Psychological Support in Adult Patients With Marfan Syndrome — MARFANPSY  

Rare Diseases Clinical Trial

Official title: Psychological Help in Patients With Marfan Syndrome: the Role of Quality of Life, Coping Mechanisms, Psychosocial Aspects and Self-esteem Levels

Status Recruiting

Clinical Trial Summary

The goal of this observational study is to identify key factors leading to psychotherapy or psychological support in adult subjects with Marfan syndrome (MSF). the main questions it aims to answer are:

• Understand and define which internal variables of the individual drive this request for psychological support;

• To learn about verify the impact that the clinical manifestations of MSF have on psychosocial aspects, self-esteem, subjective perception of the disease and coping mechanisms.

Clinical Trial Description

Patients following psychological interview during follow-up visits will be enrolled in the study.

The following self-report questionnaires will be used in understanding the impact the syndrome has on mental health and quality of life:

• Rosenberg Self- Esteem: 10 item Likert scale for assessing self-esteem;

• SF 36: 36 item scale assessing eight domains: physical functioning physical role limitations; bodily pain; general health perceptions; energy/vitality; social functioning; emotional role limitations and mental health;

• Cope NVI: to test measures coping behaviors as potential responses to stressors like social support, avoidance strategies, positive attitude, problem orientation and transcendent orientation;

• OQ45.2: measure of general psychological distress. ;

Related Conditions & MeSH terms

• Marfan Syndrome
• Psychology, Social
• Rare Diseases
• Syndrome

• NCT number: NCT05712577
• Study type: Observational
• Source: IRCCS Policlinico S. Donato
• Contact: Alessandro Pini, MD
• Phone: +390252774705
• Email: alessandro.pini@grupposandonato.it
• Status: Recruiting
• Start date: January 9, 2023
• Completion date: October 9, 2024