NeurofibromatosisNCT02298270
Resiliency Training for Patients With Neurofibromatosis Via Videoconferencing With Skype
A study testing The Relaxation Response Resiliency Program (3RP) via Skype in people with Neurofibromatosis and Neurofibromatosis I, run by Massachusetts General Hospital at 1 site in United States.
Trial summary
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. Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Neurofibromatosis, Neurofibromatosis I, Neurofibromatosis 2
- What is being tested?
- The Relaxation Response Resiliency Program (3RP) via Skype
- Type of treatment
- Lifestyle or therapy programme
- Could I receive a placebo?
- Yes, some participants may receive a placebo
- How many people
- 65 participants
- Where
- 1 siteUnited States
- Study dates
- Mar 2014to Jul 2015
- Phase
- Interventional
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Who may be able to join
- Age 18 or older
- Can read and speak English at or above the 6th grade level
- Diagnosis of neurofibromatosis type 1, neurofibromatosis type 2, or schwannomatosis
Who cannot join
- 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)
- Recent (within past 3 months) change in antidepressant medication
- Use of formal relaxation training (including past participation in a mind-body program), currently or in the past 6 months.
- Unable or unwilling to sign the informed consent documents
- Unable or unwilling to complete psychological assessments online via the REDCap system.
- Unable or unwilling to participate in an intervention delivered via videoconferencing with Skype.
Trial locations and contacts
1 site in 1 country.
United States1 site
Massachusetts General Hospital
Boston, Massachusetts, 02140
About this study
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.
- Being tested
- The Relaxation Response Resiliency Program (3RP) via Skype
- Keywords
- Neurofibromatosis, NF I, NF 2, Schwannomatosis, Stress Management, Resiliency, Skype
- Medical subject headings
- Neurofibromatoses, Neurofibromatosis 1, Neurofibromatosis 2, Schwannomatosis
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
The Relaxation Response Resiliency Program (3RP) via SkypeBehavioural
8-week group intervention, delivered via Skype, teaching relaxation and psychological resiliency enhancing skills. Topics include the relaxation response, meditation, and yoga.
| Study group | Role | What they receive |
|---|---|---|
| Relaxation Response Resiliency Program | Experimental | Participants will receive an 8-week behavioral intervention which teaches stress management and psychological resiliency-enhancing skills. Receives: Behavioral: The Relaxation Response Resiliency Program (3RP) via Skype |
| Health Education | Placebo comparator | 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. Receives: Behavioral: The Relaxation Response Resiliency Program (3RP) via Skype |
What is being measured
The primary outcome is the main question the study is designed to answer.
Satisfaction with Life (SWL)
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.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
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.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Secondary outcomes (17)
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.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
The Pain Catastrophizing Scale (PCS)
The Pain Catastrophizing Scale (PCS) is widely used to assess cognitive and affective responses to pain and to evaluate pain management program outcomes.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Pain Numerical Rating Scale (Pain NRS)
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.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Patient Health Quesionnaire (PHQ)
The PHQ measures symptoms of depression and functional impairment.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Brief Pain Inventory (BPI)
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).
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Cognitive and Affective Mindfulness Scale (CAMS)
The CAMS measures the degree to which individuals experience their thoughts and feelings.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Posttraumatic Growth Inventory (PGI)
The PGI is an instrument for assessing positive outcomes reported by persons who have experienced traumatic events.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Interpersonal Reactivity Index (IRI)
The IRI assesses the cognitive and affective dimensions of empathy.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Distress Analogue Scales
The Distress Analogue Scales measure participants' levels of stress, coping, distress, and discomfort.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32). Also administered at mid-interevention, before each group session.
Epworth Sleepiness Scale (ESS)
The Epworth Sleepiness Scale (ESS) has been widely used to assess a person's average level of daytime sleepiness in daily life.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Measure of Current Status (MOCS-A)
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.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Life Orientation Test (LOT) Optimism Scale
The LOT Optimism Scale measures individual differences in generalized optimism versus pessimism.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
The Gratitude Questionnaire (GQ-6)
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.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Functional Assessment of Chronic Illness Therapy- Fatigue Scale (FACIT-Fatigue)
The FACIT-Fatigue measures participants' tiredness, weakness, and difficulty conducting usual activities due to fatigue.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Functional Assessment of Chronic Illness Therapy- Spirituality Scale (FACIT-Sp)
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.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Medical Outcomes Study (MOS) Social Support Survey
The MOS Social Support Survey measures various dimensions of social support.
Measured: 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.
Measured: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted21 Nov 2014 (estimated)
- Study startMar 2014
- Primary completionJul 2015
- Study completionJul 2015
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for NeurofibromatosisStudies of the same condition, open and under way.
- More trials run by Massachusetts General HospitalThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Supportive care
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Masking
- Single blind
- Who is masked
- Participant
- Enrolment
- 65 participants (actual)
Sponsor and investigators
- Lead sponsor
- Massachusetts General Hospital
- Sponsor type
- University, hospital or other
- Collaborators
- The Children's Tumor Foundation
- Responsible party
- Principal investigator, Ana-Maria Vranceanu, PhD, Massachusetts General Hospital
- Investigators
- Ana-Maria Vranceanu, PhD, Principal investigator, MGH
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT02298270
- Sponsor's protocol ID
- 2013P002605a
- Status last verified
- Jun 2016
- First submitted
- 17 Nov 2014
- Last updated
- 23 Jun 2016
- Results posted
- No
- Data monitoring committee
- No
Study at a glance
From the registry record, last updated by the sponsor on 23 Jun 2016. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Resiliency Training for Patients With Neurofibromatosis Via Videoconferencing With Skype
- ClinicalTrials.gov ID
- NCT02298270
- Acronym / sponsor ID
- 2013P002605a
- Keywords
- Neurofibromatosis, NF I, NF 2, Schwannomatosis, Stress Management, Resiliency, Skype
- Study type
- Interventional
- Recruitment status
- Completed
- Enrolment
- 65 participants (actual)
- Lead sponsor
- Massachusetts General HospitalUniversity, hospital or other
- Collaborators
- The Children's Tumor Foundation
- Study start
- Mar 2014
- Primary completion
- Jul 2015 (actual)
- Study completion
- Jul 2015 (actual)
- First posted
- 21 Nov 2014 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Study design
- Primary purpose
- Supportive care
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Masking
- Single blind (participant)
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| Relaxation Response Resiliency Program | Experimental | Behavioral: The Relaxation Response Resiliency Program (3RP) via SkypeParticipants will receive an 8-week behavioral intervention which teaches stress management and psychological resiliency-enhancing skills. |
| Health Education | Placebo comparator | Behavioral: The Relaxation Response Resiliency Program (3RP) via SkypeParticipants 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. |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
Key inclusion criteria (3 listed)
- Age 18 or older
- Can read and speak English at or above the 6th grade level
- Diagnosis of neurofibromatosis type 1, neurofibromatosis type 2, or schwannomatosis
Key exclusion criteria (6 listed)
- 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)
- Recent (within past 3 months) change in antidepressant medication
- Use of formal relaxation training (including past participation in a mind-body program), currently or in the past 6 months.
- Unable or unwilling to sign the informed consent documents
- Unable or unwilling to complete psychological assessments online via the REDCap system.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| The Relaxation Response Resiliency Program (3RP) via Skype8-week group intervention, delivered via Skype, teaching relaxation and psychological resiliency enhancing skills. Topics include the relaxation response, meditation, and yoga. | Behavioural | Health Education, Relaxation Response Resiliency Program |
Primary outcome
Satisfaction with Life (SWL)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
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.
Quality of Life (WHOQOL-BREF)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
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.
17 secondary outcomes
Perceived Stress Scale (PSS-10)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
The Pain Catastrophizing Scale (PCS)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Pain Numerical Rating Scale (Pain NRS)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Patient Health Quesionnaire (PHQ)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Brief Pain Inventory (BPI)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Cognitive and Affective Mindfulness Scale (CAMS)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Posttraumatic Growth Inventory (PGI)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Interpersonal Reactivity Index (IRI)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Distress Analogue Scales
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32). Also administered at mid-interevention, before each group session.
Epworth Sleepiness Scale (ESS)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Measure of Current Status (MOCS-A)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Life Orientation Test (LOT) Optimism Scale
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
The Gratitude Questionnaire (GQ-6)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Functional Assessment of Chronic Illness Therapy- Fatigue Scale (FACIT-Fatigue)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Functional Assessment of Chronic Illness Therapy- Spirituality Scale (FACIT-Sp)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Medical Outcomes Study (MOS) Social Support Survey
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
The 14-Item Resiliency Scale (RS-14)
Time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 23 Jun 2016.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Ana-Maria Vranceanu, PhD principal investigator
MGH
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing The Relaxation Response Resiliency Program (3RP) via Skype in people with Neurofibromatosis and Neurofibromatosis I, run by Massachusetts General Hospital at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 6 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 23 Jun 2016. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. Some participants in this study may receive a placebo. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Satisfaction with Life (SWL) (time frame: Change between Baseline (week 0), Post-intervention (week 8) and Follow Up (week 32)). The study lists 2 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 23 Jun 2016.