An estimated 60% of pediatric oncology patients experience malnutrition during cancer therapy. Initiation of enteral nutrition (EN) and parenteral nutrition (PN) are interventions aimed at maintaining and promoting growth. Limited literature addressing perceptions of nutrition support methods exists. To develop effective guidelines on nutrition education, it is important to understand perceptions regarding nutrition support. The purpose of this pilot study was to describe perceptions of pediatric oncology patients and parents regarding the use of EN and PN and identify influencing variables. A convenience sample of pediatric oncology patients and parents were surveyed at a large Midwestern children's hospital. The majority of those surveyed chose PN over EN if they or their child were unable to eat or maintain their nutritional status. Perceptions may be influenced by comfort, ease of nutrition or medication administration, experience, health care team's recommendation, choice, and image. This study provides health care professionals an initial opportunity to understand perceptions of EN and PN, which may provide a foundation for a multi-institutional study and enhance patient and family education.
One of the most common side effects of medical treatment for patients with an oncologic diagnosis is malnutrition. There is limited research that broadly assesses the perceptions of health care providers (HCPs) regarding nutrition support in the pediatric population. The purpose of this study was to describe the perceptions of nutrition support among pediatric oncology and hematopoietic stem cell transplant HCPs. The study used a cross-sectional descriptive design using a 31-item survey. Results of the survey indicated that nurses were more likely to initiate conversations about nutrition support during the first month of diagnosis, while midlevel providers and physicians initiated discussions in response to a change in nutritional status evidenced by decreased oral intake or weight loss. Participants reported resistance by patients and families more often for enteral nutrition compared with parenteral nutrition. Findings suggest a need to develop a more unified service line-based approach for initiating discussions related to nutrition support that incorporate patient and family perceptions.
CNS involvement in Hemophagocytic Lymphohistiocytosis (HLH) has been reported in 63-73% of children at diagnosis [Haddad et al. (1997); Blood 89: 794-800; Horne et al. (2008); Br J Haematol 140: 327-335]. Patients can present with neurologic symptoms, abnormal CSF cytology, abnormal neuro-imaging, or a combination of these findings. CNS involvement is usually associated with a poor prognosis and increased mortality. The 3 year overall survival is 44% in patients with CNS involvement compared to 67% in patients without CNS involvement at diagnosis [Horne et al. (2008); Br J Haematol 140: 327-335]. We describe a treatment strategy employing systemic dexamethasone to control CNS disease in a patient with familial HLH and persistent CNS disease post Bone Marrow Transplant.
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