Survivorship Clinic

Recently Launched Survivorship Clinic Flourishing at Children's

In June 2019, Melissa Acquazzino, MD, oversaw the launch of a multidisciplinary Survivorship Clinic to serve Children’s patients after they have undergone successful treatment for pediatric cancers. One key reason Dr. Acquazzino chose to become a pediatric oncologist is for the opportunity to accompany patients and families through their illness and into the stages of life that come after recovery. “You get to take care of them in times of illness, but then also follow them beyond that until you hand them off to adulthood.” Perhaps nothing embodies the concept of “beyond” better than the Survivorship Clinic.

Dr. Acquazzino explains, “For our survivors of childhood cancer, as we transition from coming off treatment and managing those toxicities and worrying about relapse, we reach the point where we’re really focused on planning ahead for future health. In the Survivorship Clinic, we focus on how to maintain and promote life-long health, knowing that these kids were exposed to toxic treatments, sometimes at a very young age.”

National guidelines call for screening survivors for conditions of special concern, based on the type and duration of all therapies they have received. As one example, offered by Dr. Acquazzino, “We know that certain chemotherapy agents predispose children to cardiac disease down the road. So we have guidelines, based on what treatment a patient received, for how often they should be getting echocardiograms.” Per the guidelines, a child or adolescent cancer survivor often has a long list of specialists to see annually. Attending all of these appointments normally means multiple clinic visits, long wait times for appointments and repeated school/work absence for the patients and their families. As adolescent patients grow closer to adulthood, they need help making a smooth transition to adult survivor care. The Survivorship Clinic was designed to simplify challenges like these.

The program gathers core providers for half-day clinic sessions devoted to delivering each patient coordinated screening and counseling services from all specialists in one visit to Children’s. The team of providers is headed by Dr. Acquazzino, oncologist for the majority of patients, and Sachit Patel, MD, who oversees care of children who received bone marrow transplants as part of their cancer treatment. Other specialties represented on the team include social work, behavioral health, physical therapy and cardiology. Nurse Case Manager Cassie Adams, BSN., RN, C.P.H.O.N., coordinates the scheduling and the educational component, and ensures that each patient and family receive any necessary follow-up after the visit. “Cassie keeps us going where we need to go,” says Dr. Acquazzino, “because our goal is to get the patient in and out of the clinicin two hours or less. If they need imaging or labs, it’s all done in the same day. Some of that requires advance planning, so there’s a lot of prep work that goes into it to make it seamless for the family.”

One session of the Survivorship Clinic is designed to serve at least six patients in this manner. Patients would typically first attend a Survivorship Clinic two to three years following successful therapy, and then return annually until around age 21. “As we see them year to year we’re working on transitioning them out of our clinic someday as an adult,” comments Dr. Acquazzino. “So we’re working with the patient to help them learn to be responsible for their own medical care instead of the parents. Ultimately, we help them figure out where they’re going to get the remainder of their care, because many of the toxicities from treatment don’t happen until adulthood. The screening recommendations are equally, if not more, important as they transition from us, so we help them pick a good provider, whether that’s our Survivorship Clinic at UNMC or sometimes a provider closer to  home. We make sure that provider has all of the information they need to successfully take over care of this patient.”

One objective for the future is to develop a research program that allows providers and patients to participate in generating knowledge about risk factors for pediatric cancer survivors and ways to maximize their overall health. Dr. Acquazzino explains, “We have plans to think about how to improve outcomes in our patients, whether that’s focused on a specific disease process like bone health or cardiac, or it’s from the standpoint of systems processes like patient education. So for example, when we’re thinking of bone health, we think activity makes a difference, but how, and what type of activities? In terms of cardiac health, one of the challenging things about studying that in our survivors is that many of the negative late effects happen in adulthood. So we’re trying to think of novel, early signs or predictors” that could guide a personally-tailored care plan.

Generous support for the program has come from philanthropies such as the Brian Duensing Foundation, Lolo’s Angels and the David Spence Cancer Foundation. One way philanthropic gifts help is by ensuring access to behavioral health services during the Survivorship Clinic visit and for follow-up care if needed, regardless of their insurance status or ability to pay. This September, Pediatric Cancer Awareness Month, philanthropic gifts will also support Children’s inaugural celebration of pediatric cancer survivors. Programming for this celebration will include an educational component – highlighted by a visiting survivorship expert who will speak at Grand Rounds and address an educational session for families – as well as a celebratory social event.  

by Matthew Sandbulte, CHRI Grant & Scientific Writer | February 11, 2020