Palliative care in children and adolescents with Duchenne Muscular Dystrophy: applicability of Edmonton Symptom Assessment System (ESAS)

• Grant number: 19/15408-1
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Effective date (Start): October 01, 2019
• Effective date (End): September 30, 2021
• Field of knowledge: Health Sciences - Physiotherapy and Occupational Therapy
• Principal Investigator: Ana Cláudia Mattiello-Sverzut
• Grantee: Josiane Rosires Pavão
• Host Institution: Faculdade de Medicina de Ribeirão Preto (FMRP). Universidade de São Paulo (USP). Ribeirão Preto , SP, Brazil

Abstract

The treatment of Duchenne Muscular Dystrophy (DMD) is palliative and aims to minimize dysfunctions and promote the quality of life of patients and their families. From the point of view of palliative care, which is indicated since the diagnosis of the disease, the evaluation of symptoms is essential to allow adequate therapeutic management. The Edmonton Symptom Assessment System (ESAS) is an instrument that encompasses the evaluation of multiple symptoms of patients in palliative care (pain, tiredness, drowsiness, nausea, appetite, shortness of breath, depression, anxiety and well-being). Although patients with DMD present the symptoms described in this instrument (ESAS), there is still no knowledge about its use in this population. Therefore, the objective is to evaluate the applicability of ESAS in patients with DMD and to correlate the results obtained with other scales already used in DMD and / or pediatrics. To this end, they will participate in this cross-sectional study, patients from the outpatient clinic of children's myopathies at the HCFMRP-USP Rehabilitation Center. Initially a test group will be carried out to verify the understanding of the ESAS terms; then each assessment will be applied to the ESAS and the instruments that individually evaluate each symptom: the pain will be evaluated through the The Faces Pain Scale-Revised (FPS-R), fatigue by the Modified Borg Scale, sleepiness by the Scale of Sleep Disorders in Children, shortness of breath by the subtitled Visual Analogue Scale of Dyspnea, anxiety and depression by the Hospital Anxiety and Depression Scale (HADS) and for well-being, the Life Satisfaction Index for Adolescents Scale ( LSI-A). The Spearman correlation coefficient will be used in the analysis. Intra-examiner reliability (test-retest) will be evaluated in a minimum interval of 4 hours and a maximum of 4 days between the evaluations and in this case, the analysis will be performed by the Intraclass Correlation Coefficient.