When Associate Professor Michelle Fortier started her fellowship working with children in chronic pain, she knew it was what she wanted to do.
“We took kids who were absolutely not functioning because of pain. They were not going to school, not engaging with friends or family,” Fortier says.
“With some intense intervention, their lives really turned around.”
When she moved to Orange County, the child psychologist noticed that while the region doesn’t have a large chronic pain population, it does have a large oncology one.
“No one was really looking at pain in these kids. I saw that as an opportunity to take my training and expertise and transfer it to a new medical population.”
Fortier is currently leading four studies on the pediatric cancer population as well as their families within the UCI Center on Stress & Health, directed by Dr. Zeev Kain. She wants to help children manage their pain and stress, cope with the aftereffects of cancer and improve health literacy and stress management within the family.
The Pain Buddy app
Primarily for outpatient cancer treatment, Pain Buddy is an app Fortier’s team developed that allows kids to report their pain and symptoms. The healthcare team monitors the reports, looking for patterns of symptoms so they can intervene when they’re worsening.
Pain Buddy also features a 3-D animated character that teaches children cognitive and behavioral skills to manage their pain, including mindfulness, deep breathing, imagery, etc.
The five-year clinical trial funded by the National Cancer Institute is in its third year and has shown some early effectiveness.
Once the study is complete, Fortier wants to disseminate it to hospitals across the country. She’ll also explore ways to tailor the app to cancer type, stage of development, culture or ethnicity.
Addressing healthcare disparities
Fortier and her team have observed that children from primarily Spanish-speaking families tend to have poorer psychosocial outcomes during cancer treatment compared to English-speaking families, regardless of whether the treatment is equitable. Quality of life and functioning are also poorer among this population.
After forming a community based participatory research group for Spanish-speaking parents of children who have had cancer treatment at CHOC Children’s, Fortier realized that they faced significant cultural and systemic barriers to care.
Alex’s Lemonade Stand Foundation has funded the development of a culturally tailored intervention that addresses three targets:
- Health literacy: making treatment decisions, addressing language barriers, communication with healthcare providers
- Wellness and self-care for parents: healthy and culturally relevant cooking, massage and acupressure for stress relief, gardening, and dance-based exercise
- Empowering families as they navigate the medical system: understanding the players, knowing where to go to ask questions
Thriving after pediatric cancer
“We’ve done an amazing job of improving survival rates in children,” says Fortier. “Part of that is treatments have become more aggressive.”
Those aggressive treatments leave children with late effects, including secondary cancers, cancer recurrence, cognitive, behavioral or developmental health issues.
Fortier and her team are currently trying to understand what quality of life is like for children as they transition from cancer treatment to survivorship.
She wants to understand how they move within the healthcare system as well as identify cultural factors that could be playing into late effects.
Minimizing needle sticks
Kids undergoing cancer treatment have to undergo a number painful procedures: port access, IV access, lumbar punctures and more.
To reduce the number of needle sticks experienced by children with leukemia, Fortier follows them as they enter treatment in a phase called “induction.”
During this phase, children are given a steroid to suppress their cortisol production. While this improves the treatment’s effectiveness, the steroid can also cause adrenal suppression.
Usually, a number of blood draws are necessary for measuring cortisol. Yet, saliva can also indicate cortisol levels. Fortier hopes that this can be a way to measure cortisol in leukemia patients without the use of needles.
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