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How Are You Feeling Today?

A child-friendly app improves symptom reporting accuracy in young cancer patients

By Laura Raines l Photography by Ann Borden

Story Photo

Janice Withycombe walks a cancer patient through using an iPad app to record his symptoms at Children's Healthcare of Atlanta at Egleston.

In the battle against cancer, new drugs and therapies make the news. Behind the scenes, pediatric nursing researcher Janice Withycombe PhD MN RN CCRP knows that better care leads to better outcomes for young cancer patients, their families, and clinicians.

"Children with cancer will teach you how to live," says Withycombe, assistant professor in the School of Nursing. "Children are incredibly resilient. One way that we can help them through treatment is to recognize and treat symptoms that can impact their quality of life."

Upon joining Emory in 2015, Withycombe found a strong mentor in oncology nursing researcher Deborah Bruner PhD RN FAAN and a strong connection with the Children's Healthcare of Atlanta Aflac Cancer Center, one of the largest and best in the country.

"Childhood cancer is rarer than adult cancer. In order to do our best work, pediatric oncology researchers have to band together," Withycombe says.

Accurate and effective communication is at the heart of her research, which focuses on symptom identification and management in children undergoing cancer treatment and patient/family education for children newly diagnosed with cancer.

Giving children a voice

In the United States, about 15,000 children and adolescents are diagnosed with cancer each year. While most adult cancer patients don't participate in a clinical trial, the majority of children are enrolled because that has become the standard of care.

The federal government mandates that adverse events (AE) during any cancer trial be collected and recorded. There are 790 AE terms according to the National Cancer Institute's Common Terminology Criteria. Almost a third of the AE terms have some subjective component, such as pain, fatigue, or depression.

Research shows that parents or clinicians most often report a child's symptoms, but their rating doesn't always reflect the child's experience. And they often under-report the burden of cancer and treatment on the patient.

"We were missing the child's voice, so our team designed a survey for the iPad that children can use so they can tell us how they're doing," Withycombe says.

The Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) includes 130 questions that assess 62 symptoms. Its language is kid-friendly, based on what researchers discerned from talking with 117 children with cancer, from ages 7 to 15, at seven hospitals in the United States and Canada. All of the hospitals are now testing the survey.

"When I asked a young patient what she thought of the survey, she said, 'It was easy, because it was all about me.' That's exactly what we were trying to do—make it easy for children to tell us how they are feeling and functioning during therapy," says Withycombe. When adopted by more institutions, the pediatric PRO-CTCAE has the potential to increase the accuracy of symptom reporting in clinical trials and improve the care given to young cancer patients.

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Better education, better outcomes

A second research focus for Withycombe stems from her involvement with the Children's Oncology Group (COG), the world's largest organization devoted to childhood and adolescent cancer research. Its 224 member hospitals and cancer centers treat the majority of pediatric cancer patients.

"A few years ago, the COG Nursing Discipline was looking for its next big project. We wanted a topic that hadn't seen much research and one that would make a big difference," she says. "We couldn't find much in the literature about patient/family education for newly diagnosed patients, so a five-year blueprint for COG nursing was designed focusing on how to better educate families."

Depending on their diagnosis, young cancer patients are often hospitalized, from several days to a month, before being sent home under the care of their parents.

"We expect a lot from those parents," says Withycombe. "They have to become medical moms and dads. They monitor symptoms, manage medications, oversee nutrition, and juggle medical appointments in addition to normal family routines. They may have to learn how to give injections, change dressings, assess surgical sites, flush central lines, or operate feeding tubes. They need to be well prepared for discharge. We know that preparedness affects patient outcomes."

A close scrutiny of discharge education would not only help families, but also pediatric oncology nurses responsible for teaching parents what they need to know. Research teams conducted studies to ask institutions about the content of discharge information and when and how they delivered it.

"We learned that hospitals differed on what they taught and who taught it," says Withycombe. "There were no best practices overall, and no national certification for training educators."

Knowing how traumatic a cancer diagnosis is for families, researchers used another study to survey parents about the timing and helpfulness of the instruction they received. Researchers learned that receiving information from different clinicians (doctors, nurses, pharmacists, and psychologists) could add to parents' knowledge but also overwhelm them. Also, few hospitals took parents' individual learning styles into consideration.

When researchers asked different experts about what topics parents were taught, they found a range of subjects. However, 90 percent of those surveyed agreed on 10 topics they considered mandatory for teaching prior to a patient's discharge.

In October 2015, the research team held a symposium that brought together oncology experts to discuss patient/parent education. Afterward, the team developed consensus on recommendations regarding better practices for providing patient/family education for newly diagnosed cancer patients. Recommendations include making the education family-centered and giving the family adequate time and support for receiving care instructions.

"Teaching should be an interprofessional responsibility, with standardized content but with individualized delivery methods," says Withycombe. "The message should be consistent and focus on three areas: diagnosis/treatment, psychological coping, and care of the child."

Just as important, the education should continue across the continuum of care in a supportive environment to optimize learning. "We need to help parents learn, and part of this happens through them asking questions," she says.

Her group published its recommendations in the Journal of Pediatric Oncology Nursing in December 2016. Their work provides a baseline understanding of the best way to teach parents, which better equips health care providers and their patients. There is more work to be done.

"Treatment studies often focus on improving cure rates, but this kind of work can have a similar impact," Withycombe says. "Teaching parents more effectively may lead to fewer hospital readmissions and better treatment compliance, which can improve cure rates for their children."

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