Resiliency Training for Adults With Neurofibromatosis Via Live Videoconferencing
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Neurofibromatoses
- Sponsor
- Massachusetts General Hospital
- Enrollment
- 228
- Locations
- 1
- Primary Endpoint
- Change in Physical Quality of Life
- Status
- Completed
- Last Updated
- 4 months ago
Overview
Brief Summary
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.
Detailed Description
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.
Investigators
Ana-Maria Vranceanu, PhD
Clinical Psychologist
Massachusetts General Hospital
Eligibility Criteria
Inclusion Criteria
- •Has a diagnosis of NF1, NF2, or Schwannomatosis
- •18 years of age or older
- •Is capable of completing and fully understanding the informed consent process, study procedures, and study assessments in English
- •At least 6th grade self-reported reading level
- •Self-reported difficulties coping with stress and NF-symptoms
- •Score of 6 or higher on Perceived Stress Scale 4-Item (PSS-4)
Exclusion Criteria
- •Has major medical comorbidity not NF related expected to worsen in the next 12 months
- •Recent (within past 3 months) change in antidepressant medication
- •Recent (within past 3 months) participation in cognitive behavioral therapy or relaxation therapy
- •Has significant mental health diagnosis requiring immediate treatment (e.g., bipolar disorder, psychotic disorder, active substance use dependence)
- •Unable or unwilling to complete assessments electronically via REDCap
- •Unable or unwilling to participate in group videoconferencing sessions
Outcomes
Primary Outcomes
Change in Physical Quality of Life
Time Frame: 0 Weeks, 8 Weeks, 6 Months, 12 Months
World Health Organization Quality of Life Brief (WHOQOL-BREF); 4-20; higher score indicates higher QoL
Change in Psychological Quality of Life
Time Frame: 0 Weeks, 8 Weeks, 6 Months, 12 Months
World Health Organization Quality of Life Brief (WHOQOL-BREF); 4-20; higher score indicates higher QoL
Secondary Outcomes
- Pain Interference(0 Weeks, 8 Weeks, 6 Months, 12 Months)
- Stress(0 Weeks, 8 Weeks, 6 Months, 12 Months)
- Social Quality of Life(0 Weeks, 8 Weeks, 6 Months, 12 Months)
- Environmental Quality of Life(0 Weeks, 8 Weeks, 6 Months, 12 Months)
- Depression(0 Weeks, 8 Weeks, 6 Months, 12 Months)
- Coping Strategies(0 Weeks, 8 Weeks, 6 Months, 12 Months)
- Mindfulness(0 Weeks, 8 Weeks, 6 Months, 12 Months)
- Empathy(0 Weeks, 8 Weeks, 6 Months, 12 Months)
- Anxiety(0 Weeks, 8 Weeks, 6 Months, 12 Months)
- Gratitude(0 Weeks, 8 Weeks, 6 Months, 12 Months)
- Optimism(0 Weeks, 8 Weeks, 6 Months, 12 Months)
- Social Support(0 Weeks, 8 Weeks, 6 Months, 12 Months)
- Pain Intensity(0 Weeks, 8 Weeks, 6 Months, 12 Months)