2:55 pm –3:15 pm Saturday, September 17

Primary Caregivers’ Knowledge Attitudes and Beliefs toward Palliative Care for Children with Cancer (235-3)

Parents of children with cancer perform a myriad of caregiving tasks related to Pediatric Palliative Care (PPC) along the illness trajectory. Yet, their knowledge, attitudes and beliefs (KAB) toward PPC remain underexplored, especially in Low and Middle Income Countries (LMICs) where care relies heavily on the family. A better understanding of parent KAB would inform effective strategies to support the integration of PPC into the care of children with cancer and their families.

The purpose of this two-phase multicenter study among primary caregivers of children with cancer in Lebanon was to examine their KAB toward PPC in order to uncover areas for improvement, to determine factors associated with KAB, and identify primary caregivers’ PPC tasks in caring for their children with cancer.

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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 - 5:20 pm Thursday, September 15

Symptom Experience, Self-Efficacy, and Self-Management Behaviors Reported by Adolescents and Young Adults with Cancer (211-1)

Adolescents and young adults (AYAs) with cancer experience co-occurring symptoms both during treatment and into survivorship. Most AYAs are healthy prior to diagnosis and need to learn self-management strategies for their cancer-related symptoms. Self-efficacy is requisite for AYAs to engage successfully in symptom self-management behaviors. Improving AYAs’ self-efficacy for managing symptoms and their use of effective symptom self-management behaviors can promote better outcomes for AYAs along the cancer care continuum.

The specific objectives were to describe the self-reported symptoms, self-efficacy for managing symptoms, and symptom self-management behaviors in a cross-sectional sample of AYAs with cancer.

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4:05 pm – 4:25 pm Thursday, September 15

Parenting Beyond the Veil': Supporting Bereaved Parents as They Continue Their Parenting Relationship After a Child's Death (205-2)

Childhood cancer is the leading cause of illness-related death, leaving thousands of parents to experience bereavement. Parental bereavement is a new state of being, in which parents maintain the parenting relationship in the presence of the child’s absence. While the literature offers insight into continuing bonds, limitations exist related to generalizability and the highly individualized nature of bereavement. There is a need for further exploration to better understand the continuing parenting relationship that is part of the bereavement experience after a child’s death due to cancer.

The aim of this qualitative research study was to describe the lived experience of bereaved parents who experienced the death of a child due to cancer.

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Speaker:
Christine Denhup PHD APRN CPNP-PC

 

CNE Hours
.33
4:25 pm – 4:45 pm Thursday, September 15

Examining Existential Distress in Adolescents with Advanced Cancer (205-3)

The life-threatening nature of advanced cancer has many psychosocial effects on both the patient and the family. Adolescents are mature enough to understand death and to have developed life goals, yet are also experiencing a period of distinct developmental challenges and psychosocial dynamics. As a result, existential distress may be highly significant and uniquely experienced by adolescents with advanced cancer. Existential distress and its impact on symptom management, suffering, and other patient outcomes have not been well-studied in adolescents with cancer.

This purpose of this paper is to analyze the concept of existential distress, highlighting and raising awareness of how existential distress may impact adolescents with advanced cancer and their families

 

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3:45 pm – 4:05 pm Thursday, September 15

Approaches to Facilitate Patient-Reported Outcome Symptom Assessments in Children and Adolescents with Cancer (205-1)

Children and adolescents with cancer suffer with symptoms related to their diagnosis and to cancer-directed therapies; symptoms that are frequently poorly recognized and may be under-treated by clinicians. When symptoms persist or become severe, they can lead to dose-reductions and even premature discontinuation of cancer-directed therapies, which, in turn, can negatively affect treatment efficacy and survivorship. The first step to improving symptom management is to develop a better method for assessing and tracking symptoms. Read more...
4:15 pm – 5:15 pm Friday, September 16

Immune-Mediated Thrombocytopenia: A Clinical Overview (220)

Primary immune thrombocytopenia (ITP) is one of the most common hematologic conditions encountered in pediatric hematology and is a diagnosis of exclusion with no specific testing available to confirm the condition. While fairly consistent and typical in presentation, the astute clinician must be able to differentiate between immune and nonimmune etiologies of thrombocytopenia in order to confirm an accurate diagnosis, etiology, and treatment plan while shielding the patient from unnecessary testing and workup. Read more...
4:15 pm – 5:15 pm Friday, September 16

Can Symptom Scores And Symptom Profiles Be More Clinically Useful? (219)

Symptom science has rapidly evolved over the past two decades, with progression from symptom measurement to sophisticated approaches to analyzing symptom data to illuminate symptom patterns. Cluster and person-specific approaches have been used in pediatric oncology research, but discussion of the clinical value of data generated from these approaches is lacking. Read more...
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
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