- Email: [email protected]
Multidisciplinary care of a child with langerhans cell histiocytosis
Proceedings of the 23nd Annual APON Conference
ing excellent health care to pediatric oncology patients and their families.
Multidisciplinary Care of a Child With Langerhans Cell Histiocytosis Danita Dumas, RN, University of California Davis, S a c r a m e n t o , CA The role of a nurse is to promote patient and family education and coordinate the complex care of children with Langerhans cell histiocytosis (LCH). A multidisciplinary approach toward the care of a child with LCH helps promote and maintain uniform diagnostic evaluation, treatment, and follow-up. LCH affects multiple organ systems resulting in varied clinical manifestations. As a result, children with LCH are often initially referred to a variety of specialists such as orthopedics, neurosurgery, dermatology, or endocrinology for treatment of the initial symptom. However, because LCH is a rare orphan disease of blood cells with an unpredictable course and long-term sequelae, primary management and follow-up should be directed by a pediatric hematology/oncology team with the most experience and knowledge in treating children with LCH. Nurses maintain the link between patients, families, and members of the multidisciplinary team. The goal of this session will be to advance nursing knowledge of the symptoms and presentation of LCH and to enhance awareness of the internationally accepted criteria for diagnostic evaluation of LCH as set by the Histiocyte Society. After completing this session, oncology nurses should be able to recognize patients whose differential diagnosis may include LCH and begin early patient care interventions. A nurse should also be able to communicate and provide written documentation to specialists regarding the appropriate pathologic diagnosis, clinical, laboratory, and radiographic studies. Finally, the nurse will learn about the importance of family support to provide accurate disease education and supportive resources to meet the psychosocial needs of children and their families coping with the diagnosis of LCH. Collaboration with specialists in a multidisci-
103
plinary setting reduces the need for multiple clinic visits and provides a setting where families can adequately discuss concerns and receive answers to their many questions. If all involved work together to provide comprehensive and effective patient and family support, hopefully this orphan disease will not receive orphan care.
Formation of a Central American Pediatric Oncology Nursing Cooperative Group E n f e r m e r a Ana Ruth Bojorquez,* Enf. A. Galindo,1- Enf. R. de la Vega Ruiz,~: Enf. B. Aurayo Miguel,§ Lic. S. Reyes Herrera,¶ J. Chalinor, PhD, RN,** N. D o n a h u e , RN'~; *Hospital de Ninos Benjamin Bloom, San Salvador, El Salvador, ~Hospital San J u a n de Dios, G u a t e m a l a City, Guatemala, ~Hospital Nacional de Ninos, San J o s e , Costa Rica, §Hospital Escuela, Tegucigalpa, Honduras, ¶Hospital Infantil "La Mascota," Managua, Nicaragua, **University of California, San Francisco, CA, 1-1"St. J u d e Children's R e s e a r c h Hospital, Memphis, TN In February 1999, the second meeting of the Asociaci6n de Hemato-Oncologia Pedi~trica de Centro America (AHOPCA) (Central American Pediatric Hemato-Oncology Association) cooperative group was held in Antigua, Guatemala. At this meeting, pediatric oncology nurses from Guatemala, Costa Rica, El Salvador, Honduras, and Nicaragua gathered to form an AHOPCA cooperative nursing group. During the 3-day conference, a mission statement, vision statement, and position paper regarding minimum standards of care for children with cancer were created. In addition, a kardex system for nursing continuity of care was presented by the nurses from E1 Salvador. New AHOPCA cooperative treatment protocols were reviewed for nursing input. This is the first Latin American cooperative nursing group formed to collaborate with physicians in the treatment of children with cancer. A nursing committee chairperson was elected for the next year and plans were outlined for future projects. North American
ing excellent health care to pediatric oncology patients and their families.
Multidisciplinary Care of a Child With Langerhans Cell Histiocytosis Danita Dumas, RN, University of California Davis, S a c r a m e n t o , CA The role of a nurse is to promote patient and family education and coordinate the complex care of children with Langerhans cell histiocytosis (LCH). A multidisciplinary approach toward the care of a child with LCH helps promote and maintain uniform diagnostic evaluation, treatment, and follow-up. LCH affects multiple organ systems resulting in varied clinical manifestations. As a result, children with LCH are often initially referred to a variety of specialists such as orthopedics, neurosurgery, dermatology, or endocrinology for treatment of the initial symptom. However, because LCH is a rare orphan disease of blood cells with an unpredictable course and long-term sequelae, primary management and follow-up should be directed by a pediatric hematology/oncology team with the most experience and knowledge in treating children with LCH. Nurses maintain the link between patients, families, and members of the multidisciplinary team. The goal of this session will be to advance nursing knowledge of the symptoms and presentation of LCH and to enhance awareness of the internationally accepted criteria for diagnostic evaluation of LCH as set by the Histiocyte Society. After completing this session, oncology nurses should be able to recognize patients whose differential diagnosis may include LCH and begin early patient care interventions. A nurse should also be able to communicate and provide written documentation to specialists regarding the appropriate pathologic diagnosis, clinical, laboratory, and radiographic studies. Finally, the nurse will learn about the importance of family support to provide accurate disease education and supportive resources to meet the psychosocial needs of children and their families coping with the diagnosis of LCH. Collaboration with specialists in a multidisci-
103
plinary setting reduces the need for multiple clinic visits and provides a setting where families can adequately discuss concerns and receive answers to their many questions. If all involved work together to provide comprehensive and effective patient and family support, hopefully this orphan disease will not receive orphan care.
Formation of a Central American Pediatric Oncology Nursing Cooperative Group E n f e r m e r a Ana Ruth Bojorquez,* Enf. A. Galindo,1- Enf. R. de la Vega Ruiz,~: Enf. B. Aurayo Miguel,§ Lic. S. Reyes Herrera,¶ J. Chalinor, PhD, RN,** N. D o n a h u e , RN'~; *Hospital de Ninos Benjamin Bloom, San Salvador, El Salvador, ~Hospital San J u a n de Dios, G u a t e m a l a City, Guatemala, ~Hospital Nacional de Ninos, San J o s e , Costa Rica, §Hospital Escuela, Tegucigalpa, Honduras, ¶Hospital Infantil "La Mascota," Managua, Nicaragua, **University of California, San Francisco, CA, 1-1"St. J u d e Children's R e s e a r c h Hospital, Memphis, TN In February 1999, the second meeting of the Asociaci6n de Hemato-Oncologia Pedi~trica de Centro America (AHOPCA) (Central American Pediatric Hemato-Oncology Association) cooperative group was held in Antigua, Guatemala. At this meeting, pediatric oncology nurses from Guatemala, Costa Rica, El Salvador, Honduras, and Nicaragua gathered to form an AHOPCA cooperative nursing group. During the 3-day conference, a mission statement, vision statement, and position paper regarding minimum standards of care for children with cancer were created. In addition, a kardex system for nursing continuity of care was presented by the nurses from E1 Salvador. New AHOPCA cooperative treatment protocols were reviewed for nursing input. This is the first Latin American cooperative nursing group formed to collaborate with physicians in the treatment of children with cancer. A nursing committee chairperson was elected for the next year and plans were outlined for future projects. North American