It’s pretty hard to imagine being diagnosed with cancer and not feeling some level of distress. Distress is defined by the National Comprehensive Cancer Network as “a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioural, emotional), social and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis.”
Cancer or not, I imagine we’ve all been there.
But cancer-related distress isn’t just something inevitable that you have to deal with on your own. Cancer care professionals now recognize it as the “sixth vital sign” in cancer care, following temperature, pulse, blood pressure, breathing rate and pain. This implies that it’s important to routinely assess distress levels, and treat elevated levels when we detect them. Professionals should assess distress at the point of diagnosis and routinely throughout cancer care. However, many care professionals aren’t that great at identifying distress based on a short consultation. Some care providers have developed specific questionnaires to systematically assess many aspects of a person’s level of distress, including symptoms of anxiety and depression, and common problems such as pain, fatigue, sleep difficulties, coping and practical causes of distress such as financial concerns and a lack of adequate drug coverage.
Based on recommendations that all patients be routinely screened for distress, we designed a series of large studies at the Tom Baker Cancer Centre that screened newly diagnosed patients for distress. We compared various screening tools and ways of responding to results to determine the most effective solution. Since 2006, we’ve assessed over 5,000 new patients using touch screen computers and kiosks (see www.6thvitalsign.ca for a demonstration) and directed them to appropriate supportive care services as necessary. We followed up with patients for either three months or an entire year (depending on the specific study) to see how their distress levels changed over time, based on what type of screening they had, compared to patients who received no screening for distress at all.
We found that without systematic screening for distress, patients’ levels of anxiety, depression and distress decreased naturally over a year after diagnosis, but their fatigue and pain levels did not. People who received screening for distress showed decreases over time on all symptoms. Those who were highly distressed benefited the most from having a staff member call to discuss the concerns they identified on the screening tool, and refer them to appropriate services such as counselling or information sessions. Distress decreased the most for people who accessed support right from the beginning. Benefits were strongest for people with lung compared to breast cancer, and for those who received personalized referrals compared to computerized referrals. However, many patients did well with computerized referrals directing them to appropriate resources, especially those who had moderate (rather than high) distress to begin with.
Based on this work, Alberta Health Services, with help from the Alberta Cancer Foundation has recently invested $1 million dollars in screening for distress province-wide. Jurisdictions are phasing in screening at all centres across the province over the next two years. Assess your sixth vital sign at a cancer centre near you.
What’s in the Checklist?
The Personal Well-being Checklist has two sections and takes about five minutes to complete. When you get to the outpatient clinic or treatment area, staff will ask you to do the Personal Well-being Checklist. After you’re done, your nurse or physician will talk to you about it and try to address your concerns.
The first section looks at some common symptoms:
- Shortness of breath
The second section looks at concerns patients may have had in the last week:
- Emotional concerns
- Practical concerns
- Information concerns
- Spiritual concerns
- Social/family concerns
- Physical concerns