Palliative care for children with a yet undiagnosed syndrome.
Eur J Pediatr
; 176(10): 1319-1327, 2017 Oct.
Article
em En
| MEDLINE
| ID: mdl-28808789
ABSTRACT
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.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Cuidados Paliativos
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Diagnóstico Tardio
Tipo de estudo:
Diagnostic_studies
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Guideline
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Observational_studies
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Prognostic_studies
Limite:
Adolescent
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Adult
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Child
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Child, preschool
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Female
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Humans
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Infant
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Male
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Newborn
País/Região como assunto:
Europa
Idioma:
En
Revista:
Eur J Pediatr
Ano de publicação:
2017
Tipo de documento:
Article
País de afiliação:
Alemanha