Literature DB >> 31677033

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

Jonathan Greenberg1,2, Sarah Carter1,2, Ethan Lester1,2, Christopher J Funes3, Eric A Macklin2,4, Scott Plotkin2,5, Ana-Maria Vranceanu6,7.   

Abstract

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.

Entities:  

Keywords:  Communication access real-time translation; Deaf; Mind–body program; Neurofibromatosis; Resiliency; Videoconferencing

Mesh:

Year:  2019        PMID: 31677033     DOI: 10.1007/s11060-019-03326-5

Source DB:  PubMed          Journal:  J Neurooncol        ISSN: 0167-594X            Impact factor:   4.130


  23 in total

1.  The grateful disposition: a conceptual and empirical topography.

Authors:  Michael E Mccullough; Robert A Emmons; Jo-Ann Tsang
Journal:  J Pers Soc Psychol       Date:  2002-01

2.  Evaluation of a resilience intervention to enhance coping strategies and protective factors and decrease symptomatology.

Authors:  Mary Steinhardt; Christyn Dolbier
Journal:  J Am Coll Health       Date:  2008 Jan-Feb

3.  Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

Authors:  Paul A Harris; Robert Taylor; Robert Thielke; Jonathon Payne; Nathaniel Gonzalez; Jose G Conde
Journal:  J Biomed Inform       Date:  2008-09-30       Impact factor: 6.317

4.  Statistical considerations in the intent-to-treat principle.

Authors:  J M Lachin
Journal:  Control Clin Trials       Date:  2000-06

5.  Health-related Quality of Life of Individuals With Neurofibromatosis Type 2: Results From the NF2 Natural History Study.

Authors:  Vanessa L Merker; Amanda L Bergner; Ana-Maria Vranceanu; Alona Muzikansky; William Slattery; Scott R Plotkin
Journal:  Otol Neurotol       Date:  2016-06       Impact factor: 2.311

6.  On the use of a pilot sample for sample size determination.

Authors:  R H Browne
Journal:  Stat Med       Date:  1995-09-15       Impact factor: 2.373

7.  Distinguishing optimism from neuroticism (and trait anxiety, self-mastery, and self-esteem): a reevaluation of the Life Orientation Test.

Authors:  M F Scheier; C S Carver; M W Bridges
Journal:  J Pers Soc Psychol       Date:  1994-12

8.  Optimism, coping, and health: assessment and implications of generalized outcome expectancies.

Authors:  M F Scheier; C S Carver
Journal:  Health Psychol       Date:  1985       Impact factor: 4.267

9.  The relationship between patients' perception of the effects of neurofibromatosis type 2 and the domains of the Short Form-36.

Authors:  W J Neary; V F Hillier; T Flute; S D G Stephens; R T Ramsden; D G R Evans
Journal:  Clin Otolaryngol       Date:  2010-08       Impact factor: 2.597

Review 10.  Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature.

Authors:  Ana-Maria Vranceanu; Vanessa L Merker; Elyse Park; Scott R Plotkin
Journal:  J Neurooncol       Date:  2013-07-02       Impact factor: 4.130

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  2 in total

Review 1.  Can Cancer Education Programs Improve Health Literacy Among Deaf and Hard of Hearing Patients: a Systematic Review.

Authors:  Jan Münstermann; Jutta Hübner; Jens Büntzel
Journal:  J Cancer Educ       Date:  2022-09-19       Impact factor: 1.771

2.  Impact of the coronavirus pandemic on mental health and health care in adults with neurofibromatosis: Patient perspectives from an online survey.

Authors:  Pamela L Wolters; Stephanie Reda; Staci Martin; Nour Al Ghriwati; Melissa Baker; Dale Berg; Gregg Erickson; Barbara Franklin; Vanessa L Merker; Beverly Oberlander; Stephanie Reeve; Claas Rohl; Tena Rosser; Mary Anne Toledo-Tamula; Ana-Maria Vranceanu
Journal:  Am J Med Genet A       Date:  2021-09-18       Impact factor: 2.578

  2 in total

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