6 Attitudes, Souls, and Persons: Children with Severe Neurological Impairment

2020 ◽  
pp. 89-102
Keyword(s):  
Neurological Impairment ◽  
Severe Neurological Impairment

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.

Persistent colonization and genetic diversity of Helicobacter pylori among patients with severe neurological impairment

2006 ◽  
Vol 63 (3) ◽  
pp. 350-352 ◽  
Author(s):  
T. Yamazaki ◽  
M. Inoue ◽  
K. Yamada ◽  
I. Taneike ◽  
T. Yamamoto ◽  
...  
Keyword(s):  
Genetic Diversity ◽  
Helicobacter Pylori ◽  
Neurological Impairment ◽  
Severe Neurological Impairment

An Xq22.1q22.2 nullisomy in a male patient with severe neurological impairment

2017 ◽  
Vol 173 (4) ◽  
pp. 1124-1127 ◽  
Author(s):  
Kentaro Shirai ◽  
Yuya Higashi ◽  
Keiko Shimojima ◽  
Toshiyuki Yamamoto
Keyword(s):  
Male Patient ◽  
Neurological Impairment ◽  
Severe Neurological Impairment

scholarly journals Paroxysmal Autonomic Instability with Dystonia after Pneumococcal Meningoencephalitis

2012 ◽  
Vol 2012 ◽  
pp. 1-4 ◽  
Author(s):  
Layal Safadieh ◽  
Rana Sharara-Chami ◽  
Omar Dabbagh
Keyword(s):  
Traumatic Brain Injury ◽  
Nervous System ◽  
Streptococcus Pneumoniae ◽  
Basal Ganglia ◽  
Bacterial Meningitis ◽  
Neurological Impairment ◽  
Common Cause ◽  
First Case ◽  
Autonomic Instability ◽  
Severe Neurological Impairment

Streptococcus pneumoniaeis a common cause of bacterial meningitis, frequently resulting in severe neurological impairment. A seven-month-old child presenting withStreptococcus pneumoniaemeningoencephalitis developed right basal ganglia and hypothalamic infarctions. Daily episodes of agitation, hypertension, tachycardia, diaphoresis, hyperthermia, and decerebrate posturing were observed. The diagnosis ofparoxysmal autonomic instability with dystoniawas established. The patient responded to clonidine, baclofen, and benzodiazepines. Although this entity has been reported in association with traumatic brain injury, and as a sequel to some nervous system infections, this is the first case, to our knowledge, associated with pneumococcal meningoencephalitis.

Capnography in patients with severe neurological impairment

2014 ◽  
Vol 35 (6) ◽  
pp. 1259-1263 ◽  
Author(s):  
Ron Jacob ◽  
Annette Nelkenbaum ◽  
Joav Merrick ◽  
Riva Brik
Keyword(s):  
Neurological Impairment ◽  
Severe Neurological Impairment
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