This cohort study aims to assess the quality of life (or welfare) related to the health of children and adolescents with an non genetics auto-inflammatory disease PFAPA or Marshall syndrome to compare it to children or adolescents with recurrent fever genetics of Familial Mediterranean fever (FMF) in order to improve their overall care.
Observational Model: Cohort, Time Perspective: Prospective
PFAPA Syndrome
Quality of life
Centre hospitalier de Versailles
Le Chesnay
France
Recruiting
Central Hospital, Versailles
Published on BioPortfolio: 2016-06-23T19:08:22-0400
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Quality-adjusted Life Years
A measurement index derived from a modification of standard life-table procedures and designed to take account of the quality as well as the duration of survival. This index can be used in assessing the outcome of health care procedures or services. (BIOETHICS Thesaurus, 1994)
Quality Of Life
A generic concept reflecting concern with the modification and enhancement of life attributes, e.g., physical, political, moral and social environment; the overall condition of a human life.
Vulvodynia
Complex pain syndrome with unknown etiology, characterized by constant or intermittent generalized vulva pain (Generalized vulvodynia) or localized burning sensations in the VESTIBULE area when pressure is applied (Vestibulodynia, or Vulvar Vestibulitis Syndrome). Typically, vulvar tissue with vulvodynia appears normal without infection or skin disease. Vulvodynia impacts negatively on a woman's quality of life as it interferes with sexual and daily activities.
Hospice And Palliative Care Nursing
A nursing specialty concerned with care of patients facing serious or life-threatening illnesses. The goal of palliative nursing is to prevent and relieve suffering, and to support the best possible quality of life for patients and their families. Hospice nursing is palliative care for people in their final stages of life.
National Institute Of Nursing Research (u.s.)
Component of the NATIONAL INSTITUTES OF HEALTH. It conducts and supports clinical and basic research to establish a scientific basis for the care of individuals across the life span, from the management of patients during illness and recovery to the reduction of risks for disease and disability; the promotion of healthy lifestyles; the promotion of quality of life in those with chronic illness; and the care for individuals at the end of life. It was established in 1986.