Anguish, agony, extreme anxiety and hardship – these are synonyms for distress. Believe it or not, almost everyone experiences distress. It comes through various levels, and during various parts of life.
This is especially true for colorectal cancer patients.
While most cancer patients and survivors experience distress, it’s often not monitored by medical care teams. This can result in higher costs, reduced treatment adherence (don’t stick with the treatment plan) and lower quality of life.
Studies show that cancer patients experience mental health challenges that require attention. These can be caught and addressed by looking for signs of distress, or distress screening.
What is Distress Screening?
Health care teams are beginning to pay attention and implement distress screening for cancer patients.
Distress screening is a way to investigate a patient’s level of stress, anxiety, sadness, etc. at any point throughout the cancer continuum.
Those who are screened for distress may not be currently in distress or be experiencing distress in all parts of their lives; however, it’s a way to check in with this aspect of health.
Tools (surveys) used to screen patients vary across institutions, but they generally ask questions about depression, fears for the patient’s family, loss of function and emotional and social health.
A pain scale rates from 0 – 10 (with 0 reflecting no pain and 10 reflecting the maximum); distress screening uses a similar scale. It measures distress ranging from “normal adjustment” (0) to the full criteria for mental disorder (10).
Patients will receive recommendations for care to address needs based on the results of their distress screening.
Why Test for Distress?
Distress screenings can increase quality of life and patient satisfaction – those who care for patients are becoming more and more aware of this.
Distress screening has been a requirement by the accrediting group the American College of Surgeons Commission on Cancer since 2015. The National Comprehensive Cancer Network also updated its guidelines on distress management to help physicians triage which patients should receive care to address distress.
In July 2015, guest blogger Nina Miller from the American College of Surgeons’ Commission on Cancer wrote about the need to establish standards of care for cancer survivors. Within her blog, she discussed the three standards that the Commission implemented in 2015, one of which is Screening for Distress and Psychosocial Needs.
Last year when these standards were released, it was the first time distress screening was formalized. The screening intends to:
- provide an opportunity for providers to intervene with persons who may be at risk for becoming “lost in transition” to critical follow-up care
- provide information, resources, and support to patients transitioning from active treatment to rehabilitation, end of life, or health and wellness
Tools and Acceptance of Distress Screening
There are several distress screening tools currently used in the health care setting.
Our partners at Cancer Support Community are extremely active in distress screening. They developed a screening tool – the “first comprehensive cancer distress screening program” – for community-based hospitals, physician practices and advocacy organizations.
“Evidence shows us that Psychosocial Distress and the stressors of the cancer experience change overtime. Early in a diagnosis, the amount of information and new people you meet can be overwhelming. During treatment there are side effects, appointments, bills, support from loved ones, etc. to keep track of and coordinate. Often people underestimate the stress associated with the conclusion of treatment and the “return to normal.” Cancer does not happen in a vacuum; therefore, like and its ups and downs continue on and can be exacerbated by a health crisis. It is beneficial to have reliable and trustworthy emotional support during these times.” – Jane Bolduan Lomax, PsyD
The tool helps integrate screening, referral and follow-up care through a single, streamlined, program.
We’re also seeing congressional support! The Senate Appropriations Committee approved language that supports the National Cancer Institute to include distress screening at the National Institute of Health Clinical Center and within clinical trials that they fund.
The language will move to a full Senate vote soon. Stay tuned for updates.
What can you do?
As a cancer patient, it’s important to understand and talk about your mental health in addition to your physical health. Talk to your doctor about distress screening.
Research shows that early identification of emotional distress and follow-up treatment (counseling and support services) helps everyone involved.
If you feel like your level of distress is serious, talk to your health care team as soon as possible. Request psychosocial support and counseling from a licensed clinical social worker or licensed psychologist if you are experiencing emotional distress.
If you need to speak with someone, call the Fight CRC Resource Line. A live counselor is available to help you.
Emotional distress is common, help is available.