Psychological Support in Adult Patients With Marfan Syndrome

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

Get a concise snapshot of the trial, including recruitment status, study phase, enrollment targets, and key timeline milestones.

Recruitment Status

RECRUITING

Total Enrollment

125 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-01-09

Study Completion Date

2024-10-09

Brief Summary

Review the sponsor-provided synopsis that highlights what the study is about and why it is being conducted.

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.

Related Clinical Trials

Explore similar clinical trials based on study characteristics and research focus.

Marfan Syndrome and Quality of Life of Pediatric Patients

NCT05748314

Rare Diseases Pediatric Disorder

ACTIVE_NOT_RECRUITING

APPLICATION OF THERAPEUTIC PHOTOGRAPHY AND EXPRESSIVE WRITING IN THE MANAGEMENT OF PATIENTS WITH MARFAN SYNDROME

NCT06872268

Marfan Syndrome

COMPLETED NA

Hands on - a Hand Care Guide in Systemic Sclerosis

NCT02610842

Scleroderma

COMPLETED NA

Social and Cognitive Factors in Carpal Tunnel Syndrome

NCT05023603

Carpal Tunnel Syndrome Carpal Tunnel

COMPLETED

Investigation of Psychometric Properties of the EuroQoL EQ-5D-5L in Patients With Carpal Tunnel Syndrome

NCT02276105

Carpal Tunnel Syndrome

COMPLETED

Detailed Description

Dive into the extended narrative that explains the scientific background, objectives, and procedures in greater depth.

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.

Conditions

See the medical conditions and disease areas that this research is targeting or investigating.

Rare Diseases Marfan Syndrome Psychology, Social

Study Design

Understand how the trial is structured, including allocation methods, masking strategies, primary purpose, and other design elements.

Observational Model Type

COHORT

Study Time Perspective

CROSS_SECTIONAL

Study Groups

Review each arm or cohort in the study, along with the interventions and objectives associated with them.

MFS_PT+

MFS patients who followed psychological support/psychotherapy

Questionnaire

Intervention Type OTHER

Rosenberg Self- Esteem scale

Questionnaire

Intervention Type OTHER

Short Form 36 scale

Questionnaire

Intervention Type OTHER

Coping orientation to the problems experienced - New Version in Italian

Questionnaire

Intervention Type OTHER

Outcome Questionnaire - version 42.5

MFS_PT-

MFS patients who never followed psychological support/psychotherapy

Questionnaire

Intervention Type OTHER

Rosenberg Self- Esteem scale

Questionnaire

Intervention Type OTHER

Short Form 36 scale

Questionnaire

Intervention Type OTHER

Coping orientation to the problems experienced - New Version in Italian

Questionnaire

Intervention Type OTHER

Outcome Questionnaire - version 42.5

Interventions

Learn about the drugs, procedures, or behavioral strategies being tested and how they are applied within this trial.

Questionnaire

Rosenberg Self- Esteem scale

Intervention Type OTHER

Questionnaire

Short Form 36 scale

Intervention Type OTHER

Questionnaire

Coping orientation to the problems experienced - New Version in Italian

Intervention Type OTHER

Questionnaire

Outcome Questionnaire - version 42.5

Intervention Type OTHER

Eligibility Criteria

Check the participation requirements, including inclusion and exclusion rules, age limits, and whether healthy volunteers are accepted.

Inclusion Criteria

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