Experiences in palliative home care of infants with life-limiting conditions

Kuhlen, Michaela; Höll, Jessica I.; Sabir, Hemmen; Janßen, Gisela

doi:10.1007/s00431-015-2637-y

Cited by 12 publications

(8 citation statements)

References 21 publications

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“…As one might hypothesize that these are signs of irreversible decline in the CNS including disordered central breathing, one would speculate that these children are more frequently and/or severe affected. However, those numbers differed only slightly from previous reports on children with neurological impairment in PPC [ 9 , 14 ]. Of note, a remarkable number of children with metabolic diseases recurrently presented with vomiting and feeding difficulties.…”

Section: Discussioncontrasting

confidence: 97%

“…Most children with metabolic diseases reported by us who died during PPC did so in hospital or even in ICU. This is in contrast to previous reports on children dying in PPC, in that most of the children died at home [ 2 , 9 , 14 , 15 ]. Looking into these children in more detail, on the one side this is due to the high number of parents who opt for the full range of life-sustaining measure [ 16 ].…”

Section: Discussioncontrasting

confidence: 94%

“…In accordance with recent reports on children in PPC, also respiratory and gastrointestinal symptoms were frequently present in children with inborn metabolic diseases [ 9 , 12 – 14 ]. As one might hypothesize that these are signs of irreversible decline in the CNS including disordered central breathing, one would speculate that these children are more frequently and/or severe affected.…”

Section: Discussionsupporting

confidence: 91%

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Challenges of palliative care in children with inborn metabolic diseases

Hoell

Warfsmann

Distelmaier

et al. 2018

Orphanet J Rare Dis

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BackgroundOur objective was to evaluate children with metabolic diseases in paediatric palliative home care (PPC) and the process of decision-making. This study was conducted as single-centre retrospective cohort study of patients in the care of a large specialized PPC team.ResultsBetween 01/2013 and 09/2016, 198 children, adolescents and young adults were in the care of our PPC team. Twenty-nine (14.6%) of these patients had metabolic conditions. Median age at referral was 2.6 years (0–24), median duration of care 352 days (3–2248) and median number of home visits 13 (1–80). Most patients are still alive (16; 55.2%). Median number of drugs administered was 5 (range 0–12), antiepileptics were given most frequently.Symptom burden was high in all children with metabolic disorders at referral and remained high throughout care. Predominant symptoms were gastrointestinal, respiratory and neurologic symptoms.Children with metabolic conditions, who were referred to PPC younger than 1 year of age had a shorter period of care and died earlier compared to those children, who were referred to PPC later in their lives (older than 10 years of age).Eleven (37.9%) of the children initially had no resuscitation restrictions and 7 (53.8%) of those who died, did so on ICU.ConclusionsAbout 15% of children with life-limiting conditions in PPC present with metabolic diseases. Symptom burden is high with neurologic, respiratory and gastrointestinal symptoms being the most frequent and most of those being difficult to treat. In these children, particular attention needs to be addressed to advance care planning.Electronic supplementary materialThe online version of this article (10.1186/s13023-018-0868-5) contains supplementary material, which is available to authorized users.

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Section: Discussioncontrasting

confidence: 97%

Section: Discussioncontrasting

confidence: 94%

Section: Discussionsupporting

confidence: 91%

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Challenges of palliative care in children with inborn metabolic diseases

Hoell

Warfsmann

Distelmaier

et al. 2018

Orphanet J Rare Dis

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“…Im Untersuchungszeitraum von 2009-2014 gelang es im SAPPV-Programm der Kinder-und Jugendklinik Erlangen bereits in der Aufbauphase, dass 61 % der Kinder in ihrer häuslichen Umgebung versterben konnten. Damit konnte das Ziel einer Palliativversorgung bis zum Versterben in häuslicher Umgebung bereits in den ersten Jahren des Aufbaus umgesetzt werden [18,19]. Die vorliegende Analyse zeigt auch, dass die Gründe für eine Verlagerung der ambulanten Versorgung zu einer stationären Behandlung während der SAPPV nur in 12,8 % der stationären Einweisungen aufgrund einer ausgeprägten Schmerzsymptomatik erfolgte.…”

Section: Diskussionunclassified

“…Diese waren z. B. Krampfanfälle, steigender Hirndruck, Notwendigkeit einer Transfusion von Erythrozyten oder Thrombozyten [19,24,27]. Dabei ist anzumerken, dass in den 57 beschriebenen Fällen, die eine Verschlechterung des Allgemeinzustandes als Einweisungsgrund hatten, auch alle 37 Fälle mit invasiven Maßnahmen und ausgeprägter Schmerzsymptomatik eingeschlossen sind.…”

Section: Diskussionunclassified

Praktische Umsetzung einer spezialisierten ambulanten pädiatrischen Palliativversorgung im Medical Valley der Europäischen Metropolregion Nürnberg

2017

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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. 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. 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. 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.

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30 Jahre Kinderpalliativmedizin am Universitätsklinikum Düsseldorf

Kuhlen

2017

Monatsschr Kinderheilkd

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Experiences in palliative home care of infants with life-limiting conditions

Cited by 12 publications

References 21 publications

Challenges of palliative care in children with inborn metabolic diseases

Challenges of palliative care in children with inborn metabolic diseases

Praktische Umsetzung einer spezialisierten ambulanten pädiatrischen Palliativversorgung im Medical Valley der Europäischen Metropolregion Nürnberg

30 Jahre Kinderpalliativmedizin am Universitätsklinikum Düsseldorf

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