Does gender moderate resiliency variables and posttraumatic stress symptoms in informal caregivers of neurocritical care patients? An exploratory study.

We examined gender differences between resiliency factors (i.e. mindfulness, self-efficacy, coping, intimate care, and caregiver preparedness) and posttraumatic stress symptoms (PTSS) in informal caregivers of patients in the neuroscience intensive care unit (Neuro-ICU). Ninety-two informal caregivers were enrolled during patients' hospitalization and completed resiliency measures at baseline, and a PTSS measure at baseline, 3 and 6 months. We conducted five ANCOVAs to explore gender and resiliency on PTSS. No significant main effects of gender on PTSS were observed across time points. However, main effects were seen for resiliency on PTSS at baseline for informal caregivers with high (vs. low) mindfulness, coping, and self-efficacy. Gender moderated the association between mindfulness and PTSS (i.e. high mindfulness at baseline was associated with lower PTSS in males compared to females at 3 months) and intimate care and PTSS (high intimate care at baseline was associated with lower PTSS in males than females at 6 months; high intimate care at baseline for females was associated with lower PTSS at 6 months than females with low intimate care). Overall, we observed associations among informal caregivers' gender, resiliency, and PTSS, with males particularly benefitting from mindfulness and intimate care. These findings hold value for future inquiry into gender differences in this population with possible clinical implications.

The impact of a virtual mind-body program on resilience factors among international English-speaking adults with neurofibromatoses: secondary analysis of a randomized clinical trial.

PURPOSE: To test the effects of the Relaxation Response Resiliency Program - Neurofibromatosis (3RP-NF), a mind-body resilience program for people with NF, on resilience factors from baseline to post-treatment and 6- and 12-month follow-up. METHODS: This is a secondary analysis of a fully powered randomized clinical trial (RCT) of 3RP-NF and health education control (HEP-NF). We recruited adults with NF1, NF2, or schwannomatosis who reported stress or difficulty coping with NF symptoms. Both conditions received 8 weekly 90-minute group sessions; 3RP-NF focused on building resilience skills. We measured resilience factors via the Measure of Current Status-A (adaptive coping), Cognitive and Affective Mindfulness Scale-Revised (mindfulness), Gratitude Questionnaire-6 (gratitude), Life Orientation Test Optimism Scale (optimism), and Medical Outcomes Study Social Support Survey (perceived social support) at baseline, post-intervention, and 6- and 12-month follow-up. We used linear mixed models with completely unstructured covariance across up to four repeated measurements (baseline, post-treatment, and 6- and 12-month follow-up) to investigate treatment effects on resilience factors. RESULTS: We enrolled 228 individuals (Mage=42.7, SD = 14.6; 74.5% female; 87.7% White; 72.8% NF1, 14.0% NF2, 13.2% schwannomatosis). Within groups, both 3RP-NF and HEP-NF showed statistically significant improvements in all outcomes across timepoints. 3RP-NF showed significantly greater improvement in adaptive coping compared to HEP-NF from baseline to post-intervention and baseline to 6 months (Mdifference= 0.29; 95% CI 0.13-0.46; p < 0.001; Mdifference= 0.25; 95% CI 0.07-0.33; p = 0.005); there were no other between-group differences amongst the remaining resilience factors. CONCLUSION: 3RP-NF showed promise in sustainably improving coping abilities amongst people with NF. TRIAL REGISTRATION INFORMATION: ClinicalTrials.gov Identifier: NCT03406208. Registration submitted December 6, 2017, first patient enrolled October 2017.

Occurrence and Severity of Suicidal Ideation in Adults With Neurofibromatosis Participating in a Mind-Body RCT.

BACKGROUND: Emotional distress can lead to suicidal ideation and potentially suicide completion, yet there is very little literature on suicidal ideation in individuals with a diagnosis of neurofibromatosis (NF; NF1, NF2, and schwannomatosis). OBJECTIVE: To examine the baseline occurrence, severity, and clinical correlates of suicidal ideation in adults with NF. METHOD: Individuals with NF (N = 220) completed assessments measuring depression (Patient Health Questionnaire-9), anxiety (Generalized Anxiety Disorder-7), perceived stress (Perceived Stress Scale-10), pain (Graded Chronic Pain Scale and PROMIS Pain Interference Short Form 8a), and general quality of life (World Health Organization Quality of Life-Brief version) before beginning a two-arm, single-blind randomized control trial of a live-video mind-body program for stress management and resiliency. RESULTS: Nineteen percent (n = 42) of the individuals experienced suicidal ideation (ie, >0; ideation present several days or greater). More individuals with NF2 experienced suicidal ideation compared with those with NF1 or schwannomatosis. All of the clinical variables except pain intensity were significantly correlated ( P < 0.01) with greater suicidal ideation. Suicidal ideation in individuals with NF was comparable to or higher than that in other medical populations (eg, cancer, dermatological, neurologic). Depression and poor psychological quality of life significantly increased the risk for suicidal ideation. CONCLUSION: Suicidal ideation was relatively prevalent in individuals with NF seeking participation in a mind-body randomized controlled trial. NF clinicians should be prepared to discuss these concerns and provide resources when suicidal ideation is present. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov (Identifier NCT03406208).

Mindfulness is inversely associated with psychological symptoms in long-term cardiac arrest survivors.

Identifying correlates of psychological symptoms in cardiac arrest (CA) survivors is a major research priority. In this longitudinal survey study, we evaluated associations between mindfulness, baseline psychological symptoms, and 1-year psychological symptoms in long-term CA survivors. We collected demographic and CA characteristics at baseline. At both timepoints, we assessed posttraumatic stress symptoms (PTS) through the PTSD Checklist-5 (PCL-5) and depression and anxiety symptoms through the Patient Health Questionnaire-4 (PHQ-4). At follow-up, we assessed mindfulness through the Cognitive and Affective Mindfulness Scale-Revised (CAMS-R). We used adjusted linear regression to predict 1-year PCL-5 and PHQ-4 scores, with particular consideration of the CAMS-R as a cross-sectional correlate of outcome. We included 129 CA survivors (mean age: 52 years, 52% male, 98% white). At 1-year follow-up, in adjusted models, CAMS-R (ß: -0.35, p < 0.001) and baseline PCL-5 scores (ß: 0.56, p < 0.001) were associated with 1-year PCL-5 scores. CAMS-R (ß: -0.34, p < 0.001) and baseline PHQ-4 scores were associated with 1-year PHQ-4 scores (ß: 0.37, p < 0.001). In conclusion, mindfulness was inversely associated with psychological symptoms in long-term CA survivors. Future studies should examine the longitudinal relationship of mindfulness and psychological symptoms after CA.

An experimental study of mindfulness and acceptance-based skills for internalized ageism in older adults and college students.

OBJECTIVES: Older adults (OA; 65+) can become cognitively fused with negative attitudes and stereotypes. Given the verbal nature of ageist stereotypes, mindfulness and acceptance-based practices (MABPs) may help the impact of negative aging attitudes by increasing non-judgmental awareness, cognitive defusion, and acceptance. As part of a larger study, this project examined whether an Acceptance and Commitment Therapy (ACT) consistent MABP would reduce negative aging attitudes using an experimental design. We hypothesized that assignment to the MABP condition would be associated with lower negative aging attitudes for both OAs and university undergraduates (18-25). METHOD: Both OAs (N = 60) and undergraduate student (N = 60) participants were assigned to the experimental or comparison condition (MABP vs. sit-and-think task) and were then presented negative ageist stereotypes assessed with two ageism measures. RESULTS: Following the MABP, undergraduates who received a MABP had significantly lower ageism scores than did undergraduates who did not, while OAs endorsed higher scores on ageism after receiving the MABP (vs comparison group; ps < .05). There was no significant condition by age sample interaction effect. CONCLUSION: Results suggest that undergraduates and OAs may have different strategies for recontextualizing ageist attitudes, with OAs possibly employing different strategies when confronted with ageism in an experimental context. Overall, aging education, OA experimental research, and evidence-based interventions for negative beliefs about aging are needed. Limitations and future directions are discussed.

Mind-Body Therapy via Videoconferencing in Patients With Neurofibromatosis: Analyses of 1-Year Follow-up.

BACKGROUND: Neurofibromatosis (NF) is a rare genetic disorder associated with substantial deficits in quality of life (QoL). We have previously shown that in this population the Relaxation Response Resiliency Program for NF (3RP-NF) delivered via live videoconferencing is associated with sustained improvement in QoL from baseline through 6-month follow-up over and above an attention placebo control.. PURPOSE: To examine between- and within-group changes in QoL domains from baseline to 1-year follow-up and 6-month to 1-year follow-up. METHODS: We enrolled and randomized 63 adults with NF. Of these, 52 completed the 6-month follow-up and 53 completed 1-year follow-up. We assessed QoL with the World Health Organization Quality of Life-Brief. RESULTS: Participation in the 3RP-NF was associated with sustained improvement from baseline to 1 year in physical health QoL (12.68; 95% confidence interval [CI]: 1.76 to 23.59; p =.024) and social relations QoL (16.81; 95% CI: 3.03 to 30.59; p =.018) but not psychological and environmental QoL, over and above the control (between group changes). Participants in the 3RP-NF improved from baseline to 1 year in psychological (8.16; 95% CI: 1.17 to 15.14; p =.023) and social relations QoL (9.93; 95% CI: 1.10 to 18.77; p = .028; within-group changes). There were no other significant differences between or within groups from baseline/6 months to 1 year. CONCLUSIONS: The live video 3RP-NF shows promise in improving QoL dimensions over the course of 1 year. Results should be replicated in a fully powered randomized controlled trial. CLINICAL TRIAL INFORMATION: ClinicalTrials.gov NCT03406208.

Can a Dyadic Resiliency Program Improve Quality of Life in Cognitively Intact Dyads of Neuro-ICU Survivors and Informal Caregivers? Results from a Pilot RCT.

BACKGROUND: Neuro-ICU hospitalization for an acute neurological illness is often traumatic and associated with heightened emotional distress and reduced quality of life (QoL) for both survivors and their informal caregivers (i.e., family and friends providing unpaid care). In a pilot study, we previously showed that a dyadic (survivor and caregiver together) resiliency intervention (Recovering Together [RT]) was feasible and associated with sustained improvement in emotional distress when compared with an attention placebo educational control. Here we report on changes in secondary outcomes assessing QoL. METHODS: Survivors (n = 58) and informal caregivers (n = 58) completed assessments at bedside and were randomly assigned to participate together as a dyad in the RT or control intervention (both 6 weeks, two in-person sessions at bedside and four sessions via live video post discharge). We measured QoL domain scores (physical health, psychological, social relations, and environmental), general QoL, and QoL satisfaction using the World Health Organization Quality of Life Abbreviated Instrument at baseline, post treatment, and 3 months' follow-up. We conducted mixed model analyses of variance with linear contrasts to estimate (1) within-group changes in QoL from baseline to post treatment and from post treatment to 3 months' follow-up and (2) between-group differences in changes in QoL from baseline to post treatment and from post treatment to 3 months' follow-up. RESULTS: We found significant within-group improvements from baseline to post treatment among RT survivors for physical health QoL (mean difference 1.73; 95% confidence interval [CI] 0.39-3.06; p = 0.012), environmental QoL (mean difference 1.29; 95% CI 0.21-2.36; p = 0.020), general QoL (mean difference 0.55; 95% CI 0.13-0.973; p = 0.011), and QoL satisfaction (mean difference 0.87; 95% CI 0.36-1.37; p = 0.001), and those improvements sustained through the 3-month follow-up. We found no significant between-group improvements for survivors or caregivers from baseline to post treatment or from post treatment to 3 months' follow-up for any QoL variables (i.e., domains, general QoL, and QoL satisfaction together). CONCLUSIONS: In this pilot study, we found improved QoL among survivors, but not in caregivers, who received RT and improvements sustained over time. These RT-related improvements were not significantly greater than those observed in the control. Results support a fully powered randomized controlled trial to allow for a definitive evaluation of RT-related effects among dyads of survivors of acute brain injury and their caregivers.

Resilient youth with neurofibromatosis: Less perceived stress and greater life satisfaction after an 8-week virtual mind-body intervention.

OBJECTIVES: The neurofibromatoses (NF) are rare, incurable genetic disorders. Adolescents with NF report greater stress and lower life satisfaction compared to same-age peers. We report on changes in life satisfaction and perceived stress following an 8-week single-blind, virtual randomized controlled trial of a mind-body intervention versus an educational control. METHODS: Adolescents (N = 51) completed measures at baseline, post-treatment (N = 45), and 6 months later (N = 39). RESULTS: Adolescents were geographically diverse, 41% female, and 76% White. Adolescents randomized to the intervention had greater improvements from baseline to post-test in stress compared to those in control; these were maintained through 6 months. Those randomized to intervention also reported greater improvement in life satisfaction from baseline to 6 months. CONCLUSIONS: The NF tailored mind-body program resulted in sustained reduction in stress and improved life satisfaction. A virtual model of mind-body care may help adolescents who face other chronic medical illness.

Improvement in resiliency factors among adolescents with neurofibromatosis who participate in a virtual mind-body group program.

PURPOSE: To examine effects of a virtual mind-body group for adolescents with neurofibromatoses (NF1 and NF2; Resilient Youth with Neurofibromatosis; RY-NF) on multiple resiliency factors against a health education attention control (Health Education for Youth with Neurofibromatosis; HE-NF) using data from a randomized controlled trial. Specifically, our research question was whether adolescents randomized to the RY-NF (versus the HE-NF) would have greater improvements in resiliency factors at post-intervention and whether these gains would be maintained at 6-month follow-up. METHODS: Adolescents with NF (n = 51; M age 12-17) were randomly assigned to RY-NF (n = 27) or HE-NF (n = 24). Resiliency factors (mindfulness, coping, gratitude, optimism, and social support) were collected at baseline, post-intervention (88%), and 6-month follow-up (82%). RESULTS: Participation in the RY-NF was associated with greater pre-to-post improvements in gratitude (Mdifference = 4.38; 95% CI-0.52-8.23; p = .027) and mindfulness (Mdifference= 9.41; 95% CI 4.40-14.42.; p < .001) compared to HE-NF; improvements sustained at 6 months. There were no group differences on any additional resiliency factors. However, participation in the RY-NF was associated with pre-to-post- improvements in coping (Mdifference= 9.16; 95% CI 2.93-15.39; p = .005), and social support (Mdifference= 6.79; 95% CI 1.96-11.63; p = .007); improvements sustained at 6 months. CONCLUSIONS: Participation in the RY-NF resulted in sustained improvement in several resiliency factors. Promoting resiliency may help adolescents successfully navigate challenges associated with NF.

Associations Between Gender, Resiliency Factors, and Anxiety in Neuro-ICU Caregivers: a Prospective Study.

BACKGROUND: Informal caregivers of patients admitted to the neuroscience intensive care unit (Neuro-ICU) are at risk for developing chronic anxiety. Resiliency factors may reduce risk, yet their differential effects for female and male caregivers have not been studied in this population. We aim to examine interactions between gender and baseline resiliency factors and anxiety at baseline, 3 months, and 6 months. METHOD: Prospectively studied caregivers (N = 96) of patients admitted to the Neuro-ICU completed baseline sociodemographics and resiliency measures (coping, mindfulness, self-efficacy, intimate care, and caregiver preparedness), and anxiety severity at baseline (hospitalization), 3 months, and 6 months. RESULTS: Baseline anxiety predicted future anxiety (3 and 6 months). Caregivers who reported high (versus low) baseline coping, mindfulness, self-efficacy, and preparedness for caregiving reported lower baseline anxiety (ps ≤ 0.012). An interaction between caregiver gender and baseline mindfulness was seen at 3 months (p = 0.021), with high mindfulness males reporting lower anxiety than high mindfulness females, and low mindfulness males reporting higher anxiety than low mindfulness females. CONCLUSION: Results emphasize the protective role of resilience in the trajectory of anxiety among informal caregivers. Findings emphasize the need to rapidly deploy skills-based treatment to Neuro-ICU caregivers to prevent future development and maintenance of anxiety, specifically emphasizing mindfulness in male caregivers.

Building Resiliency in Dyads of Patients Admitted to the Neuroscience Intensive Care Unit and Their Family Caregivers: Lessons Learned From William and Laura.

Sustaining a stroke, regardless of its severity, is a life-changing and often traumatizing event that can lead to chronic depression, anxiety, and posttraumatic stress in both survivors and their family caregivers. Psychosocial interventions for emotional distress after stroke are limited, have emphasized psychoeducation rather than skills, treatment of chronic emotional distress rather than prevention, and have targeted either the patient or their caregiver without accounting for the context of their interpersonal relationship. Here we discuss "Recovering Together," a novel program for dyads of patients with stroke and their family caregivers aimed at preventing chronic emotional distress by using cognitive behavioral principles to teach resiliency and interpersonal communication skills beginning during hospitalization in a neuroscience intensive care unit and continuing after discharge via telehealth. We illustrate the case of a pilot dyad enrolled in the Recovering Together program, to showcase how patients and caregivers can engage with and benefit from it. This dyad's experience suggests that Recovering Together is credible, feasible, and useful. The potential dyadic benefit of this intervention lies not only in providing the opportunity to optimize recovery and prevent long-term emotional distress, but also in creating the space to come together as a pair and make meaning from critical illness.

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.

Psychological Flexibility and Resilience in Parentally Bereaved College Students.

Losing a parent prior to age 18 years can have life-long implications. The challenges of emerging adulthood may be even more difficult for parentally bereaved college students, and studying their coping responses is crucial for designing campus services and therapy interventions. This study examined the relationships between bereavement-related distress, experiential avoidance (EA), values, and resilience. Findings indicated that EA and low importance of values were correlated with bereavement difficulties, with EA accounting for 26% of the variance in the bereavement distress measure. In addition, reports of behaving consistently with values accounted for 20% of the variance in the resiliency measure. Contrary to hypotheses and previous literature, there were no significant relationships between the measures of EA and values. The results, limitations, and directions for future research are discussed.

A dual-acting DNASE1/DNASE1L3 biologic prevents autoimmunity and death in genetic and induced lupus models.

A defining feature of systemic lupus erythematosus (SLE) is loss of tolerance to self-DNA, and DNASE1L3 deficiency, the main enzyme responsible for chromatin degradation in blood, is also associated with SLE. This association includes an ultra-rare pediatric population with DNASE1L3 deficiency who develop SLE, adult patients with loss of function variants of DNASE1L3 who are at a higher risk for SLE, and patients with sporadic SLE who have neutralizing autoantibodies to DNASE1L3. To mitigate the pathogenic effects of inherited and acquired DNASE1L3 deficiencies, we engineered a long-acting enzyme biologic with dual DNASE1/DNASE1L3 activity that is resistant to DNASE1 and DNASE1L3 inhibitors. Notably, we found that the biologic prevented the development of lupus in Dnase1-/-/Dnase1L3-/- double knockout mice and rescued animals from death in pristane-induced lupus. Finally, we confirmed that the human isoform of the enzyme biologic was not recognized by autoantibodies in SLE and efficiently degrades genomic and mitochondrial cell free DNA, as well as microparticle DNA, in SLE plasma. Our findings suggest that autoimmune diseases characterized by aberrant DNA accumulation, such as SLE, can be effectively treated with a replacement DNASE tailored to bypass pathogenic mechanisms, both genetic and acquired, that restrict DNASE1L3 activity.

Resiliency outcomes after participation in an asynchronous web-based platform for adults with neurofibromatosis: The NF-Web study.

The purpose of this study was to analyze secondary resiliency and user experience outcomes from a novel, 8-week website-based mind-body intervention (NF-Web) for adults (18+) with neurofibromatosis (NF1, NF2, and schwannomatosis), a genetic, neurocutaneous disorder characterized by nerve sheath tumors of the central and peripheral nervous system. The study design was a secondary data analysis of a single-arm, early feasibility pilot study (September 2020-May 2021) for adults with NF (N = 28). Across participants, the mean age was 46 (SD = 13.67) and included 22 females and 6 males. Participants completed baseline and posttest assessments (t-tests), as well as exit interviews (exploratory rapid data analysis). Results demonstrated that participation was associated with pre-to-post improvements in gratitude, coping, and mindfulness (p < .05). Exit interviews indicated participant enjoyment and that many would recommend NF-Web to a friend. Participants found the website easy to navigate and enjoyed NF-Web's video format. Many found transcripts useful if they had hearing differences or if English was their second language. NF-Web demonstrated initial signals of improvement in resiliency outcomes and positive user experience. Future pilot RCTs will explore these changes by NF type.

A roadmap for early psychosocial support in palliative care for people impacted by ALS-reducing suffering, building resiliency, and setting the stage for delivering timely transdiagnostic psychosocial care.

This commentary describes the current state of psychosocial care for people with amyotrophic lateral sclerosis and their caregivers. We provide recommendations for developing a roadmap for future research based on existing literature and our group's clinical and research experience to inform next steps to expand evidence-based psychosocial care for people with amyotrophic lateral sclerosis and their caregivers, with potential implications for a range of advanced illnesses.

This article talks about psychosocial care for people with amyotrophic lateral sclerosis and the loved ones who take care of them (caregivers). We talk about gaps in current psychosocial care and offer ideas about research to help develop care options for people with amyotrophic lateral sclerosis and their caregivers. It is possible that this work could also guide the development of psychosocial care for people with other advanced illnesses and their caregivers.

"When Will All of This End?": A 65-Year-Old Man With Amyotrophic Lateral Sclerosis and Psychiatric Distress.

Patients with amyotrophic lateral sclerosis (ALS) are impacted both physically and psychiatrically during their illness. Emotional distress (ie, anxiety, depression, stress) is common in patients diagnosed with ALS, as prognosis is poor and there are very few effective treatments. The progression of symptoms is unpredictable, and all cases are terminal. Neuropsychiatric symptoms are also increasingly recognized as part of ALS symptomatology. There are currently no empirically supported interventions or best practices for adjustment to ALS. This case presents both the psychological and pharmacologic aspects of caring for a patient with ALS. Psychotherapy utilized a cognitive behavioral therapy-informed approach, and pharmacotherapy was tailored to the specific needs of the patient. We explore how these approaches impacted our patient, as well as how ALS-specific challenges presented throughout the course of treatment.

Effect of Mind-Body Skills Training on Quality of Life for Geographically Diverse Adults With Neurofibromatosis: A Fully Remote Randomized Clinical Trial.

Importance: Neurofibromatoses (NF; NF1, NF2, and schwannomatosis) are hereditary tumor predisposition syndromes with a risk for poor quality of life (QOL) and no evidence-based treatments. Objective: To compare a mind-body skills training program, the Relaxation Response Resiliency Program for NF (3RP-NF), with a health education program (Health Enhancement Program for NF; HEP-NF) for improvement of quality of life among adults with NF. Design, Setting, and Participants: This single-blind, remote randomized clinical trial randomly assigned 228 English-speaking adults with NF from around the world on a 1:1 basis, stratified by NF type, between October 1, 2017, and January 31, 2021, with the last follow-up February 28, 2022. Interventions: Eight 90-minute group virtual sessions of 3RP-NF or HEP-NF. Main Outcomes and Measures: Outcomes were collected at baseline, after treatment, and at 6-month and 1-year follow-up. The primary outcomes were physical health and psychological domain scores of the World Health Organization Quality of Life Brief Version (WHOQOL-BREF). Secondary outcomes were the social relationships and environment domain scores of the WHOQOL-BREF. Scores are reported as transformed domain scores (range, 0-100, with higher scores indicating higher QOL). Analysis was performed on an intention-to-treat basis. Results: Of 371 participants who underwent screening, 228 were randomized (mean [SD] age, 42.7 [14.5] years; 170 women [75%]), and 217 attended 6 or more of 8 sessions and provided posttest data. Participants in both programs improved from baseline to after treatment in primary outcomes of physical health QOL score (3RP-NF, 5.1; 95% CI, 3.2-7.0; P < .001; HEP-NF, 6.4; 95% CI, 4.6-8.3; P < .001) and psychological QOL score (3RP-NF, 8.5; 95% CI, 6.4-10.7; P < .001; HEP-NF, 9.2; 95% CI, 7.1-11.2; P < .001). Participants in the 3RP-NF group showed sustained improvements after treatment to 12 months; posttreatment improvements for the HEP-NF group diminished (between-group difference for physical health QOL score, 4.9; 95% CI, 2.1-7.7; P = .001; effect size [ES] = 0.3; and psychological QOL score, 3.7; 95% CI, 0.2-7.6; P = .06; ES = 0.2). Results were similar for secondary outcomes of social relationships and environmental QOL. There were significant between-group differences from baseline to 12 months in favor of the 3RP-NF for physical health QOL score (3.6; 95% CI, 0.5-6.6; P = .02; ES = 0.2), social relationships QOL score (6.9; 95% CI, 1.2-12.7; P = .02; ES = 0.3), and environmental QOL score (3.5; 95% CI, 0.4-6.5; P = .02; ES = 0.2). Conclusions and Relevance: In this randomized clinical trial of 3RP-NF vs HEP-NF, benefits from 3RP-NF and HEP-NF were comparable after treatment, but at 12 months from baseline, 3RP-NF was superior to HEP-NF on all primary and secondary outcomes. Results support the implementation of 3RP-NF in routine care. Trial Registration: ClinicalTrials.gov Identifier: NCT03406208.

Resilient together-ALS: leveraging the NDD transdiagnostic framework to develop an early dyadic intervention for people with amyotrophic lateral sclerosis and their informal care-partners.

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease characterized by progressive weakness and eventual death, usually within 3-5 years. An ALS diagnosis is associated with substantial emotional distress for both the affected person and their family care-partners which impairs the ability to engage in important conversations about long term care planning, negatively impacts ALS symptoms for the patient, and quality of life for both patient and care-partner. Here we 1) discuss published works identified by the authors about psychosocial interventions for the ALS population, 2) identify a lack of early, dyadic interventions to support psychosocial needs of people with ALS and care-partners; 3) describe the Neurodegenerative Diseases (NDD) framework for early dyadic intervention development and 4) propose an adaptation of an evidence-based early dyadic psychosocial intervention, Recovering Together, for the unique needs of people with ALS and their care-partners (Resilient Together-ALS; RT-ALS) using the NDD framework. Future work will use stakeholder feedback to optimize the intervention for subsequent efficacy testing.