10:15 am – 10:45 am Friday, September 16

HSCT for MPS disorders (Hunters and Hurlers), (217-2)

Hematopoietic Stem Cell Transplant (HSCT) is best known as a treatment modality for hematologic malignancies, some solid tumors, and various autoimmune disorders. It is lesser known as a means to halt progressive symptoms in certain chromosomal inherited disorders such as Hunters and Hurlers disease. Patients with Hunters and Hurlers are born with an inherited x-linked chromosomal disease where sugar molecules are unable to be broken down and digested by the body causing both physical and mental disabilities. There is no cure for these diseases but HSCT is an intensive therapy that has shown promise with these diagnoses, helping to stop progression of symptoms of disease.

Two case studies of children who underwent HSCT at our center, one for Hunter’s and one for Hurler’s, will be presented from both a medical and psychosocial standpoint. How these children first presented, how HSCT affect their disease, the complications they underwent during their HSCT, and the complex psychosocial aspects of receiving chemotherapy as well as an extended hospitalization.

Learning Objectives:

  • The learner will describe the role of Hematopoietic Stem Cell Transplant in the treatment of non-malignant diseases.
  • Identify conditioning regimens and their unique complications for non – malignant diseases.
  • The learner will describe the psychosocial needs of hematopoietic transplant patients and their families when they undergo a complex regiment such as HSCT.
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5:00 pm – 6:00 pm Thursday, September 15

Toward a Cure for Sickle Cell Disease: Exploring Gene Therapy (210)

Sickle cell disease (SCD) is the most common inherited blood disorder worldwide. It is estimated that 300,000 babies are born with SCD every year and it occurs largely in descendants of Sub Saharan Africa. SCD is caused by a specific mutation in the beta globin gene that results in sickle hemoglobin production. Sickle hemoglobin polymerization leads to red blood cell sickling, chronic hemolysis and vaso - occlusion. Patients with SCD experience significant pain crisis and end organ damage that leads to a decreased lifespan with a median life expectancy in the United States of 43 years. At this time, the only known cure for SCD is hematopoietic stem cell transplantation (HSCT) most often with matched sibling donors. Read more...
5:00 pm – 5:30 pm Thursday, September 15

The Role of the Pediatric Clinical Research Nurse in the Management of Severe Aplastic Anemia (208-1)

Severe aplastic anemia (SAA) is a serious and life-threatening condition with an unknown etiology, involving improper production of stem cells due to damaged bone marrow. Without functional stem cells, the body is depleted of red blood cells, white blood cells, and/or platelets. With only 600 to 900 cases diagnosed each year in the U.S. alone, SAA is rare. Most patients are only provided supportive care measures: receiving blood transfusions to manage symptoms and adhere to complex medication regimens to limit complications; however, advancements in treatment of SAA are made possible through clinical research trials. The Clinical Research Nurse (CRN) must address the clinical needs of the research patient, but also be sensitive to the psychosocial and ethical issues of supporting pediatric research patients. This case study presents a 7-year old Mongolian patient, “M.B.”, with refractory SAA, who failed standard immunosuppressive therapy and failed to engraft from a previous expanded umbilical cord stem cell transplant. M.B. was enrolled in a clinical research protocol in which he underwent a haplo-identical transplantation using peripheral blood stem cells and post-transplant GVHD prophylaxis using Cyclophosphamide. M.B.’s complex clinical trajectory will unfold over the course of the case study, with the role of the Clinical Research Nurse highlighted. In addition to clinical complications, the COVID-19 pandemic added an additional layer of psychosocial and ethical complexities for M.B. and his family to navigate. Application of the Clinical Research Nurse Domain of Practice ensures that the bedside nurse addresses the holistic needs of the research patient and caregiver at the bedside, while also maintaining the integrity of the research protocol. Read more...
Speaker:
Alejandra Castillo MSN RN
CNE Hours
.50
5:00 pm – 5:30 pm Thursday, September 15

Prior Authorization: Where was that in Nursing School? (207-1)

The world of healthcare has been dominated by discussion about COVID-19 over the past 2 years. At the same time, the field of pediatric hematology-oncology has continued to move forward with new therapies which offer hope for enhanced outcomes, specifically in the field of precision medicine. The topic that is not often recognized in those discussions is the growing complexity of payment for these therapies, as well as therapies that have been considered “standard” for many years. Nurses may be seeing increased requirement to participate in discussions about the cost or prior authorization of medications for their patients. In addition to these requirements, third party payors have growing expectations for prior authorization. At the same time, there are more third-party payor options on the market for families to choose, and unfortunately, some families are choosing plans that may not provide adequate coverage. The political climate has changed, as well, and the individual mandate for coverage, which was originally a part of the Affordable Care Act, was rescinded. New legislation has now created the No Surprises Act, which requires up-front estimate of the cost of care for specific situations. There was a time when care was scheduled as expected, and there was no need to worry about prior authorization, but in today’s world, nurses are likely hearing more and more about the status or need for “approval” of care in advance. This session will provide an overview of what pediatric hematology-oncology nurses may be experiencing as a part of daily operations in the care of these patients and families. An evolving model of multidisciplinary involvement to assure timely care in the face of growing third party payor expectations will be shared. Read more...
5:30 pm – 6:00 pm Thursday, September 15

Onco-Critical Care 101 (209-2)

Pediatric Oncology nurses are frequently exposed to patients with oncologic emergencies and who become critically ill requiring transfer to the PICU. They are familiar with conditions requiring transfer but happens to these patients while they are in the PICU? When the patient is transferred back to the regular oncology floor or presents back in clinic, it is helpful for the nurse to know what happened to their patient in the PICU. Common oncology critical care interventions such as CRRT, vasopressors, respiratory support, ect are largely unfamiliar to oncology nurses but can be helpful to understand for post PICU care and in situations where care must be initiated by the nurse on the floor. This presentation will cover the basics of Oncology Critical Care including recognizing oncologic emergencies that should trigger transfer to PICU and how these conditions are treated once the patient is in the PICU. Read more...
Speaker:
Katie Gardner MSN APRN CPNP-AC
CNE Hours
.50
3:45 pm – 4:45 pm Thursday, September 15

CBD, THC, GVH, MMJ: Practical Ways to Make Sense of the Alphabet Soup (203)

Many pediatric oncology patients report medical marijuana (MMJ) and hemp-based CBD use. Hemp is now federally legal under the Farm Bill since December 2018 and hemp-based cannabinoid products are widely available. Research focused on cannabis and its’ use in oncology, hematology, and bone marrow transplant is continuing to grow. A study in Israel looks at adding cannabis to the treatment of graft versus host disease following bone marrow transplant. Read more...
8:30 am – 9:30 am Friday, September 16

General Session: State of Nursing: Pediatric Hematopoietic Stem Cell Transplantation: A Glimpse of the Past, Current State, a Glance of the Future (102)

Over the last 60 years, significant advances in in hematopoietic stem cell transplantation (HSCT) has provided improvements in effective treatment or cure and overall survival for many patients. There has been considerable HSCT progress and success in a variety of pediatric malignant and non-malignant diseases. This state of the science presentation will be providing the evolution and current and future highlights of Pediatric HSCT as it relates to disease conditions, stem cell sources, conditioning regimens, cellular immunotherapy, toxicity related treatments and supportive care. Read more...
3:00 pm – 4:00 pm Friday, September 16

General Session: Sickle Cell Disease: Pathophysiology, Pain, and Prevention of Problems (103)

Sickle Cell Disease (SCD) is the most common inherited hemoglobinopathy in the United States; the etiology is a DNA mutation that results in the different amino acids at position 6 of the beta-globin chain, where valine is produced instead of glutamine. The sickling of the red blood cell sets off a cascade of pathology. Vaso occlusion causing ischemia to almost every body system accounts for the majority of morbidity and is the etiology of acute pain episodes. Acute pain episodes account for the majority of health care utilization by this population.

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10:30 am – 11:30 am Saturday, September 17

Nutritional Support: Best Practices for Pediatric Blood and Marrow Transplant Patients (226)

Nutrition is vital for children to grow and thrive. This is especially important in children with conditions requiring blood and marrow transplantation (BMT) who receive prolonged, intensive therapy requiring optimal overall health and nutritional status (Baumgartner, 2017). Chemotherapy is associated with nausea, vomiting, diarrhea, poor appetite, taste changes, mucositis, and increased catabolic demands (McMillen et al., 2020). Malnutrition rates in the pediatric oncology/BMT population range from 6 to 50% (McMillen et al, 2020), and this can have significant consequences. Read more...
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