1 40 3 Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month December 2016 List Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Experiences In Palliative Home Care Of Infants With Life-limiting Conditions. Publisher An entity responsible for making the resource available European Journal Of Pediatrics Date A point or period of time associated with an event in the lifecycle of the resource 2015 Subject The topic of the resource Caregivers; Female; Germany; Home Care Services/statistics & Numerical Data; Hospitals Pediatric; Humans; Infant; Infant Mortality; Infant Newborn; Male; Palliative Care/statistics & Numerical Data; Patient Comfort/statistics & Numerical Data; Terminal Care/statistics & Numerical Data Home Care; Infants; Life-limiting Conditions; Neonates; Palliative Care Creator An entity primarily responsible for making the resource Kuhlen M; Höll J; Sabir H; Borkhardt A; Jansen G Description An account of the resource Abstract The aim of this study was to determine the distinct issues neonates/infants with life-limiting conditions and their families face during palliative home care and to enable physicians/caregivers to carefully address their needs. Data on home-based palliative care of all neonates and infants, who were being taken care of by our paediatric palliative care team between 2007 and 2014, was analysed. A total of 31 patients (pts) were analysed. The majority of patients (n = 17) were diagnosed with congenital malformations or chromosomal abnormalities. Twenty pts died, five of them in hospital. A high percentage of pts presented with swallowing incoordination (83.9%) and was fed either by nasogastric tube or percutaneous endoscopic gastrostomy. Of the pts, 71.0% were treated with analgesics, 45.2% were oxygen dependent, and 9.7% required mechanical ventilation. Highest mortality was seen in pts with perinatal complications (75%). In four (12.9%) pts, palliative home care could come to an end as their conditions substantially improved. CONCLUSIONS: Palliative treatment of neonates/very young infants with terminal conditions at home seems to be similar to that of older children and feasible in children even with unstable conditions. The spectrum of diagnoses, signs and symptoms varies from older children with swallowing incoordination and artificial nutrition being of particular importance. Identifier An unambiguous reference to the resource within a given context DOI: 10.1007/s00431-015-2637-y Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2015 Borkhardt A Caregivers December 2016 List European Journal of Pediatrics Female Germany Höll J Home Care Home Care Services/statistics & Numerical Data Hospitals Pediatric Humans Infant Infant Mortality Infant Newborn Infants Jansen G Kuhlen M Life-limiting Conditions Male Neonates Palliative Care Palliative Care/statistics & Numerical Data Patient Comfort/statistics & Numerical Data Sabir H Terminal Care/statistics & Numerical Data Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month October 2017 List Notes 1432-1076 Hoell, Jessica I Warfsmann, Jens Gagnon, Gabriele Trocan, Laura Balzer, Stefan Oommen, Prasad T Borkhardt, Arndt Janssen, Gisela Kuhlen, Michaela ORCID: http://orcid.org/0000-0003-4577-0503 Journal Article Germany Eur J Pediatr. 2017 Aug 14. doi: 10.1007/s00431-017-2991-z.; Continental Europe; Europe. NLM UID: 7603873. PMID: 28808789. Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Palliative Care For Children With A Yet Undiagnosed Syndrome Publisher An entity responsible for making the resource available European Journal Of Pediatrics Date A point or period of time associated with an event in the lifecycle of the resource 2017 Subject The topic of the resource Children; End-of-life Care; Palliative Care; Undiagnosed Syndrome Creator An entity primarily responsible for making the resource Hoell J I; Warfsmann J; Gagnon G; Trocan L; Balzer S; Oommen P T; Borkhardt A; Jansen G; Kuhlen M Description An account of the resource The number of children without a diagnosis in pediatric palliative home care and the process of decision-making in these children are widely unknown. The study was conducted as single-center retrospective cohort study. Between January 2013 and September 2016, 198 children and young adults were cared for; 27 (13.6%) of these were without a clear diagnosis at the start of pediatric palliative home care. A definite diagnosis was ultimately achieved in three children. Median age was 7 years (0-25), duration of care 569 days (2-2638), and number of home visits 7.5 (2-46). Most patients are still alive (19; 70.4%). Median number of drugs administered was eight (range 2-19); antiepileptics were given most frequently. Despite the lack of a clear diagnosis (and thus prognosis), 13 (48.1%) parents faced with their critically ill and clinically deteriorating children decided in favor of a DNAR order. Comparing this with 15 brain-injured children, signs, symptoms, and supportive needs were similar in both groups. CONCLUSION: Children without a clear diagnosis are relatively common in pediatric palliative care and have-like all other patients-the right to receive optimized and symptom-adapted palliative care. Parents are less likely to choose treatment limitation for children who lack a definitive diagnosis. What is Known: * A clear diagnosis is usually considered important for best-practice pediatric palliative care (PPC) including advanced care planning (ACP). * Timely initiation of pediatric palliative care (PPC) is highly recommended in children with life-limiting conditions. What is New: * SWAN (syndrome without a name) children show similar signs and symptoms (mostly neurological) and have similar supportive needs as brain-injured children. * Defining treatment limitations in advance care planning is more difficult for parents of SWAN compared to brain-injured children. Identifier An unambiguous reference to the resource within a given context 10.1007/s00431-017-2991-z Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2017 Balzer S Borkhardt A Children End-of-life Care European Journal of Pediatrics Gagnon G Hoell J I Jansen G Kuhlen M October 2017 List Oommen P T Palliative Care Trocan L Undiagnosed Syndrome Warfsmann J Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month February 2017 List Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Experiences In Palliative Home Care Of Infants With Life-limiting Conditions Publisher An entity responsible for making the resource available European Journal Of Pediatrics Date A point or period of time associated with an event in the lifecycle of the resource 2016 Creator An entity primarily responsible for making the resource Kuhlen M; Holl JI; Sabir H; Borkhardt A; Jansen G Description An account of the resource UNLABELLED: The aim of this study was to determine the distinct issues neonates/infants with life-limiting conditions and their families face during palliative home care and to enable physicians/caregivers to carefully address their needs. Data on home-based palliative care of all neonates and infants, who were being taken care of by our paediatric palliative care team between 2007 and 2014, was analysed. A total of 31 patients (pts) were analysed. The majority of patients (n=17) were diagnosed with congenital malformations or chromosomal abnormalities. Twenty pts died, five of them in hospital. A high percentage of pts presented with swallowing incoordination (83.9%) and was fed either by nasogastric tube or percutaneous endoscopic gastrostomy. Of the pts, 71.0% were treated with analgesics, 45.2% were oxygen dependent, and 9.7% required mechanical ventilation. Highest mortality was seen in pts with perinatal complications (75%). In four (12.9%) pts, palliative home care could come to an end as their conditions substantially improved. CONCLUSIONS: Palliative treatment of neonates/very young infants with terminal conditions at home seems to be similar to that of older children and feasible in children even with unstable conditions. The spectrum of diagnoses, signs and symptoms varies from older children with swallowing incoordination and artificial nutrition being of particular importance. Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2016 Borkhardt A European Journal of Pediatrics February 2017 List Holl JI Jansen G Kuhlen M Sabir H