Thoracic Aortic Aneurysm (TAA)
Conditions
Keywords
risk stratification, quality of life, rare disease, survey
Brief summary
The aim of this observational study is to define the behavioural and cardiovascular risk factor profiles of patients with genetic aortopathies. The main questions it aims to answer are: * How do the interconnections between lifestyle, stress, psychological condition, perception of illness, and state of health influence each other in this population? * Beyond traditional risk factors, additional emerging factors should be considered, including pregnancy-related complications, sedentary lifestyle, early menopause and depression. The interplay between eating disorders, lifestyle factors and autoimmune or inflammatory bowel diseases remains poorly understood.
Detailed description
Thoracic aortic aneurysms (TAA) present peculiar symptoms as well as high mortality due to complications related to dilatation and dissection of the ascending aorta and great arteries. The presence or absence of extra-aortic features determines whether TAADs are syndromic, associated with diseases affecting other systems and organs, or non-syndromic, with manifestations limited to the aorta. Life expectancy of patients withTAA has improved markedly in the last decades, but still remains lower than that of the general population.
Interventions
OTHERJourney to diagnosis
Questions relating to the course and experience/history of the disease from the onset of symptoms to confirmation of diagnosis; accessibility to referral facilities for treatment and follow-up.
OTHERQuality of life, functional health and well-being
Qestionnaires
OTHERAwareness and self-esteem, acceptance of the condition
questionnaire related to the quality of life and self-care
OTHERpsychological and physical well-being
questionnaire to describe psychological and physical well-being.
Sponsors
IRCCS Policlinico S. Donato
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
14 Years to 60 Years
Healthy volunteers
No
Inclusion criteria
* signed onformed consent * Ability to speak, read and write in Italian
Exclusion criteria
\-
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Journey to diagnosis | 15 months | The mean, median, standard deviation and interquartile range will be used for continuous variables, whereas frequency and percentage will be applied for nominal and categorical variables. The Shapiro-Wilks test will be used to assess the Gaussian distributions. |
| Quality of life, functional health and well-being | 15 months | The mean, median, standard deviation and interquartile range will be used for continuous variables, whereas frequency and percentage will be applied for nominal and categorical variables. The Shapiro-Wilks test will be used to assess the Gaussian distributions. |
| Awareness and self-esteem, acceptance of the condition | 15 months | The mean, median, standard deviation and interquartile range will be used for continuous variables, whereas frequency and percentage will be applied for nominal and categorical variables. The Shapiro-Wilks test will be used to assess the Gaussian distributions. |
| psychological and physical well-being | 15 months | The mean, median, standard deviation and interquartile range will be used for continuous variables, whereas frequency and percentage will be applied for nominal and categorical variables. The Shapiro-Wilks test will be used to assess the Gaussian distributions. |
Countries
Italy
Contacts
CONTACTAlessandro Pini, MD
Outcome results
None listed