Neurofibromatosis
Conditions
Brief summary
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.
Interventions
OTHERQuestionnaires
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.
Sponsors
Massachusetts General Hospital
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
1. Age 18 or older 2. Can read and speak English at or above the 6th grade level 3. Diagnosis of neurofibromatosis type 1, neurofibromatosis type 2, or schwannomatosis
Exclusion criteria
1. 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) 2. Unable or unwilling to participate 3. Unable or unwilling to complete psychological assessments online via the REDCap or Assessment Center systems.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey | 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. |
| Patient Reported Outcomes Measurement Information System (PROMIS) | 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. |
| Functional, Communicative and Critical Health Literacy (FFFHL) scale | 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) | 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. |
Other
| Measure | Time frame | Description |
|---|---|---|
| Age, Gender, Ethnicity, and Race of Patients with NF | Baseline (pre-medical visit) | The questionnaire asks for the patient's age, gender, ethnicity, and race as part of the basic demographics. |
| Visual Analog Health Scale | Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours. | Measures one's current health on a scale from 0 (very poor) to 10 (very good). |
| Learning Disabilities of Patients with NF | Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours. | This question asks patients if they have ever been diagnosed with a learning disability. |
| First Time at NF Clinic | Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours. | This question asks the patient if it's their first time at the MGH NF clinic. |
Countries
United States
Outcome results
None listed