Assess Distress in Your Adolescent/Young Adult Cancer Patients

What patient assessment tool takes less than a minute to use and can have a significant impact on the well-being of your adolescent/young adult (AYA) cancer patients?

The Distress Thermometer, says Erin Fusco, DNP, FNP, RN, from the School of Nursing, SUNY Stony Brook, and Memorial Sloan-Kettering Cancer Center (MSKCC), New York City.

In her poster presentation at the 37th annual Oncology Nursing Society Congress in New Orleans (meeting abstract 1341246), Dr. Fusco urged nurses to improve AYA patients’ well-being by assessing them with the Distress Thermometer/Problem Checklist and other resources available from the NCCN (National Comprehensive Cancer Network), which in March released guidelines for the management of AYA patients.

AYAs are defined by the NCCN as people 15 through 39 years of age and by Livestrong as those aged 19 through 39. This period of life, said Dr. Fusco, is a particularly challenging one, even in people who are cancer-free, since it is characterized by “crucial developmental milestones,” personally, educationally, and professionally.

A vulnerable, underserved population
“As nurses we need to realize that the AYA population... are underserved, they’re late to diagnosis, and their outcomes have not improved since 1975,” Dr. Fusco said.

In fact, as the NCCN emphasizes, while great strides have been made in cancer management for pediatric patients and adults over 40 years of age, survival rates in the 70,000 AYAs diagnosed with cancer in the US each year have not changed in the last two decades. By not addressing distress in AYA patients at the point of care, Dr. Fusco explained, “we’re [managing] their cancer but we’re sending them out into the world psychosocially broken.”

Her assessment of the current medical literature involved an integrative review of articles accessed from electronic databases, Medline, PubMed, and CINAHL through December 2011. Each database was searched using the phrase “Young Adult and Adolescent and Cancer.” This term was searched together with “Emotional Distress” (retrieving 51 articles on PubMed alone); “Uncertainty in Illness” (retrieving eight articles on PubMed); and, finally, a combination of all three phrases. The results showed uncertainty in illness is a major factor affecting AYA cancer patients, with 75 percent of retrieved articles describing the negative impact of distress and uncertainty in this patient population.

No articles directly explored the relationship between uncertainty and distress regardless of age, and no article recommended using the AYA-targeted guidelines for distress assessment and intervention. However, studies did mention use of the Distress Thermometer and of other scales, including the Post-Traumatic Stress Diagnostic Scale (PDS), as good tools for psychosocial assessment.

It is important for nurses to proactively initiate discussions about distress, since most distressed patients will not approach their healthcare providers about the problem, Dr. Fusco emphasized. According to the NCCN, while one-third of cancer patients in the US experience significant distress, only 5 percent of these patients obtain psychological help.

The effects of distress -- which is defined as symptoms of anxiety and depression that may cause sleep and appetite problems, as well as difficulty concentrating and performing activities of daily living -- can “affect how patients cope with their cancer and their ability to follow treatment recommendations,” she said.

The Distress Thermometer: What is it, and how is it used?
The Distress Thermometer was originally developed, and tested in the late 1990s, for men with prostate cancer by Andrew Roth, MD, from MSKCC.

It is a scale on which patients can rate distress level during the past week, from 0 (no distress) to 10 (extreme distress). A 10-item problem checklist asks the patient about recent personal difficulties, such as:

• Practical problems (housing, insurance, work/school, transportation, child care)
• Family problems (dealing with partner, children)
• Emotional problems (worry, sadness, depression, nervousness)
• Spiritual/religious concerns (relating to God, loss of faith)
• Physical problems (pain, nausea, fatigue, sleep, getting around, bathing/dressing, breathing, mouth sores, eating, indigestion, constipation/diarrhea, bowel changes, changes in urination, fevers, skin dry/itchy, nose dry/congested, tingling in hands/feet, feeling swollen, sexual issues)

During the problem checklist portion of the assessment, there’s also an opportunity for patients to mention any other recent concerns or problems.

The Distress Thermometer also provides a good gauge for when a patient needs to be referred to a chaplain or for psychological counseling.

What Distress Thermometer scores should prompt a referral?
Similar to pain scores, a Distress Thermometer score of 4 and higher indicates the need for a referral. “If the patient is 4 and above, we need to get a psych referral, and if [the patient is] experiencing any spiritual distress, [he or she] should get a chaplain referral at that point,” she said.

One of the recommendations that Dr. Fusco is trying to make at MSKCC is formal referral of all patients with Distress Thermometer scores of 7 or higher for psychiatric counseling. “If you have [a] distress [score] of 7 and above, that should warrant an official psychiatry referral,” she said. “If we grade you from a 4 to a 7, which is mild-to-moderate distress, maybe [that patient] can just get a social worker referral.”

Dr. Fusco strongly advises using the NCCN Website to access resources for assessing, grading, and addressing a variety of patient symptoms and side effects besides distress. NCCN offers validated guidelines for use across a wide range of interventions in supportive care, and the grading systems provide a framework for consistent and reproducible data-gathering, for nursing research to improve clinical care.

To learn more, please watch the video interview with Dr. Fusco below.