Loscalzo said barriers to screening include a perceived lack of time, overwhelming workloads, a lack of staff to process information, a desire to avoid "messy emotional concerns," a lack of skills in managing psychosocial concerns, an overreliance on the latest technologies, and a perceived lack of access to services and resources, among others.

To help tackle the issue, organizations such as the American College of Surgeons have included distress screening as part of their accreditation standards for comprehensive cancer care.

"But the recommendations for that are vague in some ways," Greer said. "They don't exactly show how you're supposed to implement it or what tools you're supposed to use."

There are validated tools to help clinicians in assessing psychosocial distress. One of the most frequently used is the NCCN Distress Thermometer and Problem List for Patients, the effectiveness of which has been assessed in several populations.

Greer explained that this is a self-report instrument that asks patients to rate their distress on a 0–10 scale. The assessment pertains to a range of potential sources of distress in an individual's life, including practical, physical, family, and emotional problems, as well as spiritual/religious concerns.

Other tools that oncologists use include validated self-report instruments that look specifically at symptoms of anxiety or depression. Such instruments provide "a very common way of understanding psychosocial distress," Greer noted.

Regardless of the instrument used, Greer is pleased to see the field "moving from no distress screening whatsoever to assessing patients with clinically appropriate and validated instruments.... At least we're moving in the right direction."

For screening to be effective, Loscalzo said that it must be oriented to the cancer experience, so that it teaches oncologists what matters most to patients at that time point and helps motivate and regulate emotions via meaningful actions linked to tailored resources, as well as triages to other professionals, when appropriate.

"This is not simply distress screening," he said, "this is empowerment, this is engagement, this is compassion, this is courage. And if you do screening right, that's what happens."

Not Just a One-Time Assessment

When should patients be screened for psychosocial distress? At their diagnosis, or later on, after they have started treatment?

Greer explained that a patient's distress "will vary throughout the trajectory of cancer care.

"As you might imagine, in the beginning, when a person is first getting diagnosed and learning about the treatment, that's a period of considerable distress," he said.

"It tends to stabilize a bit after that as a person engages in treatment and has a clear plan, and then it will peak again, often around scan times.

"So, for example, patients often experience distress when they have follow-up scans either to assess whether the cancer has returned, if they were treated for cure, or to determine if the cancer has progressed for those who have incurable disease."

Another time of distress that Greer highlighted is when patients transition off treatments, switch between them, or move into a survivorship surveillance phase, during which they have less contact with the cancer care team.

"Those are all periods that we noticed when a person has heightened distress," Greer said.

"Then certainly for those who have been diagnosed with an incurable cancer, as they approach the end of life, when the cancer is progressing as treatments are no longer working," he continued. "That's another time when distress is much higher for both the patient and the family."

Institutions typically differ with respect to the frequency of screening. For example, some measure it once, after care has proceeded for 1 month, whereas other institutions administer tools at multiple time points and assess how the scores evolve over time.

For Rosenstein, there are "three obvious pivotal moments" for screening. One, he said, is at the time of diagnosis, although he is "not convinced" that it is the right time to screen for distress.

Another "critical moment," he said, is the transition between active treatment and survivorship, "and then obviously at the time of disease progression or if there's a shift into hospice care.

"But I think that it's worth thinking about screening at any moment where there's a significant change in the lighting in the room as a pivotal time to think about distress," he commented.

Psychosocial Distress in Practice

For one of the presentations at the ASCO meeting, Carole Mayer, PhD, director of research and regional clinical lead at the Northeast Cancer Center, Health Sciences North, Sudbury, Ontario, Canada, discussed an initiative that was launched in 2009 in 14 different jurisdictions in Canada.

Labeling psychosocial distress as the "sixth vital sign," they used the Edmonton Symptom Assessment System Revised Scale (ESAS-r) and the Canadian Problem Checklist (CPC) as the first part of a six-step plan that also included the following:

  • Acknowledging the results with the patient

  • Prioritizing what is important to them

  • Having the resources available to help clinicians

  • Communicating with clinicians about, among other things, referral pathways

  • Providing patient information

  • Encouraging ongoing assessment

In a study of the implementation and sustaining phases of the intiative, which included more than 3000 patients, the investigators found that tiredness, well-being, pain, and dyspnea were the greatest contributors to distress on the ESAS-r.

On the CPC, worries over family/friends and physical problems, such as problems associated with concentration/memory, sleep, and weight, were revealed.

From a total of 1103 patients who were offered a referral to another healthcare professional to help them with their distress, 123 patients were referred to support services.

The Massachusetts General Hospital (MGH) Cancer Center is also developing a program for psychosocial distress screening, Greer said, with a pilot being conducted this year.

It is based on the Patient Health Questionnaire–4, a validated self-report screen for depression and anxiety, and includes additional items that assess sources of distress for patients, such as alcohol and substance use, financial considerations, difficulties with travel, and relationship concerns.

The program is being conducted in conjunction with the Dana Faber Cancer Institute and other affiliates within the Partners system, with integration into their Epic electronic health records system (EHR).

"We wanted to make sure that our affiliate institutions would have a voice in saying what they wanted this distress measure to look like and how it was going to be implemented into our EHR," said Greer.

"That took about a year...and now our individual institutions are piloting them in various disease clinics."

The purpose of the pilots, he said, is to see how the process unfolds. Initially, patients will be screened once, around the fourth visit after diagnosis.

"They'll feel more stable and calm a few visits in, once they have a clear treatment plan," he added. "Then we want to pick up the people who have more persistent distress to offer supportive care services."

Once the "kinks" have been worked out, the program will be expanded throughout the cancer clinics at the MGH Cancer Center, with the possibility that it could evolve over time.

Leveraging Mobile Technologies to Tackle Distress

One approach to helping cancer patients who are experiencing distress that has received a lot of attention recently is the use of mobile technologies.

Smith described a project in which she and her colleagues initially adapted a smartphone application designed for veterans with posttraumatic stress disorder (PTSD), called PTSD Coach, to make it more specific for cancer patients.

Seeing the app as a resource that could be provided to patients once they complete the Distress Thermometer, Smith said: "Mobile health apps can enhance reach and facilitate symptom self-management, and they can help to transition our cancer system into a personalized value-based care."

She explained that the inspiration came from the realization that, under their current system, patients with psychosocial distress could be missed.

"At our institution, the nurse takes the number, puts it into Epic, and then creates a referral based on what the patients selects in the problem list," Smith said. "And then we kind of cross our fingers.

"Are they really going to get to where they need to be? A lot of times, it doesn't happen. So one of our visions for the app is to integrate it right into the distress management protocols at the cancer institute," she said.

After developing the app, they conducted a usability test with 30 cancer survivors, and then piloted the app with 31 cancer patients, of whom 48% experienced a clinically significant reduction in PTSD symptoms after just 4 weeks.

They then created a new version of the app. The Distress Thermometer was included along with stress management tools, deep breathing exercises, relaxation techniques, and guided imagery.

Seeing the app as a resource that could be provided to patients once they complete the Distress Thermometer, Smith said: "Mobile health apps can enhance reach and facilitate symptom self-management, and they can help to transition our cancer system into a personalized value-based care."

Although the initial results are promising, Smith acknowledged that several challenges remain, including "resistance to chance and fear that apps could somehow impact the clinic workflow, and mobile devices are not cheap."

Greer believes that mobile apps could play a big role in the management of distress in cancer patients.

"I think that it's a powerful entry point for supportive care that's easily accessible for many patients and something that they would be willing to engage with," he said.

"For a lot of individuals, they may report distress but have no interest or desire to meet with social workers, psychologistsm, or psychiatrists, for example, if they're experiencing anxiety or depression.

"That's because they may have their own support outside of the institution and are already meeting with a therapist, or perhaps they have good support in their family and friends and they just don't feel the need for that.

"And then there are others for whom it's still a very stigmatizing experience, the notion of having to go see a mental health professional."

Apps therefore offer patients an opportunity to engage in evidence-based care on a private basis.

Greer said that the mental health field has been a leader in adapting validated interventions for Web-based and app-based interventions.

However, he pointed out that the effect sizes associated with such interventions tend to be smaller than with face-to-face interventions, at least in part because engagement tends to be lower.

Greer said that, on average, patients complete approximately 50% of Web-based treatment protocols, "and so the challenge for developers in the mental health field is to really think about how to engage patients and their loved ones in these technological advances in a way that supports their adherence throughout."

Personalized Care for Psychosocial Distress

Ultimately, Greer believes that mobile technologies will form "just one more layer of support" for patients, in a fashion similar to the support offered through personalized care to patients undergoing drug treatment.

"There are innovative models for how we structure our care services to be most responsive at a population level, because not every person needs, say, 12 to 15 sessions of cognitive-behavioral therapy to treat their distress," he said.

"There are some patients who have maybe mild to moderate distress, and working with the social workers and very brief targeted therapy can be exactly what they need...whereas others have much more complicated histories and fewer resources, or maybe much more severe mental illness, and very much need a more intensive approach, with psychology, psychiatry, social work all on board...to support the patient to get through cancer treatment," he added.

At his institution, patients are offered a range of supportive services, including a psychiatric oncology clinic staffed with psychologists and psychiatrists, as well as access to massage therapists, acupuncture, alternative music, and art therapies.

As Greer pointed out, there is a shortage of psychiatrists and psychologists "to meet the demands of every single patient who has distress, and so we need to be creative about our touch points and the level of intervention that we can offer patients.

"Not everybody needs an intensive level mental health intervention, and some people can very much benefit from lower intensity interventions, such as reading materials, mobile apps, brief consultations with social workers, or community referrals for mental heath care.

"For those who experience more persistent distress or continue to elevate, then we move them up the ladder towards more robust interventions that maybe involve psychotropic medications combined with in-person counseling at the cancer center."

Loscalzo said: "When people think about cancer, they think about death and dying in every culture. We could leave them out there floating, or we have other options.

"One of the options is this: To create an environment of healing, open, honest communication, letting them know we will work as a team, and empowering them to be the best they can be," he commented.

Dr Rosenstein has received research institutional funding from Pfizer and honoraria from UptoDate. He may in the future receive royalties from a book published in 2017 from Oxford University Press. Dr Loscalzo has received honoraria from Puma Biotechnology and SupportScreen royalties via City of Hope (nonprofit). Dr Mayer has disclosed no relevant financial relationships. Dr Smith has received research funding from Pfizer.

American Society of Clinical Oncology (ASCO) 2018. Presented June 4, 2018.


Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.