A gain against pain

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.

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

A screenshot of the Pain Buddy app
Pain Buddy app

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, Fortier says.

Pain Buddy, Fortier explains, 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), 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,” 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,” 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.”

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 terrible — to describe their pain.

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

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

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.

A screenshot of the 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.

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.”

Learn more about the Hyundai Cancer Institute at CHOC Children's

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Olivia’s Journey with Music Therapy

Olivia was unexpectedly born two months premature and spent the first seven months of her life in the CHOC Children’s neonatal intensive care unit (NICU). During some moments of their extended NICU stay, her parents weren’t sure if they would ever get to take their baby girl home.

From the day she was born, Olivia had been exposed to a high level of stimulation in the hospital setting. Despite the NICU’s environment of healing, the beeping of machines, and steady flow of clinicians in and out of her room had overwhelmed Olivia and made her weary of physical touch.

“Even though the doctors and nurses were very gentle with her, and everything was done with her best interest in mind, it’s a natural outcome for someone who has spent their entire life thus far in a hospital to be apprehensive of physical touch,” says Leilani, Olivia’s mother.

The NICU’s developmental team quickly saw that Olivia would benefit from music therapy, and introduced Olivia’s family to Brie Mattioli, a board-certified music therapist at CHOC who specializes in the NICU setting.

Initial goals of music therapy for Olivia included pain management, learning how to self-soothe, and self-regulation. Once her pain improved, she could show more self-expression and even develop preferences for certain types of music. (Her favorite song is “Rise Up” by Andra Day.)

Sometimes Brie’s goal was to help Olivia get to sleep, which is healing. During other sessions, their goals were focused on development and stimulation.

The calming effects of music therapy was just what Olivia needed.

Afterall, she underwent her first in a series of surgeries when she was just 2 weeks old. During prenatal scans, doctors discovered that Olivia had enlarged kidneys, and at birth they discovered her stomach was enlarged as well. Surgery was a priority. Under the care of Dr. Peter Yu, pediatric general and thoracic surgeon, Olivia’s intestines were repaired. Another surgery, when Olivia was 2 months old, shortened her lengthy spinal cord.

Olivia also showed traits of Noonan Syndrome ― a rare genetic disorder that affects one in 1,000 to one in 2,500 people. Noonan Syndrome is commonly associated with physical characteristics like atypical facial characteristics and a short stature, and clinical symptoms like heart defects, bleeding problems, feeding issues, developmental delays and malformations of bones in the rib cage.  Although Olivia seemed to exhibit mild physical characteristics of the syndrome, she displayed prominent clinical symptoms.

While she underwent genetic testing for Noonan Syndrome, Olivia’s care team also indicated that she was a candidate for genomic sequencing, the process for determining someone’s complete DNA sequence. Through a partnership with Rady Children’s Hospital, some critically ill infants and children in CHOC’s intensive care units have access to rapid whole genome sequencing. The research collaborative intends to decrease the time between an acute diagnosis and the implementation of effective treatment for difficult-to-diagnose cases. Olivia was genetically tested as were her parents. Two weeks later, the results came in. Neither parent tested positive for Noonan Syndrome, but Olivia did. Since neither parent was a carrier, this meant that Olivia had a uniquely altered gene that resulted in the syndrome.

“When the results came back, we were in disbelief and grieving,” Leilani recalls. “The news was unexpected and heartbreaking. We had never heard of Noonan Syndrome and we had done most of the genetic testing offered during my pregnancy. Our baby was so innocent, and she didn’t ask for any of this. I found myself fast-forwarding to the future and wondered what life would look like for her.”

Music as a journey to healing

While in the hospital, Olivia saw Brie four times a week for music therapy. The more music therapy sessions Olivia had, the more relaxed she became in a sometimes-stressful hospital environment.

“When bodies are relaxed, they heal better,” Brie says. “More opportunities for relaxation mean more opportunities for healing, positive gains and progress.”

In addition to helping patients make progress towards clinical goals, music therapy can provide a sense of normalcy to families in the midst of an emotional time.

“Music promotes a sense of positivity and peace in the room,” Brie says. “It wasn’t the nursery they planned to bring their baby home to, but it provides a sense of normalcy to families.”

The practice resonated with Leilani, who had even considered pursuing a career in music therapy in college. While pregnant with Olivia, she would frequently play music, everything from Ed Sheeran to N*SYNC for her daughter.

“My pregnancy was difficult, and music had always been a form of therapy to me,” Leilani says.

When Olivia was discharged from the NICU, her parents were given a CD specially recorded by Brie with Olivia’s favorite music therapy songs so she could continue healing at home.

“No parent signs up to be in the hospital for all those months,” Leilani recalls. “But I am so happy that CHOC was there when we needed them. CHOC was the right place for Olivia.”

Learn more about music therapy at CHOC

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What is a Clinical Trial?

Children with life-threatening conditions are often candidates for clinical trials. If your child has a serious illness, your doctor might talk to you about enrolling your child in a clinical trial.

Carefully conducted clinical trials are performed in human participants to provide answers to questions such as:

  • Does a treatment work?
  • Does it work better than the standard existing therapy?
  • Does it have side effects?

“Through clinical trials, doctors find new ways to improve treatments and the quality of life for people with disease. They also give children with rare or difficult-to-treat conditions, such as certain forms of cancer, access to innovative treatments,” says Dr. Van Huynh, a pediatric oncologist at the Hyundai Cancer Institute at CHOC Children’s, and the CHOC principal investigator for the Therapeutic Advances in Childhood Leukemia/Lymphoma Consortium, a group of children’s hospitals and universities that work to quickly develop and carry out clinical trials. The consortium develops phase I and phase II clinical trials of new therapies and novel therapy combinations in recurrent childhood leukemia and lymphoma.

dr-van-huynh-choc-childrens-pediatric-oncologist
Dr. Van Huynh, a pediatric oncologist at CHOC Children’s.

Clinical trials are standard practice in cancer treatment for children, adolescents and young adults. In fact, a higher percentage of newly diagnosed children with cancer and their families participate in clinical trials, perhaps more than in any other field of medicine, according to Dr. Huyhn. All clinical trials are voluntary and information collected is confidential. Participants can withdraw from a trial at any time, for any reason.

“Some clinical trials evaluate how well new medications work and whether they are safe to use. Other clinical trials explore whether we can use medications in new combinations or at different doses to improve survival or reduce short-term side effects,” says Winnie Stockton, investigational pharmacist at CHOC Children’s. “There are trials that focus on finding the best ways to minimize long-term side effects of certain treatments, and other trials that aim to determine the best dose to give children for medications that have successfully treated cancer in adults.”

winnie-stockton-choc-childrens-investigational-pharmacist
Winnie Stockton, an investigational pharmacist at CHOC Children’s

Types of Clinical Trials

Clinical trials are categorized as Phase I to IV trials.

Phase I

Studies of a new drug are the first that involve people. Participants in these trials are usually the first to receive the new therapy. The drug is tested to evaluate the dosages of the treatment and how often the treatment can be administered. Drugs are given at gradually increasing dosages, and participants are monitored closely for side effects. The goal of a Phase I clinical trial is to find the dose that is best tolerated without causing severe side effects.

Phase II

Once a treatment is found to be safe in a Phase I clinical trial, it is then tested in a Phase II trial to determine if it works. The treatment targets the patients who responded most favorably in Phase I trials. In these trials, doctors may evaluate if the treatment works for a specific type of cancer or illness.

Phase III

Once a new therapy has been determined to be safe and effective, it is then moved to a Phase III clinical trial. These are the studies that most children with newly diagnosed illnesses or cancers will receive. These trials test whether the new therapy is better than the standard treatment.

Phase IV (also known as Post-Marketing Surveillance Trials)

Phase IV studies take place after the drug has received regulatory approval (market authorization) and are designed to provide broader effectiveness and safety information about the new medicine in large numbers of patients, and to compare or combine it with other available treatments. These studies are designed to evaluate the long-term effects of the drug.

When you take part in a clinical trial, you will only be in that one phase of the study. Treatments move through the phases, but patients do not.

“At CHOC, we believe it’s important to conduct research directly with children and adolescents in a facility that is devoted exclusively to the care, quality of life, rights and safety of children of all ages. If a parent is interested in having their child participate in a clinical trial, we currently have over 350 research studies in more than 30 specialties to provide children with the latest treatments,” says Dr. Huynh.

Learn more about research at CHOC

Related posts:

  • A gain against pain
    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 ...
  • Olivia’s Journey with Music Therapy
    Olivia was unexpectedly born two months premature and spent the first seven months of her life in the CHOC Children’s neonatal intensive care unit (NICU). The more music therapy sessions ...
  • Research Leads to More Gratitude
    As my 50-week gratitude tour for all things CHOC Children’s nears its end, I’d be remiss if I didn’t point out how grateful I am for the research that happens ...

Research Leads to More Gratitude

As my 50-week gratitude tour for all things CHOC Children’s nears its end, I’d be remiss if I didn’t point out how grateful I am for the research that happens at CHOC.Research

CHOC is committed to clinical research and understanding the mysteries behind childhood diseases. Because of this, CHOC patients have access to current treatment options but also benefit from the latest in research.

Research is occurring every day at CHOC, and new endeavors begin regularly. Just recently, CHOC opened a stem cell production facility that could one day lead to therapies for neurological diseases in children.

The Research Institute at CHOC Children’s operates two Institutional Review Boards (IRBs), which decide whether proposed research is ethical, that participant consent is sufficient, and that safeguards have been established for participants.

It’s so exciting that CHOC is a research hospital. Scientists’ work today will affect patients for years to come. I am grateful that CHOC has an opportunity to help children today and tomorrow.

Childhood Vaccinations

To ensure maximum protection against diseases, children should receive vaccinations at the correct, recommended age, a CHOC Children’s infectious disease specialist tells Research 360,° a podcast highlighting research at the hospital.

In this segment, Dr. Antonio Arrieta discusses proper timing of vaccinations, dispels myths surrounding vaccinations, and details his current research at CHOC. Listen in to hear more about childhood vaccinations.

Hosted by Executive Director of Research Brent Dethlefs, Research 360° features interviews with scientists, physicians, educators, scientific news-and policy-makers to provide the listening audience with context, and scientific and social commentary intended to engage and inform.

Learn more about CHOC’s Research Institute.