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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Satisfaction Questionnaires | After enrollment, subjects will be given baseline measures to assess demographics, psychosocial factors, and health literacy. This assessment will occur online via Computerized Assessment Center. Participants will complete the PROMIS 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. Participants will also complete the FFFHL scale. Upon completion of the baseline assessments, the participant will meet with their doctor at the NF clinic for a routine appointment. Post-treatment assessments will be administered immediately after completion of the medical visit. This assessment will evaluate the participant's satisfaction with the appointment in the NF clinic using the MISS and CAHPS surveys. This will be done online via REDCap. |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Questionnaires | Other | All subjects will complete baseline psychological assessments prior to their medical visit. Upon completion of their routine medical visit, subjects will complete a post-test assessment measuring their satisfaction with the visit. |
| Measure | Description | Time Frame |
|---|---|---|
| Patient Reported Outcomes Measurement Information System (PROMIS) | 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. | Baseline (pre-medical visit) |
| Functional, Communicative and Critical Health Literacy (FFFHL) scale | Measures one's health literacy, the capacity of individuals to access, understand, and use health information to make informed and appropriate health-related decisions. | Baseline (pre-medical visit) |
| Medical Interview Satisfaction Scale (MISS) | Measures patient satisfaction with individual doctor-patient consultations. | Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours. |
| Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey | 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. | Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours. |
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| Measure | Description | Time Frame |
|---|---|---|
| Age, Gender, Ethnicity, and Race of Patients with NF | The questionnaire asks for the patient's age, gender, ethnicity, and race as part of the basic demographics. | Baseline (pre-medical visit) |
| Visual Analog Health Scale |
Inclusion Criteria:
Exclusion Criteria:
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Patients diagnosed with neurofibromatosis 1, neurofibromatosis 2, or schwannomatosis
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| Name | Affiliation | Role |
|---|---|---|
| Ana-Maria Vranceanu, PhD | Massachusetts General Hospital | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Massachusetts General Hospital | Boston | Massachusetts | 02114 | United States |
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| ID | Term |
|---|---|
| D017253 | Neurofibromatoses |
| ID | Term |
|---|---|
| D009455 | Neurofibroma |
| D018317 | Nerve Sheath Neoplasms |
| D009380 | Neoplasms, Nerve Tissue |
| D009370 | Neoplasms by Histologic Type |
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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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Measures one's current health on a scale from 0 ("very poor") to 10 ("very good").
| Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours. |
| Learning Disabilities of Patients with NF | This question asks patients if they have ever been diagnosed with a learning disability. | Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours. |
| First Time at NF Clinic | This question asks the patient if it's their first time at the MGH NF clinic. | Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours. |
| D009369 | Neoplasms |
| D009386 | Neoplastic Syndromes, Hereditary |
| D020752 | Neurocutaneous Syndromes |
| D009422 | Nervous System Diseases |
| D020271 | Heredodegenerative Disorders, Nervous System |
| D019636 | Neurodegenerative Diseases |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |