Polysymptomatology and Polypharmacy at End of Life in Patients with Duchenne Muscular Dystrophy.
Journal
The Journal of pediatrics
ISSN: 1097-6833
Titre abrégé: J Pediatr
Pays: United States
ID NLM: 0375410
Informations de publication
Date de publication:
10 2023
10 2023
Historique:
received:
19
11
2022
revised:
26
06
2023
accepted:
27
06
2023
medline:
25
9
2023
pubmed:
5
7
2023
entrez:
4
7
2023
Statut:
ppublish
Résumé
To characterize symptom frequency and symptom-directed treatment approaches in patients who died with advanced Duchenne muscular dystrophy (DMD). This was a retrospective cohort study of patients in a multidisciplinary DMD program who died between January 1, 2013, and June 30, 2021. Inclusion criteria were patients who died with advanced DMD in the time period studied; exclusion criteria were low exposure to palliative care (<2 encounters). Demographic, symptom, and end-of-life data, as well as medications used for symptom management, were abstracted from the electronic medical record. In total, 15 patients were eligible for analysis. The median age of death was 23 years (range 15-30 years). One (6.7%) experienced a full code at death, 8 (53.3%) had do-not-resuscitate orders, and 4 (26.7%) had limited do-not-resuscitate orders. Mean palliative care exposure was 1280 days. All 15 (100%) had pain and dyspnea; 14 (93.3%) anorexia, constipation, and sleep difficulty; 13 (86.7%) wounds; and 12 (80%) anxiety and nausea/vomiting. Multiple medications and drug classes were used to target symptoms. We found significant polysymptomatology and polypharmacy in patients who died with advanced DMD. Clinicians who care for patients with advanced DMD should clarify goals of care and document advance care planning. Given the complexity of multisystem disease progression, palliative care should provide subspecialty pain management and assist with psychosocial burdens.
Identifiants
pubmed: 37402439
pii: S0022-3476(23)00461-4
doi: 10.1016/j.jpeds.2023.113598
pii:
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
113598Informations de copyright
Copyright © 2023 Elsevier Inc. All rights reserved.
Déclaration de conflit d'intérêts
Declaration of Competing Interest R.T. received a Schmidlapp Women’s Scholar Award from Cincinnati Children’s Hospital Medical Center, which funded a summer research fellowship role for I.R. to work on this study. The funding agency had no role in study design, data collection, interpretation, or analysis, or in the preparation or submission of this manuscript. The other authors declare no conflicts of interest.