Relationship Between Psychosocial Factors, Health Literacy, Quality of Life and Satisfaction With Medical Visits in Adults With NF

Massachusetts General Hospital86 enrolled

Overview

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.

Study Type

OBSERVATIONAL

Enrollment

Conditions

Neurofibromatosis

Interventions

QuestionnairesOTHER

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.

Eligibility

Sex: ALLMin age: 18 YearsHealthy volunteers:

Medical Language ↔ Plain English

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.

Locations (1)

Massachusetts General Hospital

Boston, Massachusetts, United States

Outcomes

Primary Outcomes

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.

Time frame: 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.

Time frame: Baseline (pre-medical visit)

Medical Interview Satisfaction Scale (MISS)

Measures patient satisfaction with individual doctor-patient consultations.

Time frame: 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.

Time frame: Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours.

Data from ClinicalTrials.gov

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