Distress Screening: ‘Underestimated and Overlooked’ by Cancer Specialists

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The National Comprehensive Cancer Network® (NCCN®) Distress Thermometer and Problem List for Patients have been around since 1999,1 and in 2015, the American College of Surgeons Commission on Cancer mandated routine distress screening at cancer centers.2 

So how successful has the cancer community been at implementing and disseminating distress screening in routine cancer care in the past few years? Not very, according to Deborah K. 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) Conference in Tucson, Dr. Mayer pointed out that “psychosocial issues are often underestimated and overlooked. We don’t read the signs that are right in front of us.”3

Available Evidence

Recent research bolsters Dr. Mayer’s assessment. A 2017 study from the University of Michigan Comprehensive Cancer Center, Ann Arbor, assessed electronic health records for 55 cancer centers in the United States and Canada. Among those reports, 62% of patients received the mandated distress screening and follow-up, with the highest rates reported by community cancer programs. But among National Cancer Institute–designated cancer centers, less than half adhered to the protocol, the authors found.4

Moreover, while 84% of the centers reported using the NCCN Distress Thermometer, documentation of psychosocial screening was lacking in one of every three cases, they noted. Dr. Mayer said the lackluster uptake of distress screening prompted her to review published studies on pain management. 

Psychosocial issues are often underestimated and overlooked. We don’t read the signs that are right in front of us.
— Deborah K. Mayer, PhD, RN

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“How many of you remember when we started implementing pain as a fifth vital sign?” she asked APOS attendees. “I can’t find any literature to show that it helped us improve pain management, which is really sad because, if we are measuring for it, you’d think we might do more things with it. I don’t want distress screening to be like that.” (In 2016, the Joint Commission noted its original 2001 standard did not state that pain needed to be treated like a vital sign.5 )

The point is, Dr. Mayer stressed, the cancer community has the resources to make distress measurement and management an integral part of cancer treatment and follow-up.2,6 Supportive care providers at Saint Luke’s Cancer Institute and the Koontz Center for Advanced Breast Cancer in Kansas City, Missouri, did just that with a distress thermometer–based clinical intervention that incorporated electronic referrals and tracking of those referrals to guide patients to more timely supportive oncology and rehabilitative services.7

Distress Tracker

“Screening for psychosocial distress is now mandated, but there’s little research to suggest how we could be using these distress ratings to encourage referrals to support services,” explained Savannah Geske, PhD, of Saint Luke’s Health System, in a presentation at the APOS meeting.7 “So in 2016, we initiated our own distress thermometer and tracking system.”

Savannah Geske, PhD

Savannah Geske, PhD

Dr. Geske’s group began by designing its own distress thermometer that asked patients to rate a variety of issues—psychological, social, spiritual, nutritional—based on a scale of 1 to 10. While many of the same elements as used in the NCCN Distress Thermometer are included in the St. Luke’s version, the latter is “more stringent than the NCCN Guidelines,” Dr. Geske noted. “[At the time], the NCCN Guidelines [were] more open-ended; they [suggested] that distress be monitored at pivotal times in treatment. That’s kind of hard to define.... We wanted to have a [more] clear structure, so we decided that our patients would get a distress thermometer assessment at every clinic visit.”

Starting in 2016, every patient completed a paper version of the distress thermometer assessment at every clinic visit, regardless of whether the appointment was with the surgeon, the oncologist, the nurse practitioner, or the radiation therapy department. In 2017, the distress thermometer was incorporated into the institute’s electronic health record system. 

“When patients come to their appointments, they check in, and our front desk staff give them a paper copy of our distress thermometer,” Dr. Geske said. “Once they’ve completed the form, the medical assistant walks them back to the exam room, takes the form, and when pulling up the patient’s file [from the health record system], this distress screen evaluation autopopulates into the patient’s portal.”

The medical assistant enters the data from the paper copy into the patient’s electronic health record. Patients who score a 4 or above on the 10-point scale are then triaged by the clinic nurse and advised of psychosocial services offered through the cancer institute, such as occupational therapy, massage, pelvic floor rehabilitation, exercise, physical medicine, and speech therapy. Based on the patient’s response, referrals are then made to the appropriate psychosocial services, she explained. Patients have the option of declining the referral, requesting written information in the form of supportive care literature, or accepting the referral, she added.

Dr. Geske noted that patients who score a 3 or below are not given a referral to support services, but that does not prevent them from asking about such services. The lower score “means we don’t have to initiate a discussion with them. If they score a 4 or above, the nurse or the medical assistant must initiate the conversation.” 

Distress thermometer results, patient response to nurse assessment, and referral recommendations are noted in a flow sheet in the electronic health record system, Dr. Geske added. This allows health-care providers to track a patient’s level of distress over time and to note if and when referral services were accepted. “Even if patients continue to decline referrals, they still get a distress [thermometer] screen at every one of their clinic visits,” she pointed out.

Rise in Referrals

Dr. Geske reported that, from March 2016 to June 2017, referrals to all psychosocial services increased by about 60%. As of December 2017, 21% of all St. Luke’s patients with cancer were referred for some sort of psychosocial or supportive services.

The majority of referrals came from medical oncology, she noted, and the most recommended supportive services were social work, genetic counseling, nutrition, and psychology. Physical therapy and speech therapy did not receive as many referrals. 

“Including the [distress thermometer] as a routine assessment for clinical care of individuals with cancer is viable,” Dr. Geske’s group wrote. “Assessment that allows for immediate electronic referral for psychosocial services as an element of that ongoing assessment demonstrated a dramatic increase in access to those services.”


  • Distress screening is mandated by the American College of Surgeons Commission on Cancer but has not been vigorously deployed by most institutions and clinics.
  • A distress tracker was successfully implemented at one cancer institute, with good practitioner and patient uptake.

Dr. Geske explained, when the distress thermometer project was first initiated, there was some pushback, as nurses and medical assistants questioned taking on more paperwork. In addition, there were concerns that patients would balk at having to fill out the distress thermometer form at every visit.

Early on, “40% of individuals declined referrals. We started having a quarterly meeting with clinical personnel to share the results of distress screening, the number of referrals, and the number of individuals who were now in some supportive care treatment as a result of those referrals. In the fourth quarter of 2017, declining of referrals was down to less than 3%,” she stated. “One of our sites made 74 referrals in 3 months, and no patients refused that service.”

Further Along the Care Continuum

Patients understand that supportive services are “a good thing,” Dr. Geske added. “We want [patients] to be taken care of, not just in terms of cancer care, but also in terms of mental health, social aspects—all of those things.”

With regard to study limitations, she acknowledged they only tracked how many people accepted referrals, not how many patients went on to schedule an appointment and keep those appointments. The group is now collecting those data and will present them in the future. 

Future research will track patients further along the care continuum. Another avenue the group would like to explore is using an online system that would allow patients to fill out the distress thermometer at home, before the clinic visit. If a patient expresses high distress prior to the appointment, then perhaps support services can be on hand when they arrive, she said.

“For individuals who don’t feel comfortable accessing computers and filling out [the distress thermometer] beforehand, we’re also looking into getting [tablet computers],” Dr. Geske said. “So when they come to their appointment, they can fill out the distress screen on the [tablet], and it automatically populates their electronic medical record.” ■

DISCLOSURE: Dr. Mayer owns stock in Carevive. Dr. Geske reported no conflicts of interest.


1. NCCN Distress Thermometer and Problem List for Patients. Available at Accessed March 23, 2018.

2. Lazenby M, Ercolano E, Grant M, et al: Supporting Commission on Cancer–mandated psychosocial distress screening with implementation strategies. J Oncol Pract 11:e413-e420, 2015.

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

4. Zebrack B, Kayser K, Bybee D, et al: A practice-based evaluation of distress screening protocol adherence and medical service utilization. J Natl Compr Canc Netw 15:903-912, 2017.

5. Baker DW: Joint Commission Statement on Pain Management. April 18, 2016. Available at Accessed March 23, 2018.

6. Buxton D, Lazenby M, Daugherty A, et al: Distress screening for oncology patients: Practical steps for developing and implementing a comprehensive distress screening program. January-February 2014. Available at Accessed March 23, 2018.

7. Geske S, Johnson R: Using the distress thermometer to guide electronic referrals to psychosocial services. 2018 American Psychosocial Oncology Society Conference. Presented February 23, 2018.