Children's SVP writes about Progress and Challenges in Brain Tumor Research June 25, 2014

Roger J. Packer, MD, Senior Vice President at Children’s National, Writes Progress and Challenges in Brain Tumor Research

Washington, DC -  New biologic understanding of medulloblastoma, a highly malignant brain tumor, may lead to “radically altered therapy” and reduced neurotoxicity for young patients,  Roger J. Packer, MD, Senior VP at Children’s National Health System’s Center for Neuroscience and Behavioral Medicine writes in a commentary in the July issue of  Pediatric Blood & Cancer.  Packer is also director of Children’s National’s Gilbert Neurofibromatosis Institute and the Brain Tumor Institute.

While survival rates have been improved, there have been significant issues involving quality of life for patients and their families, Dr. Packer writes, noting that “medulloblastoma in infancy and childhood remains a challenging and increasingly complex disease to treat.”

In terms of survival, “it has been a relative success story, the best encountered in pediatric brain tumors,” Dr. Packer adds. The survival rates for some subsets of patients range between 90 and 100% at five years, he says, with “the majority of 5-year survivals being cured of their disease, yet in “the perspective of quality of life, treatment remains suboptimal with many survivors having devastating cognitive, psychosocial, and neurological treatment-related sequlae (the after-effect of a disease).”

A collision of survival and quality of life is reflected in patients undergoing radiotherapy and chemotherapy, which has resulted in survival rates as high as 75% to 80%, “with the price that most who are less than 10 years of age at diagnosis will have significant neurocognitive sequale and may not be able to be fully competitive in life in the future,” Dr. Packer writes.  Such outcomes result in “attempts to radically alter therapy, even to the degree of completely deleting radiotherapy.”

There also may be the “enticing possibility that molecular targeted therapy in the near future may result in not only more effective therapy as regards to disease control,” Dr. Packer states, “ but also allow a reduction in neurotoxic therapy for some subgroups of patients with specific molecular subtypes.”

Dr. Packer commented on a study published in the same issue that focused on quality of life and survival issues in care for patients, and parents’ perspective.  The study, written by the Providence Health Care Research Institute in Vancouver, Canada, said “there may be trade-offs between quality of life and survival.”  The study asked parents and clinicians their opinions about “these trade-offs.”

Dr. Packer wrote that the study failed to include common scenarios about what families and caregivers may face in confronting the illnesses, or the tremendous challenges they face.

“The real world scenarios may be that the families are going to be increasingly asked in the years ahead if they would accept the risk of a poorer prognosis with a better possible level of functional outcome, a scenario not described (in the study),” Dr. Packer stated.

“Physicians must assume responsibility in the face of difficult counseling decisions to help families,” Dr. Packer said.“They want someone to tell them what to do and at the same time want to feel in control of their child’s care,” Dr. Packer wrote. “Just letting the family decide, in some ways, seems a real abdication of physician responsibility.”

 “Anyone who has taken care of a child with medulloblastoma knows how difficult it is to discuss, especially with an overwhelmed family, at times the seemingly mutual exclusive concepts of survival and maximizing neurocognitive neuropsychology and quality of life,” Dr. Packer writes. “As a caregiver, those types of discussions are never fully satisfying.”

Despite his critique, Dr. Packer emphasized, “these considerations are in no way to belittle the contribution” of the authors of the Canadian study. “It opens and focuses an extremely important dialogue that needs to be undertaken by parents and providers for infants and young children with medulloblastomas,” Dr. Packer wrote. “The future of medulloblastoma management, given the new biologic insights of these diseases, is extremely exciting and at the same time raises tremendous challenges.”

Contact: Emily Hartman or Joe Cantlupe at 202-476-4500.

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About Children’s National Health System
Children’s National Health System, based in Washington, DC, has been serving the nation’s children since 1870. Children’s National’s hospital is Magnet® designated, and is consistently ranked among the top pediatric hospitals by U.S. News & World Report. Home to the Children’s Research Institute and the Sheikh Zayed Institute for Pediatric Surgical Innovation, Children’s National is one of the nation’s top NIH-funded pediatric institutions. With a community-based pediatric network, eight regional outpatient centers, an ambulatory surgery center, two emergency rooms, an acute care hospital, and collaborations throughout the region, Children’s National is recognized for its expertise and innovation in pediatric care and as an advocate for all children. For more information, visit ChildrensNational.org, or follow us on Facebook and Twitter.

 

 

 

 

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