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 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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9 ways to protect immunocompromised children from COVID-19

We know how frightening the COVID-19 pandemic may be for parents – especially parents of immunocompromised children.

At this time, the full impact of COVID-19 on children, especially those with compromised immune systems, is unknown. However, limited information so far shows that most healthy children with the virus have done well.

Here are some recommendations for steps to take to help protect immunocompromised children from COVID-19:

  1. Call your provider

Call your child’s care provider first if your child has a runny nose or cough. Go to the emergency department if a cough or runny nose is accompanied by fever, or if you are advised to by your doctor, or you believe the situation is emergent.

  1. Follow through with medical appointments

If you have medical appointments that are important to your child’s care, you should attend them. Many providers are offering telehealth appointments. Call your provider’s office to see if this is available, and if your appointment can be conducted through telehealth.

  1. Practice good handwashing

Everyone in the home should consistently wash their hands with soap and water for at least 20 seconds. This is one of the most effective ways to stop the spread of illness. If you don’t have access to soap and water, hand sanitizer is a good alternative.

  1. Cover coughs and sneezes

Cough and sneeze into your inner elbow – and teach children to do the same. It’s also important for everyone to avoid touching their mouths, noses and eyes.

  1. Disinfect high-touch surfaces

It is important to disinfect surfaces that are commonly touched such as the cell phones, tablets, game controllers, doorknobs, light switches, tables and counters.

  1. Practice social distancing

Orders from the governor of California for all state residents to stay home — except for essential needs, such as if your work supports the continuity of critical infrastructure sectors, or if you need to access essential services like food, pharmacies, banks or laundromats – are in place until further notice.  Read more here.

If you must leave your home, wear a mask and maintain at least 6 feet of distance from other people whenever possible.

  1. Follow guidance around face masks

The Centers for Disease Control and Prevention (CDC) recommends wearing cloth face coverings in public settings like grocery stores and pharmacies where social distancing measures can be difficult to maintain. These face coverings can slow the spread of COVID-19 and help people who may have the virus and do not know it from transmitting it to others. It is not necessary for children under the age of 2 to wear cloth face coverings.

The governor of California has mandated that face coverings be worn by the general public when outside the home. This applies to high-risk situations such as entering public spaces; obtaining medical attention; riding public transit; certain work settings; and while outdoors in public spaces when maintaining a physical distance of 6 feet from persons who are not members of your household is not feasible. Exemptions include children age 2 and younger; persons with a medical condition, mental health condition or disability that prevents them from wearing a face covering; the hearing impaired or those communicating with them; persons seated at restaurants while eating or drinking, provided they maintain physical distancing; and those engaged in outdoor work or recreation alone or with household members while maintaining physical distancing from others. Read the full order here.

The CDC offers guidance on how to properly wear a cloth face covering, as well as tutorials on how to make your own mask. See these resources here.

N-95 or surgical masks are not recommended for public use, as supplies are needed by healthcare workers and first responders.

  1. Avoid non-essential travel

We recommend following the CDC’s guidance for travel.

If someone in your family has recently traveled to an area with high COVID-19 activity and is showing symptoms of respiratory illness, it is best for you and your child, immunocompromised or not, to avoid contact with the person for at least 14 days.

  1. Maintain enough medical supplies

Ensure you have necessary medical supplies and prescription medications on hand, check levels of all your medications and let your provider know if you need refills.

This article was updated on July 16, 2020.

Get more information on Coronavirus (COVID-19)

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CHOC recognized as one of nation’s best children’s hospitals

best-childrens-hospitals-7specialtiesCHOC is one of a select number of pediatric facilities nationwide to have been ranked today as a best children’s hospital by U.S. News & World Report.

The following CHOC specialties are honored in the 2020-21 Best Children’s Hospitals rankings: neonatology; cancer; diabetes and endocrinology; neurology and neurosurgery; orthopaedics; pulmonology; and urology. Both orthopaedics and diabetes and endocrinology earned a “Top 20” spot. 

“At CHOC, we are committed to the highest standards of care, safety and service – and this honor reflects that unwavering dedication,” said Dr. James Cappon, CHOC’s vice president, chief quality and patient safety officer and interim chief medical officer. “Not only does this recognition of our excellence in these subspecialties, including two on the top 20 lists, validate our efforts, but it also offers our patients and families additional assurance of our commitment to their health and safety.”

The Best Children’s Hospitals rankings were introduced by U.S. News in 2007 to help families of children with rare or life-threatening diseases find the best medical care available. Only the nation’s top 50 pediatric facilities are distinguished in 10 pediatric specialties, based on survival rates, nurse staffing, procedure and patient volumes, reputation and additional outcomes data. The availability of clinical resources, infection rates and compliance with best practices are also factored into the rankings.

The U.S. News Best Children’s Hospitals rankings rely on clinical data and on an annual survey of pediatric specialists. The rankings methodology factors in patient outcomes, such as mortality and infection rates, as well as available clinical resources and compliance with best practices.

Learn more about Best Children’s Hospitals rankings.

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Nueve maneras de proteger contra la COVID-19 a niños con un sistema inmune comprometido

Sabemos lo espantoso que puede ser para los padres la pandemia de la COVID-19, especialmente aquellos con hijos considerados inmune debilitados.

En estos momentos se desconoce el impacto pleno de COVID-19 en los niños, especialmente aquellos con un sistema inmune debilitado.  Sin embargo, la información, aun cuando limitada hasta ahora, muestra que la mayoría de niños saludables que tienen el virus, han reaccionado bien.

He aquí algunos pasos recomendables para proteger a los niños con inmunidad debilitada de la COVID-19:

  1. Llamar a su proveedor de salud

Llame primero al profesional de salud si su niño tiene escurridera nasal o tos.  Vaya al departamento de urgencias si la tos y escurridera nasal son acompañadas de fiebre, si el médico lo aconseja, o si usted cree que la situación es una emergencia.

  1. Cumplir con asistir a las citas médicas

Si tiene citas médicas consideradas importantes para el cuidado de su niño, debería asistir a ellas.  Muchos profesionales de la salud están ofreciendo citas con el sistema de video llamado telesalud.  Llame a las oficinas de su proveedor para ver si tienen este servicio disponible y si su cita puede ser llevada a cabo por medio de telesalud.

  1. Lavarse bien las manos

Todos en la casa deberían lavarse sistemáticamente las manos con jabón y agua por lo menos durante 20 segundos cada vez. Ésta es una de las formas más eficaces de detener la propagación de enfermedades.  Si no tiene acceso a jabón y agua, un gel desinfectante de manos es una buena alternativa.

  1. Cubrirse al toser y estornudar

Cuando tosa y estornude, hágalo en la parte interior del codo, y enséñeles a los niños lo mismo.  También es importante que todos eviten tocarse la boca, nariz y los ojos.

  1. Desinfectar las superficies que se tocan mucho

Es importante desinfectar aquellas superficies que se tocan comunmente, tales como los teléfonos móviles, las tablets, los controles de los juegos, las manijas o perillas de puertas, los interruptores de luz, las mesas y los mostradores.

  1. Practicar el distanciamiento social

El gobernador de California emitió órdenes para todos los residentes del estado de quedarse en casa, con la excepción de salir a realizar aquellas necesidades esenciales tales como, si su trabajo forma parte de la continuidad de sectores críticos de infraestructura, o cuando sea necesario abastecerse de servicios esenciales como comida, de farmacia, bancos o lavandería, y seguirán en pie hasta nueva orden.  Pulse lo azul para leer más.

Si es absolutamente necesario salir de casa, hágalo usando un cubrebocas y mantenga una distancia de 6 pies con otras personas cuando sea posible.

  1. Seguir las guías relacionadas con los cubrebocas

El Centro de Control y Prevención de Enfermedades (CDC, siglas en inglés) recomienda usar cubiertas de tela para la cara en entornos públicos como tiendas de comestibles y farmacias, en donde las medidas de distanciamiento social puedan ser difíciles de mantener.  Estas cubiertas faciales pueden reducir la propagación de la COVID-19 y ayudar a que la gente que pudiera tener el virus sin saberlo, no lo transmita a otros.

La CDC ofrece guías para usar correctamente las cubiertas faciales, así como también tutorías para fabricar su mascarilla propia.  Ver estos recursos aquí.

No se recomienda el uso público de mascarillas quirúrgicas ni la mascarilla N-95, ya que esos suministros son más necesitados por el personal sanitario, y los socorristas.

  1. Evitar viajes que no sean esenciales

Nosotros recomendamos seguir las guías para viajar de la CDC guidance.

Si alguien en su familia ha viajado recientemente a un área con alta actividad de infecciones de la COVID-19, y muestra síntomas de enfermedad respiratoria, es mejor para usted y su niño, inmune debilitado o no, evitar el contacto con esa persona por lo menos por 14 días.

  1. Mantener suficientes suministros médicos

Asegúrese de tener a la mano suministros médicos necesarios, así como medicamentos recetados, y revise las cantidades de todos los medicamentos para informarle a su proveedor si necesita volver a surtirse.

Get more information on Coronavirus (COVID-19)

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Giving back through volunteering at CHOC: Rosemary’s story

By Rosemary Islava, current CHOC volunteer and mother of former CHOC patient Aliyah

When my daughter Aliyah was fighting cancer, my family spent a lot of time at CHOC Hospital.

Aliyah was diagnosed with a brain tumor at age 2. Before we were transferred to CHOC from a hospital closer to our house, I vaguely knew there was a children’s hospital in Orange, but I had no clue about the miracles and magic that happens within the walls of CHOC.

Throughout Aliyah’s journey, she underwent multiple brain surgeries and rounds of chemotherapy. Our family spent as much time by her side as possible. Aliyah’s siblings practically grew up at CHOC. At one point, Aliyah stayed in the hospital for seven months straight.

Rosemary and Aliyah
Rosemary and Aliyah

Aliyah beat cancer once, and then had to regain her ability to walk, talk, eat, sit, hold her head up—everything. As you can imagine, throughout this journey our family got to know practically everyone at CHOC—doctors, nurses, physical therapists, security guards, cafeteria staff, the sweet staff who cleaned Aliyah’s room, and more. They became like family to us.

Aliyah was always a very determined and caring little girl. Although she was soft-spoken, she was a firecracker. She taught me what true strength was, even though I think it should’ve been the other way around.

After a few years of remission, Aliyah’s cancer returned when she was 9, and she passed away shortly after her 10th birthday. The special way her doctors and nurses cared for her throughout her life didn’t end when she passed away—several of them even spoke at her memorial service.

Caring for others the way CHOC cared for my family

A year after Aliyah passed away, I joined CHOC’s mighty brigade of volunteers. Everyone at CHOC had done whatever they could – for years – to make Aliyah feel like the princess she was. They also made our experience as a family easy and comfortable, and I wanted to pay it forward.

You might assume that volunteering at a hospital is sad. If that were the case, I wouldn’t be here. For me, the opposite is true. Yes, sometimes people get bad news here. But more common that, volunteers and staff get a front-row seat to the resilience CHOC patients display every day.

I was open to serving anywhere the hospital needed me, but I was placed on the oncology unit. During my weekly volunteer shift, I get to serve in all sorts of ways, from helping nurses re-stock supply carts with much-needed supplies, playing board games with patients who need a buddy, or making a cup of coffee for a tired parent. I love assisting families through the discharge process—loading up a red wagon with their belongings and helping them get to their car. I celebrate with them when they can take their child home.

My family was treated so well during our time at CHOC, and it’s a privilege to pay it forward to other families. Whenever I leave CHOC, my heart feels full.

Each week, I proudly put on the traditional blue smock worn by hospital volunteers, along with my CHOC volunteer ID badge. My badge holder includes a photo of Aliyah. Sometimes patients will see Aliyah’s photo and ask about her. Everyone’s journey is different, so I’m careful about what I tell them.

Honoring Aliyah’s memory

My family has found other ways to honor Aliyah’s memory as well. Her birthday was September 19, during Childhood Cancer Awareness Month. Last year to celebrate her birthday – a few months after she passed away—we collected boxes of fun band-aids to support the hematology/oncology unit at CHOC’s band-aid drive. You might think a band-aid is a small gesture, but to a hospitalized child, a band-aid in their favorite color or bearing their favorite character, can be a bright spot.

rosemary_lemonade stand
This year on Aliyah’s birthday, her family held a lemonade stand to raise money for CHOC.

This year for Aliyah’s birthday we held a lemonade stand to raise money for CHOC. We had a great turnout—family members, friends, neighbors, community members, even the fire department showed up! We donated the funds raised to support research efforts by Aliyah’s oncologist, Dr. Ashley Plant.

Making my daughter proud

Throughout Aliyah’s battle with cancer, I felt so grateful for the way her team at CHOC cared for her. That’s why I’m back, volunteering at CHOC—to have a chance to pay it forward to other families and the staff here.

I think the way I am serving other CHOC families would make Aliyah proud.

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