Psychological Support in Adult Patients With Marfan Syndrome

Study Overview
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Brief Summary
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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.

Detailed Description
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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.

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

Conditions
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Rare Diseases, Marfan Syndrome, Psychology, Social

Intervention / Treatment
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* Other: Questionnaire
* Other: Questionnaire
* Other: Questionnaire
* Other: Questionnaire


Participation Criteria
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Eligibility Criteria
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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: Subjects with cognitive deficits

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| MFS_PT+<br>MFS patients who followed psychological support/psychotherapy | Other: Questionnaire<br>* Rosenberg Self- Esteem scale<br>Other: Questionnaire<br>* Short Form 36 scale<br>Other: Questionnaire<br>* Coping orientation to the problems experienced - New Version in Italian<br>Other: Questionnaire<br>* Outcome Questionnaire - version 42.5<br>|
| MFS_PT-<br>MFS patients who never followed psychological support/psychotherapy | Other: Questionnaire<br>* Rosenberg Self- Esteem scale<br>Other: Questionnaire<br>* Short Form 36 scale<br>Other: Questionnaire<br>* Coping orientation to the problems experienced - New Version in Italian<br>Other: Questionnaire<br>* Outcome Questionnaire - version 42.5<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Questionnaire performance | Statistical analysis between the two experimental groups using independent samples t-tests for continuous variables and associations for categorical variables. Questionnaire scoring: - COPE NVI: scoring between 60 and 240; higher score means better outcome | 8 Months | 
| Questionnaire performance | Statistical analysis between the two experimental groups using independent samples t-tests for continuous variables and associations for categorical variables. Questionnaire scoring: - Short Form-36: scoring between 0 and 100; higher score means better outcome | 8 Months | 
| Questionnaire performance | Statistical analysis between the two experimental groups using independent samples t-tests for continuous variables and associations for categorical variables. Questionnaire scoring: - Rosenberg Self- Esteem scale: scoring between 0 and 30; higher score means better outcome | 8 Months | 
| Questionnaire performance | Statistical analysis between the two experimental groups using independent samples t-tests for continuous variables and associations for categorical variables. Questionnaire scoring: - Outcome questionnaire 42.5: socring between 0 and 180; clinical cut-off value is 64, higher score means worse outcome | 8 Months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Marfan syndrome, Psychological support, Self-report