Facing the large variety of life-limiting conditions in children
Autor: | Thomas Keller, Hannah L. Weber, Jessica I. Hoell, Michaela Kuhlen, Gabriele Gagnon, Laura Trocan, Stefan Balzer, Jens Warfsmann, Mareike Danneberg, G. Janßen |
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Rok vydání: | 2019 |
Předmět: |
Male
Pediatrics medicine.medical_specialty Attitude to Death Palliative care Adolescent Referral Nausea Disease Young Adult 03 medical and health sciences 0302 clinical medicine Germany 030225 pediatrics medicine Humans 030212 general & internal medicine Young adult Child Retrospective Studies Terminal Care business.industry Palliative Care Infant Newborn Infant Syndrome Child Preschool Pediatrics Perinatology and Child Health Female medicine.symptom business Myoclonus Somnolence Cohort study |
Zdroj: | European Journal of Pediatrics. 178:1893-1902 |
ISSN: | 1432-1076 0340-6199 |
Popis: | Life-limiting conditions in children in specialized pediatric palliative care (PPC) are manifold. The "Together for Short Lives" (TfSL) association established four disease categories, which represent the most common illness trajectories. Better understanding the palliative care needs and symptoms of children within these TfSL groups will result in improved anticipation of clinical problems and tailored care. During this retrospective single-center cohort study, 198 children, adolescents, and young adults (CAYAs) were in PPC. Mean age at referral was 8.7 years (range 0.0-25.0), mean duration of care 355 days (range 1-2754). One hundred six (53.5%) CAYAs died during the study period. Sixty-five (32.8%) CAYAs were assigned to TfSL-1, 13 (6.6%) to TfSL-2, 49 (24.7%) to TfSL-3, and 71 (35.9%) to TfSL-4. Home visits were conducted on average every 9.6 days in TfSL-1, 18.9 days in TfSL-2, 31.7 days in TfSL-3, and 31.8 days in TfSL-4 (p value 0.01).Conclusions: Intensity of palliative care significantly differed between the TfSL groups. Neurological and gastrointestinal symptoms were most prominent across all TfSL groups. Symptom cluster analysis showed distinct clusters in TfSL-1 (cluster 1, fatigue/lack of appetite/nausea/somnolence; cluster 2, dyspnea/fear/myoclonus/seizures/spasticity) and TfSL-3/4 (cluster 1, spasticity; cluster 2, all other symptoms).What is Known:• The four TfSL (together for short lives) groups represent the four most common illness trajectories of pediatric palliative care patients.• Better understanding the palliative care needs and symptoms of children within these four TfSL groups will result in improved anticipation of clinical problems and tailored care.What is New:• In our study, TfSL-1 represented the largest individual group of patients, also requiring the most intensive care (defined by the number of visits per days of care).• Symptom cluster analysis revealed distinct symptom clusters in TfSL-1 and TfSL-3/4, which can be used to anticipate clinically common challenges in these patients. |
Databáze: | OpenAIRE |
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