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Polysymptomatology and Polypharmacy at End of Life in Patients with Duchenne Muscular Dystrophy.
Ramicone, Isabella; Whitford, Brittney; Mosley, Luke; Thienprayoon, Rachel.
Afiliação
  • Ramicone I; Division of Palliative Care, Department of Anesthesia, University of Cincinnati College of Medicine, Cincinnati, OH.
  • Whitford B; Division of Palliative Care, Department of Anesthesia, University of Cincinnati College of Medicine, Cincinnati, OH.
  • Mosley L; Division of Palliative Care, Department of Anesthesia, University of Cincinnati College of Medicine, Cincinnati, OH; Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH.
  • Thienprayoon R; Division of Palliative Care, Department of Anesthesia, University of Cincinnati College of Medicine, Cincinnati, OH; Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH. Electronic address: Rachel.thienprayoon@cchmc.org.
J Pediatr ; 261: 113598, 2023 10.
Article em En | MEDLINE | ID: mdl-37402439
OBJECTIVE: To characterize symptom frequency and symptom-directed treatment approaches in patients who died with advanced Duchenne muscular dystrophy (DMD). STUDY DESIGN: 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. RESULTS: 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. CONCLUSIONS: 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.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Distrofia Muscular de Duchenne Tipo de estudo: Diagnostic_studies / Observational_studies Limite: Adolescent / Adult / Humans Idioma: En Revista: J Pediatr Ano de publicação: 2023 Tipo de documento: Article País de publicação: Estados Unidos
Texto completo
Adicionar na Minha BVS
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Distrofia Muscular de Duchenne Tipo de estudo: Diagnostic_studies / Observational_studies Limite: Adolescent / Adult / Humans Idioma: En Revista: J Pediatr Ano de publicação: 2023 Tipo de documento: Article País de publicação: Estados Unidos