Effects of a mind-body program on symptoms of depression and perceived stress among adults with neurofibromatosis type 2 who are deaf: A live-video randomized controlled trial.

INTRODUCTION: Neurofibromatosis type 2 (NF2) is a rare, progressive and incurable genetic disorder associated with progressive hearing loss and eventual deafness. As a group, patients with NF report high levels of stress and depressive symptoms. However, no studies have explored improvement in these symptoms after psychosocial interventions. We have previously shown that a mind-body program tailored to adults with NF2 who are deaf (the Relaxation Response and Resiliency Program for Deaf NF2, d3RP-NF2) improves quality of life and resiliency over and above a Health Enhancement program when both are delivered via live-video and assisted by Communication Access Realtime Translation (CART). Here we tested the effects of the programs on depression and perceived stress. METHODS: Forty-five patients with NF2 and significant hearing loss were randomized to the d3RP-NF2 or Health-Enhancement program and completed measures of depression (PHQ-9) and perceived stress (PSS-10) at baseline, post-intervention, and six-month follow-up. RESULTS: Patients randomized to the d3RP-NF2 program, but not to the control condition, experienced significant decreases on both measures from baseline to post-test, which were maintained at follow-up (within group tests). However, improvements following the d3RP-NF2 program was not significantly higher than those observed in the control group (between group tests). CONCLUSION: Results provide the first evidence of improvement in symptoms of depression and perceived stress among deaf patients living with NF2 who participate in a virtual mind-body program.

"Cooling of the mind": Assessing the relevance of mindfulness training among people living with HIV using alcohol and other substances in South Africa.

RATIONALE: "Thinking too much" is a cultural idiom of distress identified across sub-Saharan Africa, including among people living with HIV (PLWH), which is associated with depression, substance use, and HIV medication nonadherence. Despite the relevance of mindfulness training to address thinking too much, improve HIV-related outcomes, and reduce substance use, efforts to adapt mindfulness training for this context and underserved populations more broadly have been limited. OBJECTIVE: We explored in this context: (a) the experience of thinking too much among PLWH struggling with adherence and substance use; (b) the appropriateness of mindfulness training to address thinking too much; and (c) potential barriers and facilitators to implementing mindfulness training. METHOD: We conducted semi-structured interviews with patients (n = 19) and providers (n = 11) at two clinics in a peri-urban area of Cape Town. Guided by the ADAPT-ITT model, we included an experiential mindfulness practice and participants shared their observations and descriptions of the intervention in the local language (isiXhosa). RESULTS: Participants found mindfulness relevant, culturally salient, and appropriate for refocusing the mind. Findings provide unique language offered by participants to tailor mindfulness training in the future (e.g., "hearing your veins," "cooling of the mind"). Participants identified potential implementation barriers, including lack of privacy, and facilitators to guide future adaptations. CONCLUSIONS: More research is needed to adapt and increase access to mindfulness training in resource-limited settings globally, while also maintaining treatment integrity and fidelity.

Cultivating resiliency in patients with neurofibromatosis 2 who are deafened or have severe hearing loss: a live­video randomized control trial.

INTRODUCTION: Patients with NF2 who are deaf or have significant hearing loss face numerous and unique challenges which lead to poor quality of life, and thus may benefit from resiliency programs. METHODS: We performed secondary data analyses on a single blind, randomized controlled trial of an 8 week mind-body resiliency program (the Relaxation Response and Resiliency program for Deaf NF2; d3RP-NF2) versus a health education control (Health Enhancement Program for Deaf NF2;dHEP-NF2) which showed improvement in quality of life (Funes in JAMA 2019, https://doi.org/10.1007/s11060-019-03182-3). Here we report on improvements in resiliency factors (i.e. optimism, gratitude, perceived social support, mindfulness, and perceived coping abilities) assessed at baseline, post-test and 6-month follow-up. Both programs were delivered via Skype using Communication Access Real-Time Translation. RESULTS: Patients who were randomized to the d3RP-NF2 program exhibited significant improvements from baseline to post-program in gratitude (Mdifference = 4.04, 95% CI 1.58-6.50; p = 0.002), perceived social support (Mdifference = 16.36, 95% CI 9.20-23.51; p < 0.001), mindfulness (Mdifference = 4.02, 95% CI 1.10-6.94; p = 0.008), perceived coping (Mdifference = 15.25, 95% CI 10.21-20.28; p < 0.001), and a non-significant trend of improvement in optimism (Mdifference = 1.15, 95% CI -0.14-12.44; p = 0.079). These improvements were all maintained through the 6-month follow up. Improvements in perceived coping (Mdifference = 12.34, 95% CI 4.75-19.93; p = 0.002), social support (Mdifference = 13.11, 95% CI 2.19-24.03; p = 0.02), and gratitude (Mdifference = 4.59, 95% CI 0.83-8.36; p = 0.018) were over and above the changes observed in those randomized to dHEP-NF2. CONCLUSION: The d3RP-NF2 sustainably improves multiple dimensions of resiliency. Promoting resiliency may be of utmost importance for this uderserved population.

First report of quality of life in adults with neurofibromatosis 2 who are deafened or have significant hearing loss: results of a live-video randomized control trial.

PURPOSE: To test the feasibility, acceptability, and preliminary efficacy of a mind-body program for patients with neurofibromatosis 2 (NF2) who are deaf or have significant hearing loss (d3RP-NF2) against an attention placebo control (dHEP-NF2) in a single-blind randomized control trial. Both were delivered using Communication Access Real-Time Translation and live group videoconferencing. METHODS: Forty-five adults with NF2 were randomized. Co-primary outcomes were physical quality of life (QoL) and psychological QoL and secondary outcomes were social QoL and environmental QoL, all measured with the World Health Organization Quality of Life Abbreviated Instrument (WHOQOL-BREF). Assessments were conducted at baseline, post-treatment, and six-month follow-up. RESULTS: Forty-one participants (91%) completed the intervention, and 29 (64%) completed the six-month follow up. Participants in the d3RP-NF2 showed significantly greater improvements from baseline to post-treatment on physical QoL (14.79, 95% CI 5.41-24.18; p ≤ 0.001), psychological QoL (18.77, 95% CI 7.09-30.44, p ≤ 0.001), and environmental QoL (13.25, 95% CI 1.10-25.39, p = 0.03) compared to the dHEP-NF2. Social QoL also significantly increased in the d3RP-NF2 (16.32, 95% CI 6.66-25.97, p = 0.001), but improvement was not beyond the dHEP-NF2. Gains in QoL were clinically meaningful and maintained at the 6-month follow-up for d3RP-NF2 participants across all QoL domains. There were more treatment responders in the d3RP-NF2 compared to the dHEP-NF2. CONCLUSIONS: The d3RP-NF2 was well accepted, highly feasible, and resulted in sustained improvements in QoL in patients with NF2 who are deaf or have significant hearing loss.