As parents we are personal advocates for our children with medical staff during treatment.  Here's a reminder that the advocacy must continue during post-treatment care.

As we know, the current treatments for childhood cancers result in numerous, short- and long-term health effects for survivors.   The Childhood Cancer Survivorship Study has found that more than 95% of adult survivors of childhood cancer suffer from a chronic health condition by the age of 45, including pulmonary, hearing, cardiac and other problems related either to their cancer or the cancer treatment.  Data also shows that from 15 to 20% of the 5-year survivors (the "80%") experience what's called excess mortality--they will be killed by childhood cancer or effects of treatments.  

Post-treatment care from doctors that understand these problems is critical to the health and well-being of all childhood cancer survivors.  But are we doing a good job?  New survey data out today presents some disappointing responses from doctors about their experience during post-treatment care of childhood cancer survivors.   The paper, General Internists’ Preferences and Knowledge About the Care of Adu... and this article by The Oncology Report present some key stats:

  • 2 out of 3 doctors surveyed are "uncomfortable" caring for childhood cancer survivors
  • Only 1 in 10 of the doctors professed any knowledge of survivorship guidelines (www.survivorshipguidelines.org)
  • 3 out of 4 doctors never received a summary of treatment history
  • Only 1 in 10 understood that women exposed to chest radiation as children need annual mammography and breast MRI scans. More than 40 percent said they weren’t sure of the guidelines.
  • Just 15 percent knew that childhood chemotherapy patients need an echocardiogram every other year to check for heart problems. More than half said they would not proceed with further echocardiograms, and another 19 percent said they weren’t sure of the guidelines.

The paper concludes improvement in care is a shared responsibility.  More training is need in medical schools and residency.  There is an "urgent need for dissemination of information about late-effects and childhood cancer survivorship".  But, "It would be shortsighted to assert that the internist is solely responsible for long-term follow-up care of CCSs," they said, explaining that pediatric oncology teams should prepare patients for the transition to the adult health care setting by promoting self-management skills and providing information about the diagnosis, treatment exposures, and risk for late effects, and should ensure that patients can advocate for their own care needs throughout their lifetime.  In other words: patient (and parent) self-advocacy. "Patients should be able to say, 'This is what I had, this is what I've been told, this is what I need to follow,'" Dr. Jill Ginsberg, director of the Cancer Survivorship Program at the Children's Hospital of Philadelphia said. "As pediatric oncologists, we must teach our patients how to advocate for themselves."


The best quote we found came from co-author Dr. Tara Henderson, director of the Childhood Cancer Survivors Center at the University of Chicago Medicine Comer Children's Hospital, who in such an honest and telling statement, said:

"We've created this new chronic illness that patients don't even know they have. It's our shared responsibility to know how to care for them better".

We all need to work to the point where the prognosis for 100% of children diagnosed with cancer is to have a chronic but manageable disease: life.

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