Profile of physical and psychological health of mothers-caregivers of children with Duchenne Muscular Dystrophy

• Grant number: 14/08067-0
• Support Opportunities: Scholarships in Brazil - Doctorate (Direct)
• Effective date (Start): October 01, 2014
• Effective date (End): July 31, 2015
• Field of knowledge: Health Sciences - Medicine - Maternal and Child Health
• Principal Investigator: Monica Levy Andersen
• Grantee: Karen Tieme Nozoe
• Host Institution: Escola Paulista de Medicina (EPM). Universidade Federal de São Paulo (UNIFESP). Campus São Paulo. São Paulo , SP, Brazil

Abstract

Introduction: Duchenne Muscular Dystrophy (DMD) is a neuromuscular disease characterized by genetic alteration, whose consequence is the progression of muscle degeneration. This disease has an incidence of 1 in every 3,500 newborn males. During the course of the disease there is loss of mobility, swallowing difficulties and significant reduction of respiratory capacity. Due to the severity and consequences caused by this disease is inevitable the need for a caregiver, especially the mother. This shall be wholly devoted to the child, may leave aside the care of their physical and psychological health. Because of this extreme amount of work associated with other factors such as stress, mothers-caregivers are more likely to development infections, depression, anxiety, insomnia, immune and cardiovascular damage. Moreover, they are more likely to develop sleep disorders, which can cause these high risk diseases. Objective: To identify the profile of physical and psychological health of mothers, caregivers of children and adolescents with DMD. Also to identify the predictive factors related to the impairment of quality of subjective sleep, sexuality and increased cortisol concentrations that were previously observed in the period of the master. Methods: In total, 70 mothers assessed, distributed into 2 groups: Group 1- composed of 35 mothers-caregivers of children with DMD (case group); Group 2- composed of 35 mothers (control group) of children without any neuromuscular disease or any chronic disease. In both groups of mothers will be evaluated sleep patterns objectively by polysomnography and pattern of sleep microstructure by means of spectral analysis. Still, it will be analyzed the sleep-wake cycle of these mothers in their daily routine in the presence of his son through actigraph for 15 days. After polysomnography blood collection for evaluation of some immunological, inflammatory, metabolic, cardiovascular, hormonal and muscular parameters will be performed. Psychological evaluation for the analysis of anxiety, depression, fatigue, stress and quality of life through questionnaires will be held. Analyze the commitment of health as well as your question for this work as caregivers can contribute significantly in the lives of these mothers, as they may go on to receive more attention and care. (AU)

Scientific publications

(5)

(References retrieved automatically from Web of Science and SciELO through information on FAPESP grants and their corresponding numbers as mentioned in the publications by the authors)

NOZOE, KAREN T.; POLESEL, DANIEL N.; MOREIRA, GUSTAVO A.; PIRES, GABRIEL N.; AKAMINE, RICARDO T.; TUFIK, SERGIO; ANDERSEN, MONICA L.. Sleep quality of mother-caregivers of Duchenne muscular dystrophy patients. Sleep and Breathing, v. 20, n. 1, p. 129-134, MAR 2016. (14/08067-0)

NOZOE, KAREN TIEME; MOREIRA, GUSTAVO ANTONIO; CORRADINI TOLINO, JOSE RODOLFO; PRADELLA-HALLINAN, MARCIA; TUFIK, SERGIO; ANDERSEN, MONICA LEVY. The sleep characteristics in symptomatic patients with Duchenne muscular dystrophy. Sleep and Breathing, v. 19, n. 3, p. 1051-1056, SEP 2015. (14/08067-0)

NOZOE, KAREN T.; AKAMINE, RICARDOT.; MAZZOTTI, DIEGO R.; POLESEL, DANIEL N.; GROSSKLAUSS, LUIS F.; TUFIK, SERGIO; ANDERSEN, MONICA L.; MOREIRA, GUSTAVO A.. Phenotypic contrasts of Duchenne Muscular Dystrophy in women: Two case reports. SLEEP SCIENCE, v. 9, n. 3, p. 129-133, JUL-SEP 2016. (14/08067-0)

NOZOE, KAREN TIEME; KIM, LENISE JIHE; POLESEL, DANIEL NINELLO; HIROTSU, CAMILA; DE SOUZA, ALTAY LINO; HACHUL, HELENA; TUFIK, SERGIO BRASIL; TUFIK, SERGIO; ANDERSEN, MONICA LEVY; MOREIRA, GUSTAVO ANTONIO. Sleep pattern and spectral analysis of caregiver-mothers of sons with Duchenne muscular dystrophy, and an examination of differences between carriers and non-carriers. Sleep Medicine, v. 32, p. 114-121, APR 2017. (15/19136-5, 14/08067-0)

NOZOE, KAREN T.; POLESEL, DANIEL N.; JERONIMO, GIOVANNA; MOREIRA, GUSTAVO A.; TUFIK, SERGIO; ANDERSEN, MONICA L.. Sleep disturbance in people with dementia and its effect on caregivers. AUSTRALASIAN JOURNAL ON AGEING, v. 34, n. 4, p. 277-278, DEC 2015. (14/08067-0)