Background/objectives: Patients with life-limiting conditions (LLCs) often suffer from restlessness, spasticity, pain, and seizures. Dronabinol (DRB) may have a relieving effect; however, data on the effectiveness of DRB in children with LLCs are limited to outpatients. The aim of this study was to assess the efficacy and safety of DRB.
View Article and Find Full Text PDFChronic pain is common among children and adolescents; however, the diagnoses in the newly developed 11th revision of the International Classification of Diseases (ICD-11) chronic pain chapter are based on adult criteria, overlooking pediatric neurodevelopmental differences. The chronic pain diagnoses have demonstrated good clinical applicability in adults, but to date, no field study has examined these diagnoses to the most specific diagnostic level in a pediatric sample. The current study aimed to explore pediatric representation within the ICD-11, with focus on chronic primary pain.
View Article and Find Full Text PDFObjective: Sleep problems constitute a common and heterogeneous complaint in pediatric palliative care (PPC), where they often contribute to disease morbidity and cause additional distress to children and adolescents and their families already facing the burden of life-threatening and life-limiting conditions. Despite the significant impact of sleep problems, clinical evidence is lacking. The application of general pediatric sleep recommendations appears insufficient to address the unique challenges of the PPC dimension in terms of disease variability, duration, comorbidities, complexity of needs, and particular features of sleep problems related to hospice care.
View Article and Find Full Text PDFIn this study, we describe the development and validation of a revised Pediatric Chronic Pain Grading (P-CPG) for children aged 8 to 17 years that adds emotional impairment to previously used measures of pain intensity and functional impairment. Such a measure enables the assessment of chronic pain severity in different epidemiological and clinical populations, the stratification of treatment according to pain severity, and the monitoring of treatment outcome. The P-CPG was developed using a representative sample of school children with chronic pain (n = 454; M age = 12.
View Article and Find Full Text PDFChildren (Basel)
February 2024
As the Section Editor-in-Chief, it is my pleasure to introduce the new section of dedicated to pediatric pain and palliative care [...
View Article and Find Full Text PDFBackground: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other measures of sleep diagnostics.
Methods: In this monocentric prospective study N = 26 children and adolescents with life-limiting conditions treated on a pediatric palliative care unit were assessed.
Objectives: Chronic pain in children and adolescents (CPCA) is widespread with an increasing prevalence. It is associated with a decreased quality of life and an increased parental work loss. Accordingly, CPCA may pose a substantial economic burden for patients, health care payers, and society.
View Article and Find Full Text PDFEur J Pediatr
March 2024
Children and adolescents with severe neurological impairment (SNI) require specialized care due to their complex medical needs. In particular, these patients are often affected by severe and recurrent lower respiratory tract infections (LRTIs). These infections, including viral and bacterial etiology, pose a significant risk to these patients, often resulting in respiratory insufficiency and long-term impairments.
View Article and Find Full Text PDFPotential contributing factors (PCFs) for irritability of an unknown origin (IUO) in children with neurological conditions are identifiable through structured diagnostics. Uncertainty exists regarding the actual relevance of identified PCFs to IUO. Assessments from parents as well as nursing, psycho-social, and medical professionals were used to determine the contribution of different PCFs in the development and maintenance of IUO.
View Article and Find Full Text PDFBundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz
December 2023
Background: The prevalence of children with life-limiting conditions (LLCs) is rising. It is characteristic for these children to require 24/7 care. In emergencies, families must decide to call the emergency medical service (EMS) or a palliative care team (PCT)-if available.
View Article and Find Full Text PDFBackground: Severely disabling chronic pain affects approximately half a million children in Germany. If there is a lack of response to unimodal treatment, an inpatient interdisciplinary multimodal pain treatment (IMPT) can be considered.
Objective: This review article describes the supply situation of pediatric inpatient IMPT in Germany and presents the current evidence on the effectiveness.
Children and adolescents with complex chronic conditions, including those with life-threatening or life-limiting conditions, are a heterogeneous population. Many individuals exhibit sleep abnormalities that are measurable by proxy questionnaires. No suitable instrument to assess the wide range of different complex chronic conditions is currently available.
View Article and Find Full Text PDFNo validated measure for pain self-efficacy in children and adolescents is currently available in the German language, and existing English versions have limitations. This study used a thorough development process to create the Scale for Pain Self-Efficacy (SPaSE) in both German and English languages. Scale development was based on self-efficacy theory, adapting items from existing self-efficacy measures, and review of patients' perspectives.
View Article and Find Full Text PDFIn children with life-limiting conditions and severe neurological impairment receiving pediatric palliative care (PPC), the degree to which actigraphy generates meaningful sleep data is uncertain. Benchmarked against the gold standard polysomnography (PSG), the applicability of actigraphy in this complex population was to be assessed. An actigraph was placed on N = 8 PPC patients during one-night polysomnography measurement in a pediatric tertiary care hospital's sleep laboratory.
View Article and Find Full Text PDFBackground: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries.
View Article and Find Full Text PDFBackground: For paediatric chronic pain patients, intensive interdisciplinary pain treatment (IIPT) is a well-established treatment. The treatment's short-term effectiveness can be improved by an additive psychosocial aftercare (PAC). However, neither the program's long-term effectiveness nor the patients in particular need have been investigated yet.
View Article and Find Full Text PDFPediatric palliative care (PPC) patients with a severe neurologic impairment (SNI) suffer considerable morbidity and increased mortality from lower respiratory tract infections (LRTIs). The indication and choice of antibiotic therapy for bacterial LRTIs are often challenging given the lack of evidence-based treatment recommendations for this vulnerable patient population. We conducted an observational study before the SARS-CoV-2 pandemic in an eight-bed pediatric palliative care inpatient unit.
View Article and Find Full Text PDF"What is the big deal about back pain in children and adolescents? Doesn't it just go away if you give it time and rest?" [...
View Article and Find Full Text PDFContext: In pediatric palliative care, irritability of unknown origin (IUO) in children with severe neurological impairment is a peculiarly complex and challenging symptom, yet its etiology remains poorly understood.
Objectives: Presenting a structured IUO diagnostic and therapeutic approach developed in a specialized inpatient pediatric palliative care facility for identifying IUO's potential contributing factors (PCFs).
Methods: Prospective observational study with N = 22 children showing IUO at admission to the inpatient pediatric palliative care facility.
Aim: Multidrug-resistant organisms (MDRO) deserve special attention in health-care facilities for children with life-limiting conditions because these children have an increased risk for colonisation. To avoid nosocomial transmissions to other inpatients, single-room isolation is usually recommended. In the context of paediatric palliative care (PPC), such isolation counters the aim of participation in social activities for the patients.
View Article and Find Full Text PDFBackground: Paediatric palliative care (PPC) is a noncurative approach to the care of children and adolescents with life-limiting and life-threatening illnesses. Electronic medical records (EMRs) play an important role in documenting such complex processes. Despite their benefits, they can introduce unintended consequences if future users are not involved in their development.
View Article and Find Full Text PDFFourteen months after the implantation of a ventriculoperitoneal shunt catheter, a six-year-old boy developed recurrent, severe headaches and vomiting every three weeks. The attacks were of such severity that hospitalizations for analgesic and antiemetic therapies and intravenous rehydration and electrolyte substitution were repeatedly required. The patient was asymptomatic between the attacks.
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