On a weekend trip home to see her family, a 10-year-old cancer patient contracted COVID-19. The little girl was undergoing proton therapy at Mayo Clinic for a brain tumor, and while not terribly sick, her doctors made the decision to halt treatment temporarily until she tested negative.

“Our infectious disease team did not feel comfortable bringing her to the clinic area while she just had the new infection,” her radiation oncologist Dr. Anita Mahajan told HCB News. “After a few days, we had to bring her back and make sure she was negative. It did interrupt her treatment a bit, but fortunately did not affect her final outcome.”

As the pandemic continues, decisions like this have become a fact of life across patient populations. This can be tough for cancer patients, as some cancers may be too progressive to stop treatment. The situation is even more complex for child cancer patients who have additional needs that the pandemic has only exacerbated. In addition, the safety of other patients and staff must be considered.

Mahajan says her institution has a plan in place for when treatment cannot be put off. “For patients [to whom] we cannot introduce a break, we then use the appropriate PPE, make sure the treatment is safe for them and that the room is safe for patients afterward. Since it’s a shared service, we delay their treatment to the end of the day and make sure the room is ready and cleaned for the next day. It was initially very disruptive and created a lot of anxiety, but we manage and we have developed protocols to keep everyone safe.”

Balancing COVID and proton therapy
Like Mayo, all proton facilities have protocols to protect patients and staff during the pandemic. At Cincinnati Children’s Proton Therapy Center, pediatric patients that require sedation for proton therapy must take a COVID test every 96 hours throughout their course of treatment. Those who do not require anesthesia are tested every 28 days, and any who are symptomatic will be tested and placed in isolation until results are confirmed.

But even if a child tests positive for COVID, the institution will not turn them away, says Mary Beth Morgan, RN coordinator for the Cincinnati Children’s Proton Therapy Center. “Proton therapy is not considered an elective procedure. We work with anesthesia, medical and radiation Oncology teams to coordinate needed radiation treatment, as long as the patient is clinically stable. We also alert the infectious disease team, so charts can be flagged for COVID infection, and work with registration staff to ensure patients are taken back to a room, and not sitting in our lobby with other families, to decrease COVID exposure.”

Nursing staff are also kept informed and updated daily. All care teams working with the child will have the chance to evaluate them, especially anesthesiologists who must be able to determine if a child who needs anesthesia can be safely sedated and treated. “If they need anesthesia, we will provide it as long as it’s safe to treat them. The anesthesiologist, myself and the oncologist all evaluate the patient,” said Danielle Fohl, a nurse practitioner for Cincinnati Children’s Proton Center.

Should anesthesia not be safe to perform, alternative options are available. Cincinnati Children’s Proton Therapy Center is currently enrolled in an avatar study that allows a patient, who is on the cusp of possibly needing anesthesia for daily treatment, to watch a movie with the use of goggles, while wearing a mask for treatment.

Despite these innovations, the pandemic has made some proton therapy facilities hesitant to take patients from out-of-town. This can be frustrating for pediatric patients, who are already limited in the number of facilities designed to care for their specific needs, according to Dr. Victor Mangona, a radiation oncologist and physician at the Texas Center for Proton Therapy in Irving, Texas. “Different institutions have taken or not taken distant patients from out of town as much. So we’ve actually seen in some instances an increase, because some hospitals weren’t taking patients from out of town during the pandemic.”

Finding the right facilities with the right personnel
In addition to COVID, pediatric patients face obstacles that predate the pandemic, primarily having to travel long distances for treatment, according to Dr. Danny Indelicato, a professor in the department of radiation oncology at the University of Florida. “Many of the existing facilities are not affiliated with large children’s hospitals or academic medical centers. The nature of pediatric cancer dictates specialized, multidisciplinary care that goes beyond the proton therapy facility itself.”

Long treks to facilities and in many cases, relocation, are hard not just on children but on their families as well. Work and school commitments and lodging costs may make such options impossible, and parents may have other children to care for. Relocating also means having to switch care teams and transfer current treatment regimes. The logistics for facilitating these changes can often be complex.

Additionally, children require specifically trained personnel, including pediatric nurses and oncologists, social workers, child life specialists and therapists and very importantly, pediatric anesthesiologists. And whereas the majority of proton therapy centers are single-room facilities, children require multiroom facilities to best handle their needs.

“Single room facilities are not likely to have the pediatric infrastructure, including pediatric nursing and social workers needed to handle these cases. In addition they are not likely to have the pediatric anesthesia and associated recovery team needed for treating children under 5-6 years of age,” said Stuart Klein, executive director of the UF Health Proton Therapy Institute.

As a result, the emotional, psychological and financial tolls can be much for young patients and their families. To help, proton therapy centers often employ social workers who can work with families to arrange affordable lodging, as well as transport to the facility. They can also suggest activities for them to do around town.

“If they are coming from one of the local hospitals, they often already have social work support from those facilities,” said Mangona, whose facility primarily serves patients in North Texas. “We do have kids coming from West Texas who are not already plugged into hospitals here. For them, we have a patient services coordinator who helps coordinate lodging, such as with Ronald McDonald House. We also have relationships with hotels and other extended state facilities for children and their families to help accommodate them for treatment.”

He adds that while proton therapy is almost universally approved for pediatric patients, referral and prior authorization processes take time and can often delay desired starting dates for treatment. “We have to wait for a fax or mail. There’s not really a phone number to call to expedite things when they need to be sped up. We can be waiting weeks.”

What more we need to do
Despite the tremendous benefits of proton therapy, the treatment is not “magic,” according to Dr. Anita Mahajan. She says more needs to be done to relay its advantages and limitations to not just the public but members in the larger field of radiation oncology all together, especially where children are involved. “There are still side effects and there has to be good communication between the radiation oncologist and the referring oncologists and the surgeons to understand exactly how the radiotherapy will fit in with the surgery, chemotherapy and other treatments that are required.”

Indelicato says that for children, expanding access to treatment requires not more technology but more personnel trained to facilitate their unique needs. “It’s the resources surrounding the technology, specifically the subspecialized doctors, including the pediatric radiation oncologist, the anesthesiologist, the chemotherapy teams, the surgeons, the physical therapists, the pediatric recovering rooms, personnel bump, social workers and support on set.”

Danielle Fohl says that all care teams must be consulted and work together to come up with an effective game plan for treating children. “The pediatric proton center is working with the pediatric oncology team that can also actively treat the cancer the patients have and the pediatric anesthesiologists to make sure those needs are being met. Child life specialists help children cope with treatment and families cope with treatment, and understand what’s going on.”

It is also important to understand that children require more time in their care. As a result, compared to adults, fewer children can be treated each day. Mangona says this is the reason why more multiroom facilities with the right personnel and resources are needed in pediatric proton therapy. “It’s not uncommon for pediatric patients with anesthesia to be in the room for 45 minutes to an hour. At our facility we have three treatment rooms, so we are not as constrained, although we still have limits on how many patients and how many hours we can treat in a day. You’re going to see variability from institution to institution in their capacity to treat pediatric patients, especially when you look at treating pediatric patients with anesthesia.”

Another factor to consider is the emotional and financial toll of traveling long distances and relocating, says Klein. “It certainly is an economic hardship as well as a psychological hardship when moving away from a family's home-based support systems. It really is an economic as well as a social issue for these families.”

The pandemic has only exacerbated these challenges, and facilities must have appropriate plans in place to address different scenarios, from testing for COVID status, to managing patients that are positive, to anesthesia needs, to taking into account patient and staff safety. In any case, all possible options must be evaluated to ensure patients receive the treatment they desperately need, says Mary Beth Morgan. “As long as patients are clinically stable to be treated, we will treat them.”