“Let's Bring Her Home First.” Patient Characteristics and Place of Death in Specialized Pediatric Palliative Home Care

Bender, Harvey W.; Riester, Martin Bernhard; Borasio, Gian Domenico; Führer, Monika

doi:10.1016/j.jpainsymman.2017.04.006

Cited by 36 publications

(41 citation statements)

References 22 publications

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“…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%

“…Most of the children presented with neurologic symptoms. This has previously been reported to be the most prevalent symptom (up to 75%) in all children in PPC [ 2 , 10 , 11 ]. Particularly difficulty moving, seizures, spasticity, and somnolence were not only recorded to be the most frequent but likewise severe and often intractable and, thus, persisting or even increasing during PPC.…”

Section: Discussionmentioning

confidence: 93%

“…Children referred to PPC at less than 1 year of age had a significantly shorter period of care and died earlier/younger pointing towards a rapid disease progression and, thus, the necessity of a very timely identification of and particular attention to the palliative needs of the youngest. In contrast, the median reported age of all children referred to PPC is higher, thus, reflecting the high numbers of children in PPC with conditions with possible life prolonging treatment available and irreversible non-progressive conditions [ 2 , 7 , 9 ]. Indeed, most of these children are referred to PPC due to acute health exacerbations such as infectious complications instead of progressive symptoms.…”

Section: Discussionmentioning

confidence: 99%

“…The number of children, adolescents and young adults with life-limiting conditions (LLCs) and, thus, a right of paediatric palliative care (PPC) is increasing [ 1 ]. However, most data on symptoms and needs of children in PPC refer to those with cancer, whereas the majority of the children is living with or dying from LLCs other than cancer [ 2 ]. Little is known on the symptoms and needs of these children.…”

Section: Introductionmentioning

confidence: 99%

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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: 94%

Section: Discussionmentioning

confidence: 93%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Challenges of palliative care in children with inborn metabolic diseases

Hoell

Warfsmann

Distelmaier

et al. 2018

Orphanet J Rare Dis

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“…Care intensity may be high in children and families living with cancer, although for a shorter period of time. In contrast, children with non-cancer diagnoses, especially those with static encephalopathy (Together for Short Lives Category 4), received care intermittently but over longer-time periods [ 28 ].…”

Section: Trajectorymentioning

confidence: 99%

Pediatric Palliative Care for Children with Progressive Non-Malignant Diseases

Siden

2018

Children

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Spezialisierte ambulante Palliativversorgung für Kinder, Jugendliche und ihre Familien – die besonderen Belange der Zielgruppe. Ergebnisse der ELSAH-Studie

Engler

Schütze

Hach

et al. 2022

Bundesgesundheitsbl

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Zusammenfassung Hintergrund und Ziel Lebenslimitierend erkrankte Kinder und Jugendliche mit komplexem Symptomgeschehen haben Anspruch auf eine spezialisierte ambulante Palliativversorgung (SAPV). In der Richtlinie zur SAPV heißt es lediglich: „Den besonderen Belangen von Kindern und Jugendlichen ist Rechnung zu tragen.“ Das Ziel der Studie ist es deshalb, diese besonderen Belange zu identifizieren und Empfehlungen zur Überarbeitung der SAPV-Richtlinie zu formulieren. Methoden Sequenzielles Mixed-Methods-Design mit Fragebogenerhebungen, qualitativen Interviews, teilnehmenden Beobachtungen und Fokusgruppendiskussionen mit Angehörigen, Patient*innen und Leistungserbringer*innen der SAPV in Hessen sowie der Auswertung von Dokumentationsdaten der hessischen SAPV-Teams. Ergebnisse Kinder und Jugendliche in der SAPV leiden an komplexen, oftmals seltenen Erkrankungen und bedürfen einer besonders aufwendigen Palliativversorgung durch ein Team mit pädiatrischer Expertise. Die SAPV muss die gesamte Familie einbeziehen und oftmals überregional verteilte Versorger*innen koordinieren. Zudem ist eine besonders aufwendige psychosoziale Versorgung von Patient*innen und Angehörigen notwendig. Die SAPV für Kinder und Jugendliche ist weniger bekannt als die SAPV für Erwachsene und der Zugang für die Familien deshalb oft schwierig. Für lebenslimitierend erkrankte Kinder und Jugendliche, die zwar einer aufsuchenden Palliativversorgung bedürfen, jedoch keinen Bedarf an einer so intensiven Betreuung wie in der SAPV haben, besteht eine Versorgungslücke. Fazit Die SAPV von Kindern und Jugendlichen sowie von volljährigen Patient*innen, die seit dem Kindes- und Jugendalter erkrankt sind, bedarf einer eigenständigen Versorgungsform mit Vergütungsmodalitäten, die den besonderen Versorgungsbedarf und -aufwand abbilden.

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“Let's Bring Her Home First.” Patient Characteristics and Place of Death in Specialized Pediatric Palliative Home Care

Cited by 36 publications

References 22 publications

Challenges of palliative care in children with inborn metabolic diseases

Challenges of palliative care in children with inborn metabolic diseases

Pediatric Palliative Care for Children with Progressive Non-Malignant Diseases

Spezialisierte ambulante Palliativversorgung für Kinder, Jugendliche und ihre Familien – die besonderen Belange der Zielgruppe. Ergebnisse der ELSAH-Studie

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