scholarly journals P-24: Outcome of Children with Intestinal Failure (IF) and Severe Neurological Impairment(NI) Treated with Parenteral Nutrition (PN) at Home

2021 ◽  
Vol 105 (7S) ◽  
pp. S60-S60
Author(s):  
Hill S ◽  
Ribeiro-Mourão F ◽  
Bertaud S ◽  
Brierley J ◽  
McCulloch R ◽  
...  
Keyword(s):  
Parenteral Nutrition ◽  
Intestinal Failure ◽  
Neurological Impairment ◽  
Severe Neurological Impairment ◽  
At Home

scholarly journals Managing children and adolescents on parenteral nutrition: challenges for the nutritional support team

2006 ◽  
Vol 65 (3) ◽  
pp. 217-221 ◽  
Author(s):  
Tracey Johnson ◽  
Elaine Sexton
Keyword(s):  
Parenteral Nutrition ◽  
Children And Adolescents ◽  
Nutritional Support ◽  
Intestinal Failure ◽  
Home Care Services ◽  
Cholestatic Liver Disease ◽  
Care Services ◽  
Child Assessments ◽  
The Individual ◽  
At Home

Managing infants, children and adolescents, ranging from premature infants to 18-year-old adolescents, on parenteral nutrition (PN) is a challenge. The ability of children to withstand starvation is limited and, unlike adults, children require nutrition for growth. PN in children is often required secondary to a congenital bowel problem rather than because of an acquired condition. Conditions requiring PN include motility disorders, congenital disorders of the intestinal epithelium and short-bowel syndrome (SBS). Intestinal failure may be temporary and children with SBS may be weaned from PN. However, other children require permanent PN. There are no comprehensive guidelines for the nutritional requirements of children and adolescents requiring PN. Practice in individual centres is based on clinical experience rather than clinical trials. Requirements are assessed on an individual basis according to age, nutritional status and clinical condition. These requirements need regular review to ensure that they remain appropriate for the changing age and weight of the child. Assessments of intakes use different methods, e.g. reference tables and predictive equations. Complications of PN include infection, accidental damage to, or removal of, the line and cholestatic liver disease. Home parenteral nutrition (HPN) is associated with fewer line infections and allows continuation of nutritional support in a more normal environment, encouraging normal development and participation in family activities. However, having a child at home on HPN is associated with physical and psychological stresses. A feeling of depression, loneliness and social isolation is common amongst children and their families. Home-care services are essential to supporting children at home and should be tailored to, and sensitive to, the individual needs of each family.

scholarly journals Parenteral nutrition at home in management of intestinal failure.

BMJ ◽  
1980 ◽  
Vol 280 (6228) ◽  
pp. 1356-1357 ◽  
Author(s):  
P J Milewski ◽  
E Gross ◽  
I Holbrook ◽  
C Clarke ◽  
L A Turnberg ◽  
...  
Keyword(s):  
Parenteral Nutrition ◽  
Intestinal Failure ◽  
At Home

Reversal of Intestinal Failure in Children With Tufting Enteropathy Supported With Parenteral Nutrition at Home

2018 ◽  
Vol 66 (6) ◽  
pp. 967-971 ◽  
Author(s):  
Iona Ashworth ◽  
Alexander Wilson ◽  
Samuel Aquilina ◽  
Raymond Parascandalo ◽  
Victor Mercieca ◽  
...  
Keyword(s):  
Parenteral Nutrition ◽  
Intestinal Failure ◽  
At Home

scholarly journals Etiology and Management of Pediatric Intestinal Failure: Focus on the Non-Digestive Causes

Nutrients ◽  
2021 ◽  
Vol 13 (3) ◽  
pp. 786
Author(s):  
Antonella Diamanti ◽  
Giacomo Calvitti ◽  
Diego Martinelli ◽  
Emma Santariga ◽  
Teresa Capriati ◽  
...  
Keyword(s):  
Parenteral Nutrition ◽  
Intestinal Failure ◽  
Present Review ◽  
Special Focus ◽  
Minimal Amount ◽  
Pathophysiological Mechanisms ◽  
Liver And Pancreas ◽  
Comprehensive Search ◽  
Therapeutic Tools ◽  
Intestinal Pseudo Obstruction

Background: Intestinal failure (IF) is defined as reduction in functioning gut mass below the minimal amount necessary for adequate digestion and absorption. In most cases, IF results from intrinsic diseases of the gastrointestinal tract (digestive IF) (DIF); few cases arise from digestive vascular components, gut annexed (liver and pancreas) and extra-digestive organs or from systemic diseases (non-digestive IF) (NDIF). The present review revised etiology and treatments of DIF and NDIF, with special focus on the pathophysiological mechanisms, whereby NDIF develops. Methods: We performed a comprehensive search of published literature from January 2010 to the present by selecting the following search strings: “intestinal failure” OR “home parenteral nutrition” OR “short bowel syndrome” OR “chronic pseudo-obstruction” OR “chronic intestinal pseudo-obstruction” OR “autoimmune enteropathy” OR “long-term parenteral nutrition”. Results: We collected overall 1656 patients with well-documented etiology of IF: 1419 with DIF (86%) and 237 with NDIF (14%), 55% males and 45% females. Among DIF cases, 66% had SBS and among NDIF cases 90% had malabsorption/maldigestion. Conclusions: The improved availability of diagnostic and therapeutic tools has increased prevalence and life expectancy of rare and severe diseases responsible for IF. The present review greatly expands the spectrum of knowledge on the pathophysiological mechanisms through which the diseases not strictly affecting the intestine can cause IF. In view of the rarity of the majority of pediatric IF diseases, the development of IF Registries is strongly required; in fact, through information flow within the network, the Registries could improve IF knowledge and management.

scholarly journals Opioid-Induced Respiratory Depression in Pediatric Palliative Care Patients with Severe Neurological Impairment—A Scoping Literature Review and Case Reports

Children ◽  
2020 ◽  
Vol 7 (12) ◽  
pp. 312
Author(s):  
Maximilian David Mauritz ◽  
Carola Hasan ◽  
Larissa Alice Dreier ◽  
Pia Schmidt ◽  
Boris Zernikow
Keyword(s):  
Risk Factors ◽  
Palliative Care ◽  
Young Adults ◽  
Scoping Review ◽  
Pediatric Patients ◽  
Case Reports ◽  
Neurological Impairment ◽  
Opioid Therapy ◽  
Pediatric Palliative Care ◽  
Severe Neurological Impairment

Pediatric Palliative Care (PPC) addresses children, adolescents, and young adults with a broad spectrum of underlying diseases. A substantial proportion of these patients have irreversible conditions accompanied by Severe Neurological Impairment (SNI). For the treatment of pain and dyspnea, strong opioids are widely used in PPC. Nonetheless, there is considerable uncertainty regarding the opioid-related side effects in pediatric patients with SNI, particularly concerning Opioid-Induced Respiratory Depression (OIRD). Research on pain and OIRD in pediatric patients with SNI is limited. Using scoping review methodology, we performed a systematic literature search for OIRD in pediatric patients with SNI. Out of n = 521 identified articles, n = 6 studies were included in the review. Most studies examined the effects of short-term intravenous opioid therapy. The incidence of OIRD varied between 0.13% and 4.6%; besides SNI, comorbidities, and polypharmacy were the most relevant risk factors. Additionally, three clinical cases of OIRD in PPC patients receiving oral or transdermal opioids are presented and discussed. The case reports indicate that the risk factors identified in the scoping review also apply to adolescents and young adults with SNI receiving low-dose oral or transdermal opioid therapy. However, the risk of OIRD should never be a barrier to adequate symptom relief. We recommend careful consideration and systematic observation of opioid therapy in this population of patients.

scholarly journals Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairmentis—A multicenter prospective study

2020 ◽  
pp. 026921632097562
Author(s):  
Sophie Pelke ◽  
Julia Wager ◽  
Benedikt B. Claus ◽  
Boris Zernikow ◽  
Mandira Reuther
Keyword(s):  
Palliative Care ◽  
Factor Analysis ◽  
Prospective Study ◽  
Outcome Measure ◽  
Neurological Impairment ◽  
Pediatric Palliative Care ◽  
Confirmatory Factor ◽  
Multicenter Prospective Study ◽  
Family Centered ◽  
Severe Neurological Impairment

Background: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments. Aim: The aim of this study was to develop and validate a family-centered multidimensional outcome measure for pediatric palliative care patients with severe neurological impairment that encompasses the entire unit of care. Design: Based on results of a qualitative study, the questionnaire was developed by consensus-based generation of questions. It was validated in a multicenter prospective study employing exploratory and confirmatory factor analyses as well as reliability and item analyses. Setting: A total of 11 pediatric palliative care teams across Germany aided in the recruitment of study participants. Questionnaires were answered by 149 parents of children with severe neurological impairment and 157 professional caregivers. Results: The exploratory factor analysis of parent data revealed a 6-factor structure of the questionnaire representing: symptoms, the child’s social participation, normalcy, social support, coping with the disease and caregiver’s competencies. This structure was verified by a confirmatory factor analysis of professional caregiver data. Five separate items regarding siblings, partners, and further symptoms not applicable for all patients were added to ensure full multidimensionality. Conclusion: A validated outcome tool for severely neurologically impaired pediatric palliative care patients, the FACETS-OF-PPC, now exists. Due to its concise length and appropriate psychometric properties, it is well suited for clinical application.

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