Why it’s important to acknowledge distress during cancer care and what to do about it
By Teresa L. Deshields and Clorinda Walley
The moment a patient is diagnosed with cancer, one symptom is likely to surface: distress.
Sadness, fear, helplessness, anger, social concerns, depression, anxiety, panic – just about everyone that has cancer suffers distress at some point. Distress affects the way you think, feel, or act, and may make it harder to cope with having cancer, its other symptoms, or its treatment.
Distress is not only a by-product of the cancer experience but a side effect that can worsen your health. Research shows that people who are distressed are less likely to take their medicines or complete their follow-up visits. As a result, patients end up with extra visits to the doctor’s office and emergency room. Distressed patients can also have trouble making treatment decisions and be less likely to exercise or quit smoking. Distress can interfere with sleep and affect how well you can focus or relate to people. If you’re a parent, you might have trouble taking care of your kids.
Distress can occur at any time, although some junctures are more likely than others. Common periods of distress occur upon diagnosis, during a transition in care such as being discharged from a hospital or finishing a treatment plan, or when learning that your health has worsened. Ideally, providers should screen for distress during every health care visit, but certain times in the care continuum are especially important.
Screening for distress is usually a quick process, and when paired with getting help, can yield major benefits. Without standard screening, on the other hand, fewer than half of distressed patients get the help they need.
It is with a deep understanding of the relationship between cancer and distress that the National Comprehensive Cancer Network® (NCCN®) and NCCN Foundation®, in collaboration with the national non-profit health care foundation Good Days, have unveiled the NCCN Guidelines for Patients®: Distress, the latest in the NCCN library of patient education materials. The guide is designed to help patients understand the sources of distress and prepare them to talk about what they’re experiencing with providers. The NCCN patient guides [available free at NCCN.org/patients] are easy-to-understand resources based on the same clinical practice guidelines used by health care professionals nationwide.
The Distress Thermometer and Problem List
The newly-released NCCN Guidelines for Patients®: Distress includes a proven process that providers use to gauge a patient’s distress level and the need for intervention: The Distress Thermometer and Problem List. Working off a scale of 0 to 10, the Distress Thermometer measures distress, and the Problem List helps identify the source, whether physical, emotional, or practical. A patient who reports a distress level of 4 or higher should be referred for specialized care based on the cause of distress. For instance, a cancer team can help address pain, nausea or other physical issues, but might refer patients to experts in other fields with specialized knowledge and skills, such as chaplains for spiritual concerns, social workers for practical issues such as child care and financial challenges, and psychologists or psychiatrists for emotional or coping difficulties.
Assessing distress is a key part of cancer care. It helps focus the patient’s team on managing your overall care and well being. For these reasons and more, it is important to understand and equip yourself with tools to alleviate distress by taking a comprehensive approach to dealing with it, both personally and with your cancer care team.
Teresa L. Deshields, PhD, ABPP, is vice-chair of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) Panel for Distress Management and manager of the Counselling Service at the Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine.
Clorinda Walley is Executive Director of Good Days, a national, independent 501(c)(3) non-profit charitable organization that provides financial assistance to patients so that they do not have to choose between access to medicine they need and affording everyday living.