Tasks and interfaces in primary and specialized palliative care for Duchenne muscular dystrophy - A patients' perspective.
Duchenne muscular dystrophy, Life limiting diseases
Health services research
Neuromuscular disorders
Palliative care
Pediatric palliative care
Journal
Neuromuscular disorders : NMD
ISSN: 1873-2364
Titre abrégé: Neuromuscul Disord
Pays: England
ID NLM: 9111470
Informations de publication
Date de publication:
12 2020
12 2020
Historique:
received:
27
04
2020
revised:
31
08
2020
accepted:
23
09
2020
pubmed:
21
11
2020
medline:
15
10
2021
entrez:
20
11
2020
Statut:
ppublish
Résumé
In spite of the improvements in care and the emergence of disease-modifying treatments, Duchenne muscular dystrophy (DMD) remains a life-limiting disease of adolescence and (young) adulthood. Palliative care approaches and principles should be integrated from the point of diagnosis and implemented throughout the lifespan. A nationwide cross-sectional survey based on a mixed-method-design of qualitative and quantitative research approaches evaluated the structural implementation and perception of palliative care for DMD in Germany. Data analyses revealed that palliative care was predominantly provided at the primary care level by pediatricians, general practitioners and specialized multi-professional outpatient structures. The majority of patients did not utilize the scopes of specialized palliative structures. Simultaneously, insufficiently treated complex symptoms, emergent and elective hospitalizations and barriers in transitioning into adult care presented a considerable burden. A collaborative integrated model with a close cooperation of patients, families and care providers is proposed involving task areas and interfaces complementing primary and specialized palliative care (1) management of complex symptoms, (2) crisis support, (3) intermittent relief of the strain for caregivers, (4) coordination of care, (5) advance care planning and (6) end-of-life care. Specialized palliative care should be used as an "add-on" approach in time of need rather than as a prognosis or disease stage.
Identifiants
pubmed: 33214012
pii: S0960-8966(20)30621-0
doi: 10.1016/j.nmd.2020.09.031
pii:
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
975-985Informations de copyright
Copyright © 2020 Elsevier B.V. All rights reserved.
Déclaration de conflit d'intérêts
Declaration of Competing Interest The authors declared no potential conflicts of interest with respect to research, authorship, and/or publication of this article and received no financial support for the research, authorship, and/or publication of this article. This research did not receive any specific grant from funding agencies in the public, commercial, or non-profit-sectors.