Liza-Marie Johnson, MD, was a pediatric resident in Boston when she noticed how teenagers with cancer reacted when fellow patients died.

“Adolescent patients were all very close to each other and were very upset when another patient died, particularly if the patient was also a teenager,” she said. “When their parents weren’t around, these patients would often talk to their nurses about their fears and anxieties.”

But when Johnson went to the medical literature for insight on how to support her patients, she was disappointed. Information was scarce and focused mainly on parental death. The limited studies about the loss of a peer typically involved healthy adolescents following a school mate’s death.

Tracking the prevalence of loss in the lives of adolescents and young adults with cancer

Today Johnson is an assistant member of the St. Jude Department of Oncology. She is the lead author of recently published research in the journal PLOS One that offers a snapshot of the prevalence and impact of loss in the lives of teens and young adults with serious illnesses, primarily cancer.

Johnson surveyed 153 St. Jude patients who were either receiving treatment for cancer or a serious blood disorder such as aplastic anemia or had completed therapy within the previous three years. Participants were 13 to 21 years of age.

The analysis found the patients were more likely than adolescents in the general public to have experienced the death of relatives, friends or other adults, particularly the death of friends. Thirty-seven percent of patients reported such losses, compared to 10.8 percent of their peers in the general public. Two-thirds of the peer deaths were cancer related.

Patients were also more likely to experience multiple losses than the average adolescents, with 61 percent of patients experiencing two or more deaths compared to 40 percent in the general public.

Two-thirds of patients reported that they slowly or never got over the death of someone close to them. One-third of patients said they rarely or never talked about even a “very significant” loss. Johnson noted that silence may make a death more difficult to process and put patients at greater risk for depression, anxiety and other problems.

There were hopeful results, though. Researchers found the more significant the loss, the more likely a patient was to discuss the death with family members, child life specialists, chaplains, social workers or mental health professionals. In addition, most patients indicated they rarely or never needed additional professional help.

“Teens with cancer share a unique bond. They understand what it is like to lose their hair, feel nauseated from chemo or get transfusions,” she said. “They often bond quickly over their shared experience with illness and then have to think about their own mortality when a friend passes away.”

Providing support during bereavement and grief

The results add to evidence that teens and young adults are “disenfranchised” grievers who would benefit from additional support. “Loss, particularly the death of a parent or friend, increases an individual’s risk for depression, anxiety and somatization,” Johnson said. Somatization is psychological distress that manifests as physical symptoms like headaches and stomach pain.

Long-term survival rates for childhood cancer patients are at an all-time high. Eighty-five percent of cancer patients today will be alive five years after their disease diagnoses. Yet, cancer remains the fourth leading cause of death among U.S. teens, according to the latest figures from the National Center for Health Statistics.

While more research is needed, Johnson said health care providers and parents should take steps now to identify patients who may benefit from additional support following deaths. “One takeaway from this study is that a lot of adolescents don’t talk about their fears of death or the impact when another child passes away. I try and be mindful of the relationships the teens have with other patients and ask about their relationship as a way to start a conversation,” she said.