milehigh

This article was written for The Childhood Brain Tumor Foundation,Germantown, MD 20876

MILE HIGH CHALLENGES IN CCG NURSING
Deborah A. Lafond, MS, RNCS, PNP, Advanced Practice Clinician
Department of Hematology/Oncology - Children’s National Medical Center,
Washington, D.C.

Approximately 360 nurses from around the country attended "Mile High Challenges in CCG Nursing" on May 18-19, 1999 which was held in conjunction with the Children’s Cancer Group (CCG) meeting in Denver, Colorado. The Childhood Brain Tumor Foundation graciously provided an educational grant to help fund the workshop, and nurses from both the Pediatric Oncology Group (POG) and the Children’s Cancer Group (CCG) were able to hear expert speakers from around the country discuss current advances in childhood brain tumor treatment. The workshop encompassed four mini-symposia: Brain Tumors, Medical Economics, Difficult Dilemmas, and Today and Tomorrow.

The Brain Tumor symposium featured innovative surgeries for central nervous system tumors as well as chemotherapeutic, radiation therapy, and peripheral blood stem cell/bone marrow transplant options. Tania Shiminski-Maher, MSN, CPNP, a nurse practitioner with Dr. Fred Epstein at Beth Israel Medical Center in New York, presented new advances in pediatric neuro-surgery which included a video of an actual surgery. This allowed nurses who work in oncology, neurology, or general pediatric units to have a better understanding of what is involved in making the surgical decision, why surgery is always considered as an option, and why pathology makes a difference in the surgical approach and degree of resection. Nurses are now able to prepare families better pre-operatively so that the post-operative course is less traumatic. New advances in surgery including the Gliodel wafer and intra-tumoral chemotherapy were discussed. The conclusions of this talk were: that major technological advances have allowed for more aggressive surgery with less complications, that neuro-surgery is responsible for many advances in the care of childhood brain tumors, and that neuro-surgeons are now incorporated in the Neuro-Oncology team and play a significant part in the decision-making regarding treatment of childhood brain tumors.

One of the leading members of the CCG Nursing Committee, Patsy McGuire Cullen, CPNP, a nurse practitioner from Pediatric Hematology/Oncology Associates of Denver, Colorado, presented "Chemotherapy for Pediatric Brain Tumors: What’s In¼What’s Out". She gave a brief overview of the historical perspective of brain tumor therapy and early CCG brain tumor studies before focusing on the current CCG studies. Most notably the intensity of chemotherapy has dramatically increased over the past three to five years in just about every type of childhood brain tumor treatment with the goal of achieving higher cure rates. For example, treatment of Medulloblastoma, Ependymoma, and High Grade Astrocytomas is now very aggressive and requires peripheral blood stem cell support. The future direction for treatment of brain stem gliomas is to use more radiosensitizers, such as topotecan, carboplatin + RMP-7, and Gadolinium texaphyrin. Ms. McGuire-Cullen reviewed the newest studies and gave tips on nursing interventions to decrease common side effects. As the millennium approaches, the focus is on identification of biological markers to assist with treatment planning, optimizing chemotherapy to improve survival, radiosensitization to improve the outcome for resistant tumors, and intensifying chemotherapy with peripheral blood stem cell (PBSC) support.

A radiation oncologist from New York University Medical Center, Bernadine Donahue, M.D., presented new developments in radiation therapy. Goals of radiation therapy are to improve cure rates, eliminate or reduce radiation where feasible, safely delay radiation in young children, modify radiation techniques and delivery methods, and to improve supportive care. Radiation delivery has improved with newer immobilization devices, which provide greater patient comfort and increased cooperation. General anesthesia is utilized routinely for young children. Radiation techniques including hyperfractionization, radiation implants, 3-dimensional conformal treatment, and the use of radiosurgery have improved outcomes for a wide variety of pediatric central nervous system tumors. (Hyperfractionization refers to treatments that are given twice a day, thus allowing a higher total dose with tolerable toxicity). The efficacy and long term effects of this technique are still unknown. Brachytherapy, or the use of radiation implants, is still limited in pediatrics. While adult studies have shown benefit in gliomas, pediatric trials using brachytherapy are under development. 3-D conformal radiation therapy which uses CT or MRI to locate tumor and normal structures and allow multiple fields shows the area to be treated in three dimensions. Stereotactic radiation or Gamma Knife and radiosurgery uses multiple, precisely aimed beams of radiation that converge at a point which delivers high doses to a small area of tumor and thus spares some of the normal surrounding brain. It is usually given in one treatment. These techniques can only be used in single lesions, less than 4 cm. Improved radiation techniques will hopefully lead to improve cure rates with the least side effects.

Dr. Donahue also discussed late effects of radiation therapy. Radiation therapy works by damaging the DNA. Normal cells can repair their DNA, but tumor cells cannot. Normal cells that are slowly dividing when hit by the radiation are least likely to be able to repair themselves, therefore leading to late effects of treatment. Late effects include learning disabilities, bone loss, hearing loss, eye changes (dry eyes and/or cataracts), low thyroid function, growth delay, and the possibility of second cancers. Improved radiation delivery techniques are being developed to prevent some of these problems, such as pre-radiation chemotherapy to decrease the required radiation field, focused radiation or stereotactic radiation, field adjustment to avoid the auditory (ear) canal, and shielding and immobilization of the eye to minimize scatter to the eyes. The ultimate goal is to improve cure with minimal side effects.

Dr. Judy Villablanca from Children’s of Los Angeles spoke on Peripheral Blood Stem Cell and Bone Marrow Transplant options for brain tumor patients. The goal of this approach to treatment is to increase the cure rate by increasing the intensity of chemotherapy, and in young children to eliminate or postpone radiation therapy. The blood-brain barrier has been a roadblock to many previous chemotherapy regimens, but high dose chemotherapy provides better central nervous system penetration. Side effects of this approach include low blood counts requiring frequent admissions to the hospital, primary gonadal failure, hearing loss, potential for second malignancies, and approximately a 3 to 5% mortality due to therapy related complications. Although not without risk, this type of intensive chemotherapy has been relatively well tolerated and appears to have benefit in aggressive tumors. Current studies are open for Medulloblastomas, PNETs, and high grade Astrocytomas.

The second mini-symposium was on medical economics with an emphasis on brain tumor treatments. Alice Ettinger, RN, MSN, CPNP, from St. Peter’s University Hospital in New Brunswick, NJ, spoke on "Educating the Case Manager." She examined current issues affecting the health care industry and pediatric oncology practice. Methods to improve communications with the insurance company’s case manager were discussed so that clinical trials could be better understood and accepted as the standard of care. The role of the case manager is beneficial to the patients/families as well as the physicians. Both can utilize case management services to better serve the patient. Case management is the optimal way to approach HMO type companies. The discussion included strategies to face the concerns, questions, and issues facing caregivers and payers in the managed care environment.

The Sacramento Region Pediatric Oncology Group representative Kelly James, MSN, RN, presented the preliminary results of a caregiver burden study done through the POG nursing group. She discussed the development of a new tool, "The Care of My Child with Cancer," which attempts to quantify the amount of time spent on caregiving tasks and the amount of effort or difficulty associated with these tasks by primary caregivers (i.e. parents). The results of this study will aid nurses in evaluating new therapies for the potential burden on families as therapy intensifies and help with protocol development. Nurses and physicians must always be mindful of the family’s ability to manage the day to day care at home as they make treatment recommendations.

Cindy Proku, MSN, CPNP from the University of Rochester, NY discussed long term follow-up and survivorship in relation to medical economics. The importance of life long follow-up was stressed. More children are surviving brain tumors as the direct result of new therapies, and these children grow into adulthood, a new set of challenges awaits them such as late effects of treatment. These effects include: learning disabilities, cataracts, heart muscle weakness, hearing loss, liver damage, electrolyte/mineral imbalance, kidney problems, low thyroid function, gonadal failure, and growth delay. Crucially the nurse helps families understand the treatment their child received and the importance of follow-up. The primary care physicians and insurance companies also need to learn about late effects.

The second day of the workshop took on a psychosocial theme. There were two mini-symposia, Difficult Dilemmas and Today and Tomorrow in CCG Nursing. The difficult dilemmas symposium featured Pamela Hinds, Ph.D., a world-renowned expert on the psychosocial issues surrounding the diagnosis and treatment of childhood cancer. Dr. Hinds discussed end of life decision-making by adolescents, parents, and physicians. She identified key factors that are faced when making these decisions. She compared the process among these groups and identified behaviors of health care providers that facilitate or hinder choices made by patients or parents. Dr. Hinds reviewed the results of a study conducted at the St. Jude’s Children’s Research Hospital which included case studies from several institutions. The audience came away with a sense of value in what we provide to the care of childhood cancer patients.

Dr. Eric Kodish, from Rainbow Babies and Children's Hospital in Cleveland, OH, spoke on the ethical dilemmas of putting pediatric patients in clinical trials. Informed consent in both pediatric practice and research were discussed with an emphasis on distinguishing the goals of research from the goals of treatment in the consent process as well as the role of assent with older children. Parents as well as health care workers face ethical issues when patients are entered in to clinical trials, ranging from large multi-center randomized Phase III studies to Phase I investigations of new cancer drugs.

Although designed to protect children from potential risks associated with investigational therapy, mechanisms to protect vulnerable children from research risks may also restrict them from the potential benefits of newer therapies due to limited enrollment. In addition most parents are faced with making informed consent shortly after learning that their child has cancer which may initially compromise their ability to make informed decisions. This leaves them vulnerable and dependent upon the health care system while making important choices.

Chairperson of the CCG Nursing Committee, Kathy Ruccione, RN, MPH, opened the final mini-symposium on Today and Tomorrow in CCG Nursing. Ms. Ruccione presented "Basic Science at the Bedside: Molecular Biology." She discussed the language of molecular biology and current research in cancer, including the Human Genome Project. She discussed how molecular biology relates to cancer including oncogenes, tumor suppressor genes, and DNA repair genes. As we make scientific strides towards the next millennium, medicine is changing to a molecular focus. Genetic testing is currently being done on most brain tumors, either in institutional laboratories or the central CCG reference laboratories. Most institutions send tumor specimens to the central reference laboratory so that data can be collected on a greater number of specimens. With the development of new growth factors, monoclonal antibodies, gene therapy, new genetic medicines, and chemoprevention trials disease treatment is changing which presents a new set of challenges for pediatric oncology nurses, such as updating familial genetic histories, making referrals for genetic testing/counseling when appropriate, and educating families on the genetic implications of diagnosis and treatment.

The Children’s Cancer Group and the Pediatric Oncology Group are merging to form the Children’s Oncology Group (COG) in 2000. The nursing leadership from both groups presented a summary of past accomplishments and discussed future directions for pediatric oncology nursing. Nurses play an important role in the care of childhood cancer patients, from diagnosis to long-term follow-up or end of life decision-making. Through this conference, nurses are better equipped to deliver state of the art nursing care and to educate patients and families. We thank CBTF for its continued support of nursing and the Children’s Cancer Group. We will strive to provide unsurpassed quality care to you and your children whatever the need.