Clinic helps childhood cancer survivors, families deal with many posttreatment challenges
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Advances in the treatment of pediatric cancers have led to an increasing population of childhood cancer survivors, who often face a litany of late effects and comorbidities — as well as long-term psychosocial and financial challenges.
“These medical and health issues, as well as financial and psychosocial issues, really affect the trajectory of these individuals’ lives,” Douglas Fair, MD, MS, FAAP, associate professor in the division of pediatric hematology and oncology at The University of Utah and medical director of Childhood and Adolescent and Young Adult (AYA) Survivorship Program at Intermountain Health’s Primary Children’s Hospital, told Healio. “You can look at the data and it is very stark. It’s very clear that pediatric cancer survivors continue to face these substantial challenges after they complete their therapy.”
To provide continuity of care for survivors of childhood cancers, Fair and his colleagues at Intermountain Health’s Primary Children’s Hospital launched the hospital’s Childhood and AYA Survivorship Program. Founded in 2021, the program serves childhood cancer survivors from the time they complete treatment until they are aged 39 years.
Fair spoke with Healio about the clinic and how it provides ongoing care for survivors of pediatric cancers.
Healio: What are some of the biggest physical, psychosocial and financial challenges facing pediatric cancer survivors?
Fair: Mental health is really coming to the forefront as an issue that has previously gone unaddressed. We are living in a time where the rates of depression and anxiety are skyrocketing in young adults. When you add to that the trauma of being diagnosed with cancer, you have a situation that can truly affect the body, the mind and the psyche.
Then there is the requisite follow-up and ongoing needs of patients. Without a survivorship clinic, who is going to find the solution for these issues?
In our clinic, we have a multipractitioner model. A survivorship nurse coordinator meets with our patients and a survivorship social worker addresses these issues. Every clinic visit will involve seeing these providers and an advanced practice clinician (APC), as well as a physician who is focused on survivorship. We ask about some of these issues in a preclinic questionnaire and address them in person. We have also partnered with resources in the community to provide extra psychological support for patients who need it.
Childhood and AYA cancers are fortunately rare, so there aren’t enough services focused on survivorship. There aren’t providers probing patients to talk about their experiences with pediatric cancer and how it is affecting them now. Our goal is to not only avoid the sequelae of posttraumatic stress, but to encourage posttraumatic growth as much as we can.
Healio: How does your clinic address the financial issues pediatric cancer survivors face?
Fair: Our social worker delves into this with all of our patients, making sure insurance is optimized and in place to cover any subspecialist the patient might need. Here at The University of Utah, we have Anne Kirchhoff, PhD, who is a national leader in publishing and identifying the needs of pediatric cancer survivors. Financial toxicity among cancer survivors is part of the overall situation in the United States, where more than half of patients would not be able to get a thousand dollars of liquidity to their name. Nearly half of all patients who are diagnosed with cancer would describe running out of any personal savings within 2 years. The insurance system in the United States drops off once cancer therapy is over. We’re good at getting our kids on insurance and getting them what they need during cancer therapy, but that support diminishes when they finish treatment.
Financial toxicity is a uniquely American term, and it affects our patients and their families dramatically. So, that’s another thing our clinic targets.
Healio: Outcomes for pediatric cancers have improved significantly in recent years. Is it now time to focus on the quality of survivorship?
Fair: Survival and survivorship are both important issues. In the 1970s, the cure rate for childhood cancer was just north of 50%. Today, it is north of 85%. That is an incredible accomplishment. Yet “cut, poison and burn” is still at the heart of our treatments. Surgery, radiation and chemotherapy are still the mainstays. These treatments leave between 75% and 98% of childhood cancer survivors with some late effects. By late, I mean 20 years after finishing cancer therapy. That might not seem long if you are aged 70 years and diagnosed with cancer, but if you are aged 5 or 10 years, that means you’re having late effects for a very long time.
The main focus of oncology has been to improve cure rates until they reach 100%. However, we need to walk and chew gum at the same time. Survivorship care is the part that, until maybe 15 years ago, was not a focus of oncology at all. Today, we have taken on this responsibility to start creating systems for survivors and their families to support them after they have finished their cancer therapy. That doesn’t mean we do this alone — we work in conjunction with subspecialists and other providers. A survivor’s oncologist is still their oncologist 2 or 3 years after completing therapy.
The field of oncology was not purposely turning a blind eye to survivorship. It just wasn’t in our training to focus on that. Now, though, this whole field is burgeoning, because we’re catching up with the idea that, yes, our job is to cure cancer, but it is also part of our job to help the patient afterward.
For more information:
Douglas Fair, MD, MS, FAAP, can be reached at Primary Children’s Hospital, 100 N. Mario Capecchi Drive, Salt Lake City, UT 84113; email: douglas.fair@hsc.utah.edu.
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