Relationship Between Psychosocial Factors, Health Literacy, Quality of Life and Satisfaction With Medical Visits in Adults With Neurofibromatosis 1, Neurofibromatosis 2, and Schwannomatosis
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 86
- 试验地点
- 1
- 主要终点
- Patient Reported Outcomes Measurement Information System (PROMIS)
研究概览
简要总结
This is a prospective study through the NF clinic at Massachusetts General Hospital that will examine the relationship between psychosocial factors, health literacy, and satisfaction with the medical visit in adults with NF1, NF2, and Schwannomatosis. A total of 89 participants will be enrolled in the study.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Age 18 or older
- •Can read and speak English at or above the 6th grade level
- •Diagnosis of neurofibromatosis type 1, neurofibromatosis type 2, or schwannomatosis
排除标准
- •Severe active or untreated major mental illness that would interfere with study participation, to be determined at the discretion of the study investigator (e.g. untreated psychosis or suicidality)
- •Unable or unwilling to participate
- •Unable or unwilling to complete psychological assessments online via the REDCap or Assessment Center systems.
结局指标
主要结局
Patient Reported Outcomes Measurement Information System (PROMIS)
时间窗: Baseline (pre-medical visit)
A battery of measures assessing: depression, anxiety, anger, fatigue, pain behavior and interference, physical function, satisfaction with discretionary social activities, satisfaction with social roles, and health literacy.
Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey
时间窗: Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours.
Asks patients to report on and evaluate their experiences with health care. This survey covers topics that are important to consumers and focus on aspects of quality that consumers are best qualified to assess, such as the communication skills of providers and ease of access to health care services.
Functional, Communicative and Critical Health Literacy (FFFHL) scale
时间窗: Baseline (pre-medical visit)
Measures one's health literacy, the capacity of individuals to access, understand, and use health information to make informed and appropriate health-related decisions.
Medical Interview Satisfaction Scale (MISS)
时间窗: Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours.
Measures patient satisfaction with individual doctor-patient consultations.
次要结局
未报告次要终点
研究者
Ana-Maria Vranceanu, PhD
Clinical Psychologist
Massachusetts General Hospital