Psychological Support in Adult Patients With Marfan Syndrome (MARFANPSY)

San Donato Group (GSD)

Status

Enrolling

Conditions

Marfan Syndrome

Psychology, Social

Rare Diseases

Treatments

Other: Questionnaire

Study type

Observational

Funder types

Other

Identifiers

NCT05712577

MarfanPsy

Details and patient eligibility

About

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.

Full 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.

Enrollment

125 estimated patients

Sex

All

Ages

18+ years old

Volunteers

No Healthy Volunteers

Inclusion criteria

Subjects affected by Marfan syndrome;
Subjects currently in follow-up at Cardiovascular Genetic Centre, IRCCS Policlinico San Donato;
Signed informed consent.

Exclusion criteria