Psychological Help in Patients With Marfan Syndrome: the Role of Quality of Life, Coping Mechanisms, Psychosocial Aspects and Self-esteem Levels
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 发起方
- 入组人数
- 125
- 试验地点
- 1
- 主要终点
- Questionnaire performance
研究概览
简要总结
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.
详细描述
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Cross Sectional
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Subjects affected by Marfan syndrome;
- •Subjects currently in follow-up at Cardiovascular Genetic Centre, IRCCS Policlinico San Donato;
- •Signed informed consent.
排除标准
- •Subjects with cognitive deficits
结局指标
主要结局
Questionnaire performance
时间窗: 8 Months
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
次要结局
未报告次要终点
研究者
Alessandro Pini
Principal Investigator
IRCCS Policlinico S. Donato