Life Quality Study for PFAPA Patient
Summary
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.
Study Design
Observational Model: Cohort, Time Perspective: Prospective
Conditions
PFAPA Syndrome
Intervention
Quality of life
Location
Centre hospitalier de Versailles
Le Chesnay
France
Status
Recruiting
Source
Central Hospital, Versailles
Results (where available)
Links
- Source: http://clinicaltrials.gov/show/NCT02811705
- ClinicalTrials.gov processed this data on June 22, 2016
Published on BioPortfolio: 2016-06-23T19:08:22-0400
Clinical Trials
Tonsillotomy or Follow-up in PFAPA Syndrome
Children with periodic fever, aphthous stomatitis, pharyngitis, adenitis (PFAPA) -syndrome diagnosis will be randomised either to tonsillotomy (partial tonsillectomy) or 3 months follow up...
Periodic Fever, Aphthous stomatitis, Pharyngitis and cervical Adenitis (PFAPA) is one of the most common, least explored periodic fever syndrome in childhood. This study aims to investigat...
The purpose of study is to see if adding probiotics to corticosteroid treatment for children with PFAPA could improve the health and daily of patients through reduction in febrile period f...
Survey on QUality of Life In myeloDisplasia (SQUID)
The purpose of this study is to evaluate the correlation between quality of life (QoL) and hemoglobin in patients affected by myelodysplastic syndrome and to compare the MDS (MyeloDisplast...
Quality of Life And Psychological Symptoms In Children With Cyclic Vomiting Syndrome (CVS)
The primary aim of this study is to characterize the quality of life of youth with Cyclic Vomiting Syndrome (CVS) as well as the strategies they use to cope with stress, their strengths an...
PubMed Articles
Systematic review of quality of life in Turner syndrome.
This study aimed to systematically review the available literature on "quality of life" (QoL) or "health-related quality of life" (HRQoL) in Turner syndrome (TS) patients and to analyze the relations ...
Patient-Reported Quality of Life in the Highest Functioning Patients With Treacher Collins Syndrome.
Treacher Collins syndrome has a wide variation of clinical presentation, including airway obstruction and hearing loss. The objective of this study was to assess patient-rated quality of life in Treac...
To compare the long-term morbidity of patients with periodic fever, aphthous stomatitis, pharyngitis, and adenitis (PFAPA) syndrome treated by tonsillectomy (TE) in childhood to that of matched contro...
Restless legs syndrome (RLS) is a neurological disorder with a prevalence of up to 15%, although little is known about its impact upon quality of life.
Systemic Lupus Erythematosus (SLE) is associated to an increased prevalence of Metabolic Syndrome (MeS) and to a reduction of Quality of Life (QoL). The aim of this study is to evaluate the associatio...
Medical and Biotech [MESH] Definitions
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.
