Narcolepsy: evaluation of the quality of life and social impact

THESES

Narcolepsy: evaluation of the quality of life and social impact (abstract)^*. Dissertation. São Paulo, 2007.

Heloísa Helena Dal Rovere^**

INTRODUCTION: Narcolepsy is a chronic neurological condition whose main symptom is excessive daytime sleepiness, associated with cataplexy, sleep paralysis and hypnagogic hallucinations. The prevalence is between 1:2,000 and 1:40,000 individuals, with onset during childhood through adulthood. Narcolepsy is caused by a deficit of orexin (hypocretin) in lateral hypothalamus cells. Patients with narcolepsy have trouble remaining alert and awake during routine and monotonous tasks, with risks of accidents leading to serious social loss and impact on work and social-family relations in the perception of quality of life.

PURPOSE: To evaluate: a) the perception or quality of life in patients with narcolepsy; b) the perception of social impact; c) the existence of associations between socio-economic profile, perception of quality of life and perception of social impact; d) sleeping patterns.

METHOD: Forty patients with narcolepsy were evaluated, of which 28 women and 12 men, with an average age of 42. The instruments used were the Social Service Database Questionnaire of the Social Service Medical Division IC/HC; the WHOQOL-Bref Quality of Life Evaluation Questionnaire, the Social Impact Evaluation Questionnaire and the Giglio Adult Sleep Questionnaire.

RESULTS: This study demonstrated the conclusion at next.

CONCLUSION: 1) narcolepsy brings about compromised quality of life for patients, impairing physical and emotional functions, interfering in working conditions and family dynamics; 2) narcolepsy produces a negative social impact on various spheres of patients' lives, compromising instrumental activities of daily life and work situations; 3) There was no association of socio-economic condition as a determining factor in the perception of quality of life; 4) persons with narcolepsy have a higher degree of dissatisfaction in relation to sleeping pattern, such as fragmented sleep, nighttime awakenings and the presence of parasomnias.

Key words: narcolepsy; sleep; sleep disorders; quality of life.

*

Narcolepsia: avaliação da qualidade de vida e impacto social. Dissertação de Mestrado. Faculdade de Medicina da Universidade de São Paulo (FMUSP) (Área de concentração: Neurologia). Orientador: Rubens Reimão.

Publication Dates

• Publication in this collection
  03 Apr 2008
• Date of issue
  Mar 2008