Avaliação de sintomas na distrofia muscular de Duchenne: uma estratégia de cuidado paliativo

Symptom assessment, in Duchenne Muscular Dystrophy (DMD), allows an adequate treatment, and the Edmonton Symptom Assessment System (ESAS) assess it:  evaluating clinical problems of patients in palliative care (pain, tiredness, drowsiness, nausea, appetite, shortness of breath, depression, anxiety, and well-being). Objective: To verify if patients with DMD understand the terms of the ESAS and if their symptoms could be assessed using this instrument. Methods: Ten patients with DMD were cross-sectional  evaluated in relation to the understanding of the ESAS items, capacity to describe symptom (using the ESAS and the Faces Scale) and the Motor Function Measure. The patient’s symptom by ESAS was also classified by evaluator. A descriptive and correlation (Spearman's correlation coefficient) analysis of data was performed. Results: All patients understood the symptoms of pain, tiredness, drowsiness, depression (sadness), and well-being. However, some patients did not understand the symptoms of nausea, appetite, shortness of breath. The general mean of all symptoms assessed by the ESAS was below 5 points. For the symptom ‘depression’ and ‘anxiety’, a strong correlation was found between the results of the ESAS and the Face scale (r = 0.64, and r = 0.65, respectively). Additionally, a perfect and strong correlation, respectively, was found between the ESAS completed by the patient and the evaluator for the items '‘depression’, and ‘anxiety’ (r=1.0) and a ‘drowsiness’ (r = 0.82). Conclusion: DMD patients understood the ESAS terms and graded their symptoms using this instrument. Therefore, it is not necessary to change the ESAS terms to assess patients with DMD.