Psychosocial Distress Screening via Easy-to-Use Technology Started at Lurie Cancer Center

November 2011 Vol 2, No 6

A pilot study conducted at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, demonstrated that psychosocial distress screening can be made patient friendly while measuring levels of distress that warrant follow-up.

Psychosocial distress has received increasing attention from organizations such as the Institute of Medicine, which described the importance of distress screening and noted that psychosocial health really is a critical component to quality cancer care, said Nan Rothrock, PhD, Department of Medical Social Services at Northwestern.

According to the National Comprehensive Cancer Network (NCCN), 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. The NCCN recommends that distress be recognized, monitored, documented, and treated promptly at all stages of the disease and in all settings.



The 2012 Cancer Program Standards from the American College of Surgeons Commission on Cancer (CoC) states that for accreditation for a comprehensive cancer center, the cancer committee needs to develop and implement a process to monitor psychosocial distress and refer based on a patient’s report of psychosocial distress.

The CoC requires that screening must occur at a minimum of once per “pivotal medical visit.” “That could be at diagnosis, transitions in treatment, perhaps from first-line to a second-line chemo, perhaps from radiation to chemo, or transitions off treatment, or transition from curative treatment to palliative care,” said Rothrock.

The second requirement was that the program determines the mode of assessment. “The program can determine what’s feasible and what would integrate with existing work practices at their site,” she said.

The CoC also stated a preference for standardized, validated tools with established cut points.

Once screened, the CoC says that moderate or severe distress warrants follow-up. The clinician should “identify and examine the psychological, behavioral, and social problems of patients that interfere with their ability to participate fully in their healthcare and manage their illness and its consequences.”

“After having a screening measure identify distress, follow up to find out what’s the source of that distress,” said Rothrock. “Is this person having trouble with child care, with financial issues, with profound depressive symptoms, sleep problems?” The potential barriers to meeting these requirements are 3-fold, said Rothrock:

  • How should distress be measured?
  • How does one determine the level of distress that warrants follow-up?
  • How does one get the information to someone who can do something about it?

Many distress measures exist, such as the Distress Thermometer, Hospital Anxiety and Depression Scale (HADS), and the Patient Health Questionnaire (PHQ)-9. The single-item Distress Thermometer is quick and easy but not always sufficient because it lacks sensitivity and specificity, she said.
The ideal tool is one that is brief and precise and covers relevant issues in cancer. A computer adaptive test (CAT) is an example of a tool that is both brief and comprehensive, she said.

A CAT is a collection of questions about a construct using the principle that a range exists within a continuum of each construct. For example, a physical functioning item bank can range from being bedbound to being able to run 5 miles. The CAT estimates a score based on the patient’s answer to the first question, and based on that score, it will select the next best item.

A patient who answers that she has difficulty walking from one room to another might next be asked if she is able to stand without losing her balance. The CAT ignores questions higher on the physical functioning construct, such as being able to run 5 miles. The score is recalculated after each answer.



The Patient-Reported Outcome Measurement Information System (PROMIS) is a publicly available Web-based resource that can be used to measure key health symptoms and cancer-relevant domains (ie, pain, depression, physical function, perceived cognitive function). It is funded by the National Institutes of Health.

PROMIS measures can be used in a variety of ways, said Rothrock. “It has invested in software so that you can administer CATs to patients,” she said. “CATs are a really great idea, but if there’s no way to get a CAT in front of a patient easily it will never be used.”

PROMIS also has cut points established by a panel of clinical experts, with limits that define normal, mild, moderate, and severe symptomatology.



Integrating the information into the electronic health record (EHR) was important “to get the information to the right people,” she said, as the EHR is part of the existing workflow.

“Smart” messaging – getting the message to the appropriate clinician (ie, social worker vs oncologist) – was another key component.

Distress screening at the Lurie Cancer Center uses a workflow in which patients access the patient portal, called “Epic MyChart.” Once in the chart, patients are seamlessly navigated to the Assessment Center.

“In the Assessment Center, we have created a survey of PROMIS measures. That information is automatically scored and then pushed back into Epic. And the information is located under the ‘Other Orders’ section of Epic,” she said. The appropriate clinician then receives an in-basket message with the results; a score in the “severe” category or a patient who identifies a need warrants a message.

The assessment measures chosen at Lurie are PROMIS CATs, such as depression, anxiety, fatigue, pain interference, physical function, social work needs, informational needs, and nutritional status.

Patients who come to the clinic are given an iPad in the waiting room. The patient completes the assessment on the touch screen. A screening triage algorithm indicates the appropriate clinician for a message. “If a patient has a severe score in pain, fatigue, or physical function, his MDR and his clinical team gets an inbox message indicating a severe score,” said Rothrock.

“If that patient has a severe score in anxiety or depression, his MDR and care team is still messaged, but we also send a message to our psychosocial service asking it to initiate a consult. And then for those practical questions about needing more information about a given topic, we send those to a social worker or the nutritionist, again asking to initiate the consult.”



A pilot test was conducted to gauge the usability and administration of the assessment via an iPad.

The first pilot tested the usability of an iPad in 12 gynecologic oncology patients. The assessment consisted of 40 questions that took about 10 minutes to complete. All 12 patients said that they would complete the assessment at every visit. Twenty percent required some form of assistance, most often technology assistance with the iPad or Internet connectivity.

The second pilot was a measurement of realtime workflow in the clinic. Eleven patients took part. It took a mean of 1.6 minutes for the registration staff to distribute the iPad and check the patient in. The average time to complete the assessment was 10.7 minutes. Sixty-four percent were able to complete it in the waiting room; 27% finished it in the examination room. Eighteen percent required technology assistance (Internet connectivity).

The patients indicated that the iPad was easy to use, and none thought the questions to be inappropriate. Patients found the questions easy to understand and mostly agreed that the survey asked questions about aspects of health and well being that were important to the patient. Patients also agreed that the questions were meaningful and that the results were important for the medical team to know, although they weren’t certain that it would result in better medical care. None of the patients thought the survey took too long to complete.

When asked if they would prefer to complete the surveys at home or in the clinic, 5 patients indicated no preference, 4 chose the home, and 1 chose the clinic.



“We learned that integration of software systems takes longer than you think it should,” said Rothrock. “Part of the reason was that we had to get different groups – clinicians, patients, operations staff, and software teams – to all meet at the same time to agree what a shared goal would be. All of those groups have competing demands on their time.”

“The second issue was that all of these groups have their own language and their own culture,” she said. “I don’t think I understood anything that the software folks said for the first couple of meetings. We had to spend some time getting rid of acronyms and trying to talk in layperson’s terms, while still representing the complexity of everyone’s field.”

The other take-home lesson is that patients are not as scared of technology as some may think, she said. With that said, an easy-to-use design and a simple interface are crucial.

“Our next step is to implement this kind of screening for all new patients who are receiving treatment,” she said. “We need to set up a schedule for follow-up assessments so we can monitor distress over time.”

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Last modified: November 15, 2022

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