Clinic, program help survivors of childhood cancers transition to healthy adults
January 19, 2016 12:00 AM
Noelle Conover, left, coordinator of Children's Hospital of Pittsburgh of UPMC's SurvivorConnect program, and nurse practitioner Amiee Costello, coordinator of Children's Survivorship Clinic, work together to help survivors of childhood cancers wade through issues caused by their cancers and cancer treatments.
By Jill Daly / Pittsburgh Post-Gazette
Second of two parts.
Young people who have survived cancer as children often face special challenges as they mature into adults.
Their needs are a special interest of Jean M. Tersak, director of the cancer survivorship program at Children’s Hospital of Pittsburgh of UPMC. There she leads pediatric hematology/oncology research to bring about cancer cures. At the same time, she sees the need for helping survivors wade through the demands of transitioning from having a pediatrician who is familiar with their cancer treatment to having a family doctor who may not understand their risk of health problems, caused by their cancer as well as their cancer treatment.
“Now there’s a focus on survivorship,” Dr. Tersak said. “We prepare children to transition to adult care, when they’re not in the doctor’s office with their parents. We tell them what they need to know and how to advocate for themselves. Each patient gets their own plan for care, a road map.”
It’s no simple thing: All medical professionals are not aware of survivors’ needs for special care in monitoring their health, according to Tara Henderson, director of the Childhood Cancer Survivors Center at the University of Chicago Medicine. Dr. Henderson was a co-author of a January 2014 study published in Annals of Internal Medicine that found “few internists are comfortable caring for adult childhood cancer survivors,” and they were limited in their knowledge of guidelines on taking care of survivors.
Survivorship care plans should be provided to all cancer survivors, according to a 2006 recommendation from the Institute of Medicine. For example, women who had chest radiation as children should have breast MRI and mammography as frequently as if they had the gene mutation or a family history of breast cancer that put them at high risk of cancer. A recent Annals of Internal Medicine article reported that cardiovascular disease shows up earlier in “substantial numbers” of adult survivors of childhood cancer who were exposed to chemotherapy drugs known to cause heart damage. It called for research into the screening needs of these patients.
Programs at Children’s aim to help the survivors and educate their family doctors.
Dr. Tersak said they are given information about healthy habits — avoiding tobacco, eating a good diet and exercising. “Things that are healthy for all of us are extra important for them.”
She said each survivor should have a primary care provider, and if they don’t, they get help finding one.
The survivorship clinic team keeps in contact with them. The nurse practitioner develops a treatment summary, meets with them, and tries to give them motivation to stay healthy.
Children’s survivorship clinic team, in addition to Dr. Tersak, includes Aimee Costello, clinic coordinator; Jessica Mink, social worker; and Noelle Conover, coordinator of the SurvivorConnect program, which reaches out to cancer survivors between annual visits.
“We now have 530 survivors to keep track of,” said Ms. Conover, who oversees the SurvivorConnect website, www.chp.edu/survivorship; a newsletter; and social and education activities — all offering resource materials and follow-up information for young adult survivors of pediatric cancer. There’s a closed Facebook group for survivors to join.
The only terms of membership are they have to be five years off treatment. The average age is 23½, and most participants were treated as teenagers or preteens, Ms. Conover said.
“Nobody comes through unscathed,” she said. “They were treated with chemo, radiation and surgery …. The reason we want them to be in the survival clinic is not [fear of] recurrence but late effects.” There’s a growing awareness that health conditions related to a patient’s cancer and treatment can show up when they become adults. They have a higher risk for problems, including serious ones, such as another cancer, organ damage and thinking/learning disabilities.
For example, Ms. Conover said, “Most were treated with Adriamycin [generic name: doxorubicin], which affects the heart muscle. A lot of these kids have to have echocardiograms. … To have survived cancer and then be taken down with a heart problem, that would be sad.”
“The other problem is bone density. … We have to tell them, ‘You guys are prematurely aging. You will have problems in your 30s that people in their 50s and 60s have.’ ”
At the clinic, they get personalized treatment they might not find at a family doctor’s, she said.
“We spend 30 minutes in clinic. … We ask them how they’re doing. We’re seeing that they’re not that well adjusted. Most of them are still living with their parents; cognitively some of them aren’t able to go out and do what other young people do. … We want to connect them to a really good primary care practice.”
Ms. Conover agreed that primary care providers don’t always know the latest cancer-survivor care guidelines, so the survivorship team is working to educate both families and doctors through programs, some held at Our Clubhouse in the Strip District, and a pilot project that is exploring transitional shared-doctor’s visits, using telemedicine to include the Children’s doctors with their survivor patients and the new primary care doctor.
“For us, it’s a way to get out to the PCPs and educate them,” she said. “For survivors, they can take us with them. For the PCP, it helps them understand what the survivor is going through.”
She said they are looking for additional grant money to continue the telemedicine project.
Emotional problems are an example of something that might be overlooked by a doctor unfamiliar with cancer survivor care, she said.
“They’re emotionally stuck. They’re not children, but they’re not adults. … They benefit from [behavioral health] counseling. … They also benefit from cognitive testing; a lot of them have learning disabilities, [such as] concentration and attention problems. … If we can get them accommodations, at college, for example, actually they can do very well.”
The young SurvivorConnect participants have a special relationship with each other, Dr. Tersak said: “All of them have been through something others haven’t had experience with.”
Two young people who learned about each other through the newsletter became friends and now travel together, Ms. Conover reported. “One girl said, ‘It’s the first time in my life I can talk to someone and they can get what I’m talking about.”
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