Neoplasms

Nervous System Diseases

Diseases and Abnormalities at or Before Birth

All Conditions

Ear, Nose, and Throat Diseases

Symptoms and General Pathology

Skin and Connective Tissue Diseases

Rare Diseases

Neurofibromatoses

Neurofibromatosis 1

Neurofibroma

Neurofibromatosis 2

Nerve Sheath Neoplasms

Neoplasms, Nerve Tissue

Neoplasms by Histologic Type

Syndrome

Neoplastic Syndromes, Hereditary

Neurocutaneous Syndromes

Heredodegenerative Disorders, Nervous System

Neurodegenerative Diseases

Genetic Diseases, Inborn

Peripheral Nervous System Diseases

Neuromuscular Diseases

Nervous System Neoplasms

Peripheral Nervous System Neoplasms

Neuroma

Neuroma, Acoustic

Neurilemmoma

Neuroendocrine Tumors

Neuroectodermal Tumors

Neuroectodermal Tumors, Primitive

Neoplasms, Germ Cell and Embryonal

Vestibulocochlear Nerve Diseases

Retrocochlear Diseases

Ear Diseases

Otorhinolaryngologic Diseases

Otorhinolaryngologic Neoplasms

Cranial Nerve Diseases

Neurofibromatosis

Neurofibromatosis Type 1

Neurofibromatosis Type 2

Schwannomatosis

Schwannoma

Neuroendocrine Tumor

Neuroepithelioma

Participants will receive an 8-week behavioral intervention which teaches stress management and psychological resiliency-enhancing skills.

Participants will receive and 8-week general stress and health education program, with none of the active relaxation and resiliency-based components being tested in the experimental condition.

8-week group intervention, delivered via Skype, teaching relaxation and psychological resiliency enhancing skills. Topics include the relaxation response, meditation, and yoga.

The Relaxation Response Resiliency Program (3RP) via Skype

Ana-Maria Vranceanu, PhD

This study tests the efficacy of an 8-week, Skype-based, group resiliency training intervention (The Relaxation Response Resiliency Program) for improving psychological stress in patients with Neurofibromatosis. A control group will receive a general health education curriculum. The investigators hypothesize that patients will improve on measures of psychological stress as a result of the resiliency program.

A substudy (Unique Protocol ID: 2013P002605b) has been approved to test this study on a sub-population: patients with NF2 who are hard of hearing.

Resiliency Training for Patients With Neurofibromatosis Via Videoconferencing With Skype

The Satisfaction with Life (SWL) scale is a reliable and valid 5-item self-report measure of global life satisfaction. Responses are made on a 7-point scale with higher scores reflecting higher life satisfaction.

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 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 Pain Catastrophizing Scale (PCS) is widely used to assess cognitive and affective responses to pain and to evaluate pain management program outcomes.

The Pain NRS is a scale for patient self-reporting measurements of pain. The measure was depicted by REINS as a standard measure to use in Neurofibromatosis clinical trials.

The PHQ measures symptoms of depression and functional impairment.

The Brief Pain Inventory (BPI) allows patients to rate the severity of their pain (BPI-S) and the degree to which their pain interferes with common dimensions of feeling and function (BPI-I).

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

The PGI is an instrument for assessing positive outcomes reported by persons who have experienced traumatic events.

The IRI assesses the cognitive and affective dimensions of empathy.

The Distress Analogue Scales measure participants' levels of stress, coping, distress, and discomfort.

The Epworth Sleepiness Scale (ESS) has been widely used to assess a person's average level of daytime sleepiness in daily life.

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 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 FACIT-Fatigue measures participants' tiredness, weakness, and difficulty conducting usual activities due to fatigue.

The FACIT-Sp measures participants' spiritual well-being (sense of meaning in life and the sense of strength in one's faith) over the past 7 days.

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

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

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Resiliency Training for Patients With Neurofibromatosis Via Videoconferencing With Skype	NCT02298270	Neurofibromatos... Neurofibromatos... Neurofibromatos... Schwannomatosis	The Relaxation ...	18 Years -	Massachusetts General Hospital
Resiliency Training for Patients With Neurofibromatosis Via Videoconferencing With Skype	NCT02298270	Neurofibromatos... Neurofibromatos... Neurofibromatos... Schwannomatosis	The Relaxation ...	18 Years -	Massachusetts General Hospital
Resiliency Training for Patients With Neurofibromatosis Via Videoconferencing With Skype	NCT02298270	Neurofibromatos... Neurofibromatos... Neurofibromatos... Schwannomatosis	The Relaxation ...	18 Years -	Massachusetts General Hospital

Spots Global Cancer Trial Database for the relaxation response resiliency program (3rp) via skype