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This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized outpatient pediatric palliative care (SOPPC) team at the Department of Pediatrics and Adolescent Medicine of the Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU). Thirty-one patients with a primary diagnosis of neuropediatric, oncologic, metabolic, and cardiologic categories were included. The indications we identified were spasticity, pain, restlessness, anxiety, loss of appetite, epilepsy, and paresis. Certain aspects of quality of life were improved for 20 of 31 patients (64.5%). For nine patients (29%), no improvement was detected. No conclusions could be drawn for two patients (6.5%). Adverse events were reported for six of the thirty-one patients (19.4%). These were graded as mild, including symptoms such as restlessness, nausea, and behavioral issues. We detected no clinically relevant interactions with other medications. We collected fundamental data on the use of cannabinoids by pediatric palliative patients. Cannabinoids are now frequently administered in pediatric palliative care. They seem to be safe to use and should be considered an add-on therapy for other drug regimens.
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BACKGROUND: In addition to palliative care in the dying phase, the care of sick children and their families is becoming increasingly important in times of crisis of a life-limiting illness. The families are supported by a specialised ambulatory palliative team for children and adolescents (SAPV-team for children and adolescents). The aim of the retrospective survey was to determine the quality of these palliative care crisis interventions for the families. METHODOLOGY: A retrospective questionnaire on medical care and family burden was developed. The "Hospital Anxiety and Depression Scale" was used to measure the burden of the families, and is aimed to assess anxiety and depression symptoms of the relatives. All families who were cared for by the pediatric palliative care team of the Children's and Adolescent Clinic of the University of Erlangen-Nuremberg in the context of crisis interventions between January 2012 and August 2017 received the questionnaire with the request for cooperation. RESULTS: The response rate of the questionnaires was 52,1%. The support and security from the palliative team, the 24-hour on-call service and the support in the organization of medical aids were rated particularly highly. The crisis intervention significantly improved the burden on patients and the family, as well as symptom control and communication. DISCUSSION: The present study demonstrates the tremendous psychological and physical stress with reduced quality of life of both sick children and their families in crisis situations. Specialized outpatient pediatric palliative care is able to help patients and families.
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Intervenção em Crise , Cuidados Paliativos , Adolescente , Criança , Humanos , Qualidade de Vida , Estudos Retrospectivos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Data on the end-of-life phase of children receiving palliative care are limited. The purpose of this study is to investigate the spectrum of symptoms of terminally ill children, adolescents, and young adults, depending on their underlying disease. METHODS: Findings are based on a 4.5-year retrospective study of 89 children who received palliative care before they died, investigating the symptomatology of the last two weeks before death. RESULTS: In this study, the most common clinical symptomatology present in children undergoing end-of-life care includes pain, shortness of breath, anxiety, nausea, and constipation. Out of 89 patients included in this study, 47% suffered from an oncological disease. Oncological patients had a significantly higher symptom burden at the end of life (p < 0.05) compared to other groups, and the intensity of symptoms increased as the underlying disease progressed. The likelihood of experiencing pain and nausea/vomiting was also significantly higher in oncological patients (p = 0.016). CONCLUSIONS: We found that the underlying disease is associated with marked differences in the respective leading clinical symptom. Therefore, related to these differences, symptom management has to be adjusted according to the underlying disease, since the underlying disorder seems to exert an influence on the severity of symptoms and thereby on the modality and choice of treatment. This study is intended to aid underlying disease-specific symptom management at the end-of-life care for children, adolescents, and young adults, with a specific focus on end-of-life care in a home environment.
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Background As part of the 2007 health reform in Germany the structure of outpatient palliative care for children and adolescents was adopted for the first time and then implemented in Erlangen-Nuremberg in 2009. Methods The introduction of Pediatric Palliative Home Care (PPHC) at the Hospital for Children and Adolescents at the University of Erlangen-Nuremberg was retrospectively analyzed between the years 2009 to 2014. Referring medical records (paper-based and electronic) were evaluated systematically. Results Considering 69 patients within this study, 44 (63.8%) died during the investigated period and 61% of these Patients deceased at home. 60 patients (87%) had a written emergency plan, which was jointly developed with patients and particularly their parents and relatives in cooperation with the PPHC team. Over the years and with increasing experience, the number and duration of emergency hospitalization decreased. Even complex therapies, such as patient-controlled analgesia with PCA pump could be implemented on an outpatient basis. Conclusion The descriptive cohort study demonstrates that palliative care for children, despite the medical and structural complexity is possible in an ambulatory setting. It allows a similar, if not better care, compared to inpatient palliative care for children and adolescents, not only for the affected patients, but also for their families.
Assuntos
Serviços Hospitalares de Assistência Domiciliar/organização & administração , Hospitais Urbanos , Cuidados Paliativos/organização & administração , Adolescente , Criança , Pré-Escolar , Feminino , Alemanha , Reforma dos Serviços de Saúde/organização & administração , Implementação de Plano de Saúde/organização & administração , Implementação de Plano de Saúde/estatística & dados numéricos , Serviços Hospitalares de Assistência Domiciliar/estatística & dados numéricos , Hospitais Pediátricos/estatística & dados numéricos , Hospitais Urbanos/estatística & dados numéricos , Humanos , Masculino , Cuidados Paliativos/estatística & dados numéricos , Readmissão do Paciente/estatística & dados numéricos , Análise de SobrevidaRESUMO
The authors describe a young boy with juvenile myelomonocytic leukemia (JMML) who relapsed 45 days after HLA and killer immunoglobulin-like receptor (KIR) mismatched unrelated donor bone marrow transplant (MMUD-BMT) and subsequently developed life-threatening graft-versus-host disease (GvHD). Treatment with 6-mercaptopurine (6-MP) appeared to control severe GvHD and possibly prevented recurrence of leukemic relapse.