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

Stress Management Group 1

Stress Management Group 2

Ana-Maria Vranceanu, PhD

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.

Resiliency Training for Patients With NF2 Via Videoconferencing With Skype

Resiliency Training for Patients With Neurofibromatosis Via Videoconferencing With Skype

Measures how likely and how motivated the participants is to attend the next session.

This questionnaire asks subjects with NF2 to report their date of birth, age, gender, race, ethnicity, marital status, highest level of education, hearing status, and primary employment status over the last 12 months.

Measures how much the participant believes the intervention will work.

Measures how satisfied the participant is with the intervention.

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.

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

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.

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

The PHQ measures symptoms of depression and functional impairment.

The CAMS measures the degree to which individuals experience their thoughts and feelings.

The LOT Optimism Scale measures individual differences in generalized optimism versus pessimism.

The GQ-6 revised is a 6-item measure that assesses individual differences in the proneness to experience gratitude in daily life. Scores range from 6-42, with a higher score indicating a greater sense of gratitude.

The MOCS-A is a 13-item measure assessing participants' current self-perceived status on several skills such as: the ability to relax at will, recognize stress-inducing situations, restructure maladaptive thoughts, be assertive about needs, and choose appropriate coping responses as needed. Responses are made on a 7-point scale with higher scores reflecting higher life satisfaction.

The MOS Social Support Survey measures various dimensions of social support.

The Children's Tumor Foundation

Massachusetts General Hospital

Clinical Psychologist

Ana-Maira Vranceanu, PhD

The aim of this research is to adapt the NF-specific adult version of the Skype 3RP for use with adolescents, and to test its feasibility, acceptability, and preliminary effect in improving quality of life, and in decreasing stress and psychological distress.

Resiliency Training for Adolescent Neurofibromatosis Patients Via Videoconferencing With Skype

Measures how much the participant believes the intervention will work

Measures how satisfied the participant is with the intervention

Situations in one's life over the past month/week are appraised as stressful

Symptoms of depression and functional impairment

How much pain has interfered with their life

Assesses mindfulness in children and adolescents

Assesses the cognitive and affective dimensions of empathy

Measures how likely one is to doze off or sleep in certain situations

Assesses individual differences in the proneness to experience gratitude in daily life

Individual differences in generalized optimism versus pessimism

Spiritual well-being (sense of meaning in life and the sense of strength in one's faith) over the past 7 days

Measures recent thinking about the various dimensions of social support.

Measures participants' current self-perceived status on several skills that are targeted by the intervention: the ability to relax at will, recognize stress-inducing situations, restructure maladaptive thoughts, be assertive about needs, and choose appropriate coping responses as needed.

A brief measure for assessing generalized anxiety disorder

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization	Link
Resiliency Training for Patients With NF2 Via Videoconferencing With Skype	NCT02811718	Neurofibromatos...	Stress Manageme... Stress Manageme...	18 Years -	Massachusetts General Hospital
Resiliency Training for Adolescent Neurofibromatosis Patients Via Videoconferencing With Skype	NCT02387177	Neurofibromatos...	Stress Manageme... Stress Manageme...	12 Years - 17 Years	Massachusetts General Hospital

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