Do patients with Duchenne muscular dystrophy receive the palliative care approach?
, 2, 1, 1, 1
Abstract
Background: Palliative care (PC) is indicated for Duchenne muscular dystrophy (DMD), however, access to this approach is difficult.
Purpose: To verify whether patients with Duchenne muscular dystrophy (DMD) received the PC approach and evaluate the perceptions of health professionals about PC.
Methods: General information about the patient, interventions used to treat them, and PC approach were collected from the medical records. Health professionals completed a questionnaire designed to assess their knowledge about PC concepts. Data were analyzed descriptively.
Results: Twenty-five cases were analyzed. Patients received the multidisciplinary approach (84%) and 12% PC approach. Among the 58 professionals interviewed, 50% were unaware of PC assessment instruments, and 34.5% answered “no” or “I do not know” to the statement “Patients with DMD should receive PC since diagnosis”.
Conclusions: The isolated implementation of strategies aimed at improving the quality of life for DMD patients does not constitute an effective inclusion of PC in clinical practice. To effectively incorporate the PC approach in clinical practice, healthcare professionals must be sufficiently trained.
Keywords: pediatric palliative careDuchenne muscular dystrophydeathend-of-life care
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