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Psychological Support in Adult Patients With Marfan Syndrome

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

Status
Recruiting
Phases
Unknown
Study type
Observational
Source
ClinicalTrials.gov
Registry ID
NCT05712577
Acronym
MARFANPSY
Enrollment
125
Registered
2023-02-03
Start date
2023-01-09
Completion date
2024-10-09
Last updated
2024-01-12

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Marfan Syndrome, Psychology, Social, Rare Diseases

Keywords

Marfan syndrome, Psychological support, Self-report

Brief 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.

Detailed 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.

Interventions

OTHERQuestionnaire

Rosenberg Self- Esteem scale

Sponsors

IRCCS Policlinico S. Donato
Lead SponsorOTHER

Study design

Observational model
COHORT
Time perspective
CROSS_SECTIONAL

Eligibility

Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No

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

Design outcomes

Primary

MeasureTime frameDescription
Questionnaire performance8 MonthsStatistical 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

Countries

Italy

Contacts

Primary ContactAlessandro Pini, MD
alessandro.pini@grupposandonato.it+390252774705

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026