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

The Stress and Symptom Management Program 1 (SMP1) introduces and reinforces stress and symptom management skills. The program consists of 8 weekly sessions (90 minutes each), delivered through live videoconferencing.

The Stress and Symptom Management Program 2 (SMP2) introduces and reinforces stress and symptom management skills. The program consists of 8 weekly sessions (90 minutes each), delivered through live videoconferencing.

Stress and Symptom Management Program 1

Stress and Symptom Management Program 2

Ana-Maria Vranceanu, PhD

Christopher J Funes, MS

The aims of this study are to compare the effect and durability of two stress and symptom management programs tailored for patients with neurofibromatosis on quality of life and psychosocial functioning.

The aims of this study are to compare the effect of two stress and symptom management programs tailored for patients with neurofibromatosis on quality of life and psychosocial functioning. We will also examine the degree to which treatment-dependent improvements in quality of life are mediated by improvements in depression, anxiety, distress, mindfulness, gratitude, social support, empathy, optimism, coping, pain intensity and pain interference.

Resiliency Training for Adults With Neurofibromatosis Via Live Videoconferencing

World Health Organization Quality of Life Brief (WHOQOL-BREF); 4-20; higher score indicates higher QoL

Patient Health Questionnaire 9-Item (PHQ-9); 0-27; higher score indicates more symptoms of depression

Generalized Anxiety Disorder 7-Item (GAD-7); 0-21; higher score indicates more symptoms of anxiety

Medical Outcome Study Social Support Survey (MOS); 18-90; higher scores indicate greater perceived social support

Gratitude Questionnaire 6-Item (GQ-6); 6-42; higher scores indicate greater gratitude

Life Orientation Test-Revised (LOT-R); 0-40; higher scores indicate greater optimism

Measure of Current Status Part A (MOCS-A); 0-52; higher scores indicate greater perceived ability to cope

Cognitive and Affective Mindfulness Scale (CAMS); 10-40; higher scores indicate greater mindfulness

Interpersonal Reactivity Index (IRI) Empathy Subscale; 7-Items; 0-28; higher scores indicate greater empathy

Graded Chronic Pain Scale (GCPS); 0-100; higher scores indicate greater pain intensity

PROMIS Pain Interference; 8-40; higher scores indicate more pain interference

Perceived Stress Scale 10-Item (PSS-10); 0-21; higher scores indicate greater levels of perceived stress

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization	Link
Resiliency Training for Adults With Neurofibromatosis Via Live Videoconferencing	NCT03406208	Neurofibromatos... Neurofibromatos... Neurofibromatos... Schwannomatosis	Stress and Symp... Stress and Symp...	18 Years -	Massachusetts General Hospital
Resiliency Training for Adults With Neurofibromatosis Via Live Videoconferencing	NCT03406208	Neurofibromatos... Neurofibromatos... Neurofibromatos... Schwannomatosis	Stress and Symp... Stress and Symp...	18 Years -	Massachusetts General Hospital

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