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Study determines that Pain Buddy app may aid in reduction of pain severity

A child, resting in bed, fires up her 7-inch tablet and opens an app.

She selects from a variety of cartoon avatars — such as a panda or penguin — and backgrounds that include a colorful ocean floor with fish and other sea creatures.

Game on.

But this isn’t a typical game. It’s a kid-friendly tool that allows the child, who is being treated for cancer, to report the severity and type of pain she’s experiencing from her home — information her doctor can access in real time.

Playing their way to pain reduction

The app, named Pain Buddy, may aid in the reduction of pain severity in children during cancer treatment, according to results of a pilot study recently published in the online journal Pediatric Blood & Cancer.

The study found that Pain Buddy may be especially beneficial in helping children who have high levels of pain.

Pain Buddy app
Pain Buddy app

Pain Buddy is the brainchild of Dr. Michelle A. Fortier, a CHOC pediatric psychologist who is also a faculty member of the UC Irvine Sue & Bill Gross School of Nursing.

Dr. Fortier, who specializes in pain management in children, was principal investigator of the recently published pilot study. that was based on clinical studies of CHOC patients monitored by pediatric oncologist Dr. Lilibeth Torno and pediatric oncology nurse practitioner Christine Yun.

“Pain management is an important part of cancer survivorship, and I think Pain Buddy’s potential for use is very broad,” Dr. Torno says.

Most of the 48 children participating in the eight-week study had been diagnosed with leukemia. All were between the ages of 8 and 18. Results of this particular study come amid ongoing studies on the Pain Buddy app at other sites., Results of the comprehensive research effort, which will track 206 children, are expected in three years, Dr. Fortier says.

Pain Buddy app
The Pain Buddy app allows users to identify their pain through various games, like sorting balls into baskets.

The gap in children’s pain management

Pain Buddy, Dr. Fortier explained, was developed a few years ago to address a gap in pain management of kids at home compared to kids in the hospital, where it’s easier for doctors and nurses to stay on top of patients’ needs. The 48 children who participated in the pilot study spent a lot of time at home.

Tapping the expertise of professional app developers and researchers at UCI in the California Institute for Telecommunication and Information Technology (Calit2), Dr. Fortier and several other colleagues came up with a way for children to rate their pain as they were feeling it from home.

“Most kids experience pretty moderate to severe pain throughout their cancer treatment, and this pain just wasn’t sufficiently being addressed when the patients were at home,” Dr. Fortier says. “And when we think about pain assessment, we’re really terrible retrospective reporters of our pain experience.”

But with Pain Buddy, users can say how much they’re hurting, and where, as it’s happening.

“Pain can come from the cancer itself, such as a solid tumor, and it can come from treatment procedures,” Dr. Fortier says. “For example, lots of skin-breaking procedures occur during cancer treatment. And treatments like chemotherapy can cause nerve pain, inflammation of the gastrointestinal tract and mouth sores.”

Pain Buddy app
The Pain Buddy app allows users to describe their pain with word bubbles, and can alert the care team.

In addition to completing a pain and symptom diary twice daily, the app automatically alerted the participants’ medical teams about such symptoms as nausea, itching, sadness and redness.

With a touch of a finger, the patients could select word bubbles to indicate descriptions — such as bad, annoying, or and terrible — to describe their pain.

Clinicians, in turn, could promptly address any symptoms that warranted intervention.

Learning skills to cope with pain

A key component of the Pain Buddy app, which for now only has been used by the pilot study participants, is the incorporation of coping skills shown to be effective in the management of pain, such as deep breathing, progressive muscle relaxation and guided imagery.

During these skills training exercises, patients could accumulate coins and, visiting a virtual store, customize their personal avatar and buy additional background themes.

Pain Buddy app
The Pain Buddy app can help patients learn coping skills.

Pain Buddy represents an effective partnership between parents, young cancer patients and the health care institutions that treat them, Dr. Torno says.

“Our focus on cancer survivorship begins on the day of diagnosis,” Torno says.

CHOC’s After Cancer Treatment Survivorship (ACTS) program features a multidisciplinary team of clinical experts who monitor the late effects of cancer and develop a plan for long-term surveillance to ensure the best possible outcomes. Every child at CHOC who has gone through cancer therapy eventually lands in the ACTS program.

Dr. Fortier said the ultimate goal is to further refine Pain Buddy and license the app to hospitals for widespread use.

“The goal is to have every kid undergoing cancer treatment — from sarcoma patients to those with bone and other cancers — to have the ability to use Pain Buddy.”

Clinical Trials Continue the Advancement of Pediatric Oncology Treatment

Children, adolescents and young adults with cancers that do not respond to traditional treatments continue to find new treatment options because of CHOC’s extensive efforts and active engagement in clinical trial research.

The Hyundai Cancer Institute at CHOC is a member of the Children’s Oncology Group (COG) and one of only 21 elite facilities in North America and three in California that has received a prestigious Phase 1 clinical trial designation to offer COG’s investigational, potentially promising and innovative clinical trials. COG is the most experienced organization in the world when it comes to the research and development of new therapeutics for children and adolescents with cancer.

“I’ve witnessed the dramatic progress made in the survival of our pediatric patients because of clinical trials,” says Dr. Ivan Kirov, medical director of oncology and the Hyundai Cancer Institute at CHOC. “Clinical trials are the mortar behind our successes here at CHOC.”

Dr. Ivan Kirov, medical director of oncology and the Hyundai Cancer Institute at CHOC Children’s
Dr. Ivan Kirov, medical director of oncology and the Hyundai Cancer Institute at CHOC

CHOC currently offers more than 140 clinical trials in varying phases, including multiple pharmaceutical industry-sponsored clinical trials. Besides membership in COG, CHOC is also a member of the Therapeutic Advances in Childhood Leukemia & Lymphoma consortium (TACL), which offers novel treatments in Phase 1 studies for childhood leukemia and lymphoma; the Lymphoma consortium; and the UC Children, Adolescent and Young Adults Cancer Consortium, which includes all of the University of California pediatric oncology programs.

Among the research at CHOC is an upcoming clinical trial for the treatment of diffuse intrinsic pontine glioma (DIPG), a highly aggressive and one of the most difficult-to-treat childhood tumors.

“We are in the process of opening and initiating this clinical trial which, in my opinion, will be extremely important for patients in the future,” Dr. Kirov says. “DIPG is a brainstem tumor which is universally deadly, and very few patients survive more than a year, or even six months. CHOC, the Dana-Farber Cancer Institute in Boston and Lurie Children’s Hospital in Chicago are the only three sites where this new study will be offered. This study will explore a new vaccine for the treatment of DIPG in combination with checkpoint inhibitors. We’re hoping this study will be open in the next several months to offer hope to patients with this disease.”

While clinical research is fundamental to advancing pediatric oncology treatments, Dr. Kirov said the trials themselves are only part of CHOC’s comprehensive approach to helping children and young adults survive cancer.

“These cutting-edge medications and products we are testing, including new targeting agents, monoclonal antibodies and various types of small molecules and vaccines, for example, require an extremely strong supportive and clinical research infrastructure, which CHOC can offer,” says Dr. Kirov. “Our highly educated clinical research coordinators, physicians-scientists, nurses, educators, pharmacists, and other professionals, along with our unparalleled supportive services for both patients and their families, such as social workers, psychologists, child life specialists, palliative care experts and spiritual services, make our patients’ experiences at CHOC unique, and I think this is why CHOC truly stands out. In fact, many patients who come to CHOC for Phase 1 studies express their desire to stay here even after the study is completed, which really speaks very highly of CHOC and the continuum of care and support we provide to young patients and their families.”

Our Care and Commitment to Children Has Been Recognized

CHOC Hospital was named one of the nation’s best children’s hospitals by U.S. News & World Report in its 2020-21 Best Children’s Hospitals rankings and ranked in the cancer specialty.

Learn how CHOC’s pediatric oncology treatments, expertise and support programs preserve childhood for children in Orange County, Calif., and beyond.

Investigational Drug Study Leads to FDA Approval for Fenfluramine in Treatment for Dravet Syndrome

Children who experience seizures associated with Dravet syndrome have a new medication option, thanks to research at CHOC that helped gain the recent approval of the U.S. Food and Drug Administration (FDA).

Dravet syndrome is a sodium channelopathy that causes an intractable, difficult-to-control form of epilepsy beginning in the first year of life, as well as significant developmental and motor impairments. Many patients with this rare and severe type of epilepsy experience prolonged and unrelenting seizures and are at risk for SUDEP (sudden unexpected death in epilepsy).

Dravet syndrome is difficult to treat with the antiepileptic medications currently available in the United States, but the FDA has recently approved FINTEPLA® (fenfluramine) for the treatment of seizures associated with Dravet syndrome in patients 2 years of age and older. Dr. Mary Zupanc, pediatric epileptologist and co-medical director of the CHOC Neuroscience Institute, was a key investigator in one of the two international drug studies that led to U.S. FDA approval.

Dr. Mary Zupanc
Dr. Mary Zupanc, pediatric epileptologist and co-medical director of the CHOC Neuroscience Institute

“The drug we recently trialed, fenfluramine, showed a significant reduction in convulsive seizures and overall seizures, which helped improve the quality of life not only for patients with Dravet but for their families as well,” Dr. Zupanc said.

Study 1 trialed 0.2 mg/kg/day or 0.7 mg/kg/day. The patients on the higher dose had a 70% reduction relative to placebo in monthly convulsive seizure frequency. And 70% of the patients on the higher dose had at least a 50% reduction in their monthly convulsive seizures compared to 7.7% of patients on placebo. Patients on the lower dose of fenfluramine had a 31.7% reduction relative to placebo in monthly convulsive seizure frequency, and 34.2% of patients on the lower dose had at least a 50% reduction in their monthly convulsive seizures.

In addition to reducing the monthly convulsive seizure frequency in patients whose seizures were not adequately controlled on one or more antiepileptic drugs, most study patients responded to treatment with fenfluramine within three to four weeks, and the effects remained consistent over the treatment period. Dr. Zupanc remarked that fenfluramine’s effectiveness could be “life-changing” for patients with Dravet.

Fenfluramine — used on its own and also paired with phentermine in the popular weight-loss combination known as “fen-phen” — was withdrawn from the U.S. market in 1997 after reports of heart valve disease and continued findings of pulmonary hypertension. Due to these risks, subjects received frequent EKGs and echocardiograms throughout the investigational trial. No valve disease or hypertension was found, but a decrease in appetite and some observations of a minor increase in irritability were noted.

Dr. Zupanc is optimistic about fenfluramine’s application for Dravet, but advised that it is only part of an overall treatment plan. “If a physician has a patient with Dravet syndrome, I would make sure the patient gets referred to a Level 4 epilepsy program, the highest designation for epilepsy centers,” Dr. Zupanc said. “CHOC is a level 4 epilepsy center, which means we do investigational drug studies, vagus nerve stimulation, epilepsy surgery, ketogenic diet and provide a full-service epilepsy program with six epileptologists with board-certification in epilepsy. Because we have participated in these [investigational] studies, we are on the ground floor and know how to dose these drugs and adjust these medications.”

Our Care and Commitment to Children Has Been Recognized

CHOC Hospital was named one of the nation’s best children’s hospitals by U.S. News & World Report in its 2020-21 Best Children’s Hospitals rankings and ranked in the neurology/neurosurgery specialty.

Learn how CHOC’s neuroscience expertise, coordinated care, innovative programs and specialized treatments preserve childhood for children in Orange County, Calif., and beyond.

Virtual pediatric lecture series: vision screening refresher

The CHOC virtual pediatric lecture series continues with Vision Screening: Refresher for Primary Care Clinicians.

This online discussion will be held Monday, Sept. 28 from 12:30 p.m. to 1:30 p.m. and is designed for general practitioners, family practitioners and other healthcare providers.

Dr. Rahul Bhola, medical director of ophthalmology at CHOC, will present information on several topics, including the milestones of visual development and measuring visual acuity in children. Dr. Bhola will also discuss ways to manage common pediatric ocular disorders, as well as how to determine when a child should be referred to an ophthalmologist.

This virtual lecture is part of a series provided by CHOC that aims to bring the latest, most relevant news to community providers. You can register here.

CHOC is accredited by the California Medical Association (CMA) to provide continuing medical education for physicians and has designated this live activity for a maximum of one AMA PRA Category 1 Credit™.

Please contact CHOC Business Development at 714-509-4291 or BDINFO@choc.org with any questions.

MI 1&2 meeting and journal club

CHOC’s MI 1&2 Meeting and Journal Club goes virtual this month to discuss the latest advances in artificial intelligence and innovation.

This two-part lecture will be held Sept. 14 from 4 to 5:30 p.m. and will focus on innovative solutions to problems in pediatric healthcare. This month’s session will feature presentations from several industry partners, including:

  • Casey Clay, director of the escalating behavior program, Thompson Autism Center at CHOC
  • Adam Blum, VPO/CEO and co-founder of Auger AI
  • Paul Auffermann, chief customer officer of Closed Loop AI
  • Zack Muqtadir, founder of ZL Technovation

The MI1 portion of the meeting will take place from 4 to 4:45 p.m. and discuss medical intelligence, including monitoring model accuracy in medical machine learning and artificial intelligence for healthcare.

The MI2 portion discusses medical innovation and will begin at 4:45 p.m. It will include presentations on the impact of artificial intelligence on healthcare and the future, as well as immersive virtual reality training for caregivers of children with Autism Spectrum Disorder.

You can register to join the MI 1&2 meeting here. Journal Club will take place beforehand, from 3-3:45 p.m., and is accessible by Zoom Meeting ID 811 5578 7821.