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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:
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:
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| MFS_PT+ | MFS patients who followed psychological support/psychotherapy |
| |
| MFS_PT- | MFS patients who never followed psychological support/psychotherapy |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Questionnaire | Other | Rosenberg Self- Esteem scale |
| |
| 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 |
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Inclusion Criteria:
Exclusion Criteria:
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Subjects with MFS who have requested psychological support/psychotherapy and patients who have never requested psychological support/psychotherapy.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Alessandro Pini, MD | Contact | +390252774705 | alessandro.pini@grupposandonato.it |
| Name | Affiliation | Role |
|---|---|---|
| Alessandro Pini, MD | Cardiovascular-Gentic Centre, IRCCS Policlinico San Donato | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| IRCCS Policlinico San Donato | Recruiting | San Donato Milanese | Lombardy | 20097 | Italy |
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| ID | Term |
|---|---|
| D035583 | Rare Diseases |
| D008382 | Marfan Syndrome |
| ID | Term |
|---|---|
| D020969 | Disease Attributes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D001848 | Bone Diseases, Developmental |
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| ID | Term |
|---|---|
| D011795 | Surveys and Questionnaires |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
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| Questionnaire |
| Other |
Short Form 36 scale |
|
| Questionnaire | Other | Coping orientation to the problems experienced - New Version in Italian |
|
| Questionnaire | Other | Outcome Questionnaire - version 42.5 |
|
| D001847 | Bone Diseases |
| D009140 | Musculoskeletal Diseases |
| D006330 | Heart Defects, Congenital |
| D018376 | Cardiovascular Abnormalities |
| D002318 | Cardiovascular Diseases |
| D006331 | Heart Diseases |
| D000015 | Abnormalities, Multiple |
| D000013 | Congenital Abnormalities |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D030342 | Genetic Diseases, Inborn |
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |