February 5, 2020

Giving young cancer patients a voice

Madison, Wis. — Sending friends and family an update about how you’re feeling at any given time – happy, stressed, bored – can be as easy as shooting off a text message or posting to social media. But when it comes to health, keeping your doctor or healthcare provider informed is not always so quick or straightforward.

Using the same technology that helps us stay socially connected, Kathleen Montgomery, PhD, an assistant professor of nursing and new member of the UW Carbone Cancer Center, studies how the symptoms of pediatric patients with advanced cancers change over time. In doing so, she and her research team help young patients find their voices and communicate their experiences during a vulnerable time.

“For children with advanced cancer, nurses often go to the parents about their child’s symptoms, even into adolescence,” said Montgomery. “Historically, I think that’s because we don’t want to make young patients talk about how they feel if it’s going to make them anxious or add burdens.”

To better understand the experiences and symptoms of pediatric oncology patients, Montgomery led a multi-site study where patients and their parents could report symptoms in surveys sent through text messages. Responses could be sent in from any location, not just at a clinic. The research team heard from patients during treatment, recovery, relapses, and in some cases, even up to the end of a patient’s life.

“We had children choosing to self-report their symptoms within two weeks of death, which is game-changing for understanding these patients’ experiences,” Montgomery said. “This really showed us that we can do this type of study and ask these questions in a gentle way that doesn’t add burden to the patients.”

Montgomery and her team found that during the study parents tended to over-report the number of their children’s symptoms, but they also under-reported the severity of the symptoms their children actually experienced.

“I’ve definitely found this finding reflected in my bedside practice,” said Kaylee Vos, RN, a pediatric oncology care team leader at the American Family Children’s Hospital and a research team member. “I often try to have the child report their perceptions before parents do to avoid skewing the child’s report or to avoid unnecessary interventions.”

In addition to gaining a clearer picture of patients’ medical needs, the information gained in this study may help other patients make more informed choices about their care.

“If we can have a better understanding of the real symptom experiences, then we can provide families what they need to know to make decisions about treatment,” said Montgomery. “We can help them understand the symptom burden for a treatment they are likely going to be signing onto.”

One of the most challenging experiences faced by pediatric patients with advanced cancers and their families are conversations about end-of-life care. For one family that participated in Montgomery’s study, the electronic symptom surveys helped them navigate this distressing time.

“A nurse practitioner opened up this family’s symptom report and noticed that the child, who was in hospice care, recorded their pain at very high levels of distress, but the mom reported it as not very distressing. This prompted the nurse practitioner to reach out,” said Montgomery. “This mother took beautiful care of her child but was not in a place where she wanted to increase their pain medication because she was afraid of not being able to interact with her child.”

The nurse practitioner encouraged the family to come to the hospital to get the patient’s pain under control. The child passed away soon after.

“We would never have had the insight to intervene if we hadn’t known this patient’s perspective,” Montgomery said. “This is why we’re doing what we’re doing.”