Resiliency Training for Patients With NF2 Via Videoconferencing With Skype

Massachusetts General Hospital45 enrolled

Overview

The aim of this study is to determine, whether the 3RP is feasible, accepted and efficacious and durable when delivered via Skype to patients with neurofibromatosis type 2 (NF2) who are deaf or have severe hearing loss using Communication Access Realtime Translation (CART) and/or American Sign Language (ASL). This will be a substudy of the IRB-approved protocol #2013P002605. It is the same study except it is looking at a particular sub-population: patients with NF2 who are hard of hearing.

Study Type

INTERVENTIONAL

Allocation

RANDOMIZED

Purpose

TREATMENT

Masking

SINGLE

Enrollment

Conditions

Neurofibromatosis 2

Interventions

Stress Management Group 1BEHAVIORAL

Subjects will attend group stress management sessions via Skype once weekly for 8 weeks and learn stress/NF symptoms managements techniques.

Stress Management Group 2BEHAVIORAL

Subjects will attend group stress management sessions via Skype once weekly for 8 weeks and learn stress/NF symptoms managements techniques.

Eligibility

Sex: ALLMin age: 18 Years

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. Patients with NF2 who are deaf or have severe hearing loss. 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. Recent (within past 3 months) change in antidepressant medication 3. Use of formal relaxation training (including past participation in a mind-body program), currently or in the past 6 months. 4. Unable or unwilling to sign the informed consent documents 5. Unable or unwilling to complete psychological assessments online via the REDCap system. 6. Unable or unwilling to participate in an intervention delivered via videoconferencing with Skype. 7. Unwilling to use either CART or ASL for communication during the Skype groups.

Locations (1)

Massachusetts General Hospital

Boston, Massachusetts, United States

Outcomes

Primary Outcomes

Quality of Life (WHOQOL-BREF)

The WHOQOL-BREF comprises of 26 items which measure the following broad domains: physical health, psychological health, social relationships, and environment. The WHOQOL-BREF is a shorter version of the original instrument that may be more convenient for use in large research studies or clinical trials.

Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32 and week 64)

Penn Acoustic Neuroma Quality-of Life Scale (PANQOL)

The PANQOL measures quality of life specifically for patients with NF2.

Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32 and week 64)

Secondary Outcomes

Perceived Stress Scale (PSS-10)

The PSS is a widely used psychological instrument for the measurement of the perception of stress. This 10-itam scale is designed to measure the degree to which situations in one's life are appraised, or considered stressful. The scores range from 0-40, with a higher score indicating higher perceived stress. Items were designed to detect how unpredictable, uncontrollable and overloaded respondents find their lives.

Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)

The 14-Item Resiliency Scale (RS-14)

The RS-14 measures stress coping ability in the face of adversity.

Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)

Patient Health Questionnaire (PHQ)

The PHQ measures symptoms of depression and functional impairment.

Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)

Data from ClinicalTrials.gov

This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.