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Facing the large variety of life-limiting conditions in children

Journal title
European journal of pediatrics
Publication year
2019
Author(s)
Hoell, J. I.; Weber, H.; Warfsmann, J.; Trocan, L.; Gagnon, G.; Danneberg, M.; Balzer, S.; Keller, T.; Jan�en, G.; Kuhlen, M.
Pages
1893-1902
Volume
178
Number
12

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

Research abstracts