In the 2008 report entitled, “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs,” the Institute of Medicine (IOM) reported that the psychosocial needs of patients with cancer were not being adequately addressed, and by meeting such needs, patients might experience improvement in quality of life. The report highly recommends psychosocial distress screening, referral and follow-up care for all patients.
In the Cancer Experience Registry, CancerSupportSource® is used to erasure concerns related to distress and quality of life. The items listed below are consistently the top areas of concern across the Registry and sub-registries. For participants with Metastatic Breast Cancer, Multiple Myeloma, and Chronic Myeloid Leukemia, pain is also a top area of concern.
- Eating and nutrition
- Worrying about the future or what lies ahead
- Health insurance or money worries
- Feeling too tired to do the things you need or want to do
- Exercising and being physically active
- Worrying about family, children and/or friends
- Changes or disruptions in work, school or home life
- Thinking clearly
- Moving around
- Body image and feelings about how you look
- Sleep problems
In the U.S., most patients are treated in the community rather than comprehensive cancer centers. However, distress screening for patients in the community has been largely non-existent.
To bridge this gap, the Cancer Support Community developed and implemented a distress screening, referral and follow-up program, CancerSupportSource®, to identify the specific concerns experienced by a patient and provide a tailored and desired response. The 25 items are based upon the IOM’s recommended areas of unmet psychosocial need, cover three critical domains (psychosocial, practical, physical) and include a four-item depression subscale.
The program is increasingly being used across broader clinical care or hospital networks. Over the past five years, the cancer health care community has shown a growing commitment to distress screening and integration of psychosocial care as professional organizations have formally recognized that screening, referral and follow-up for psychosocial concerns are critical to ensuring quality cancer care for the whole patient. With the growing recognition of the importance of distress screening across care contexts, our research has evolved to focus on implementation in diverse settings (e.g., community affiliate and physician practices or hospitals).
Implications for Other Research
We are currently exploring best practices for distress screening, referral and follow-up. We are studying the process for integrating distress screening in the clinical flow and determining best points for follow up screening. This also involves understanding the experience of distress into survivorship and exploring if long-term distress screening might capture and contribute toward alleviating distress for those many years from a diagnosis.
Another key area of research involves exploring the benefits of distress screening on patient outcomes and system cost savings. We are interested in exploring if the use of distress screening results in cost savings for hospitals and the broader health care system as patients experience lower distress. As the integration of psychosocial care in cancer care continues to evolve, we continue to prioritize identifying and alleviating distress for all those affected by cancer.