Two new research studies are looking at ways to improve the quality of life (QOL) and survivorship of pediatric patients with cancer while at the same time helping to bridge a recognized communication gap between pediatric and adult care.

Researchers at the University of California Irvine (UC Irvine) School of Medicine Center on Stress & Health in Orange, CA, are developing a mobile application called a “Pain Buddy”, designed to give pediatric patients with cancer a way to record “a diary of pain and pain symptoms” and QOL entries twice daily in real time using a PC tablet, said Michelle Fortier, PhD, a pediatric pain psychologist at UC Irvine.

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Likewise, researchers at the Alfred I. duPont Hospital for Children of The Nemours Foundation in Wilmington, DE, and two assisting hospitals, are introducing children who are newly diagnosed with cancer to a Psychosocial Assessment Tool (PAT) designed to better detect psychosocial risks while undergoing cancer treatment, said Anne Kazak, PhD, ABPP, developer of PAT.

Both studies, part of nearly $30 million in grant funding currently going toward childhood cancer research from the American Cancer Society (ACS),1 should help oncologists:

  • Better understand the physical and psychological pain levels endured by children undergoing cancer treatment
  • Break new ground into nonpharmacologic interventions for pain and distress in pediatric and adolescent patients with cancer
  • Better care for pediatric patients with cancer being treated in outpatient settings
  • Gather patient data that can be entered into a patient’s electronic health records for later use by clinicians treating survivors of childhood cancers

Pediatric patients with cancer undergo intense treatments that, in most cases, involve the use of cancer drugs approved through adult trials, and not specifically developed for children. Children generally get higher doses of these drugs compared with their adult counterparts because children display higher endurance levels to the drugs, said Rebecca Kirch, Director, Quality of Life and Survivorship for the ACS in Washington, DC. “But at such high toxicities of treatment, sometimes patient comfort gets put on the back burner,” said Ms. Kirch.

A surprisingly low number of pediatric-specific oncology drugs come to the US Food and Drug Administration (FDA) for final approval, said FDA Commissioner Margaret Hamburg, MD, in a speech before the Alexandria Summit on Oncology in June 2013.2 “Approval is the last step in the development process. In most cases, there is simply nothing to approve,” said Dr. Hamburg in discussing new cancer drugs for children.

Therefore, getting an idea of just how much pain a pediatric patient with cancer is really enduring is what Dr. Fortier’s Pain Buddy is all about. The Pain Buddy app uses a “Symptom Alert Algorithm” designed in part by nurses experienced in observing pain levels in pediatric patients to identify when pain levels require clinical attention, regardless of what the patient reports, explained Dr. Fortier. The Pain Buddy is also designed to teach pediatric patients with cancer to use nonpharmacologic interventions for pain such as diaphragmatic breathing, mindfulness, visual imaging, distraction, and progressive muscle relaxation, she added. Having a way to truth-detect pain is helpful when health care professionals themselves may lack the skills to honestly gauge their own pain levels, said Dr. Fortier.