Study finds adolescent and young adult blood cancer patients experience psychological trauma

Researchers at the University of Chicago Medicine Comprehensive Cancer Center have found that many adolescents and young adults (AYAs) diagnosed with blood cancers, or hematologic malignancies, face significant psychological trauma during and after treatment. And, this type of distress is often overlooked by health care providers.

Approximately 70,000 people aged 15-39 in the U.S. are diagnosed with cancer each year, according to the National Cancer Institute, and hematologic malignancies like leukemia and lymphoma are among the most common cancer diagnoses in AYAs. Though blood cancers only account for about 8 percent of new cancer cases in the U.S. each year, they account for about 20 percent of cases in the U.S. AYA population.

For this study, an interdisciplinary research team recruited AYA patients with acute leukemia (myeloid or lymphoblastic) or lymphoma (non-Hodgkin lymphoma or Hodgkin) who were undergoing treatment or were in remission within two years of therapy completion. Of the 61 participants, 64 percent were male and the median age at diagnosis was 26.

Participants were interviewed by a trained research assistant to assess levels of anxiety, depression and posttraumatic stress (PTS) using the State-Trait Anxiety Inventory, the Center for Epidemiological

Studies-Depression Scale and the Posttraumatic Stress Disorder Checklist-Civilian Version. They also filled out a questionnaire that included a self-reported prior history of psychological impairment.

The researchers found that 23 percent of participants met the criteria for anxiety, 28 percent met the criteria for depression and 13 percent met the criteria for PTS. Overall, more than one third of participants exhibited one or more psychological impairments. In these patients, psychological distress was not associated with gender, age, type of blood cancer or stage in treatment. The findings were published in the journal Cancer in January.

"Hematological malignancies are much rarer and tend to occur in younger people. And, we tend to see younger people as more resilient, but that may not be the case," said Christopher Daugherty, MD, professor of medicine and director of the Supportive Oncology Program at the University of Chicago Medicine. Daugherty said the findings could be due in part to the intensity and length of treatment for blood cancers, which involves several courses of chemotherapy followed by maintenance chemotherapy for up to two years from the day of diagnosis. Additionally, AYAs face a high threat of cancer recurrence especially in the early stages of survivorship.

"You really can't take someone out of their world for six months, a year, two years, treat them with toxic chemotherapy for a life-threatening illness and then just say, 'I'll put you back in your world and you'll be fine,' he said. "It's probably going to change them in some way."

In addition to patient participants, 30 health care providers were also surveyed, which revealed a level of inaccuracy and inconsistency in provider perception of patient mental health.

"I think the providers provide excellent care, but it's a multidisciplinary model," said Fay Hlubocky, PhD, a clinical health psychologist and research ethicist at the University of Chicago, who believes mental health care experts should be an integral part of all cancer treatment plans. "I don't think it can just be one person that addresses the distress. It really has to be the whole oncology team."

Other researchers involved in the study include Wendy Stock, MD, Anjuli Seth Nayak Professor in Leukemia; Jennifer McNeer, MD, assistant professor of pediatrics; and Lori Muffly, MD, who was a University of Chicago senior fellow at the time of the study and is now a clinical assistant professor at Stanford Medicine. The study was made possible by an American Society of Clinical Oncology (ASCO) - Conquer Cancer Foundation Young Investigator Award earned by Muffly in 2013.

Both Daugherty and Hlubocky hope the study's findings will encourage other researchers to seek funding to evaluate the psychological effects of cancer, and also encourage dialogue between patients and doctors.

"We're glad that this paints a picture and provides awareness to the oncology community as a whole, as well as empowers patients to be able to really talk to their providers," Hlubocky said.

Share your story:

Are you a blood cancer patient who has had difficulty conveying treatment-related psychological distress to your provider? Or, are you a physician who treats hematological malignancies and has firsthand experience with the difficulties of identifying psychological morbidities in your patients? We'd like to hear from you. Email to share your story with our researchers.

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