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The relaxation response resiliency program (3RP) in patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis: results from a pilot study

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Abstract

NF1, NF2, and Schwannomatosis are incurable tumor suppressor syndromes associated with poor quality of life. The aim of this study was to determine the feasibility, acceptability, and preliminary efficacy of an NF adapted, 8-week group mind body skills based intervention, the relaxation response resiliency program (3RP) aimed at improving resiliency and increasing satisfaction with life. Patients seen at MGH’s Neurofibromatosis Clinic were offered participation if they described difficulties coping to a treating physician. Participants completed measures of life satisfaction, resiliency, stress, mood, lifestyle, pain, post-traumatic growth and mindfulness at baseline and after completing the 3RP program. The intervention had relative feasible enrollment rate (48 % rate, 32 out of 67 of patients signing the informed consent form). However, out of the 32 patients who signed the informed consent, only 20 started the study (62.5 %) and only 16 completed it (50 %), suggesting problems with feasibility. The main reason cited for non-participation was burden of travel to the clinic. The intervention was highly acceptable, as evidenced by an 80 % completion rate (16/20). Paired t tests showed significant improvement in resiliency, satisfaction with life, depression, stress, anxiety, mindfulness and post traumatic growth, with effect sizes ranging from 0.73–1.33. There was a trend for significance for improvement in somatization and sleepiness (p = 0.06), with effect sizes of 0.54–0.92 respectively. Statistically nonsignificant improvement was observed in all other measures, with effect sizes small to medium. In sum, the 3RP was found to be relatively feasible, highly acceptable and preliminary efficacious in decreasing symptom burden in this population, supporting the need of a randomized controlled trial.

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References

  1. Vranceanu AM, Merker VL, Park E, Plotkin SR (2013) Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature. J Neurooncol 114:257–262

    Article  PubMed  Google Scholar 

  2. Wang DL, Smith KB, Esparza S, Leigh FA, Muzikansky A, Park ER, Plotkin SR (2012) Emotional functioning of patients with neurofibromatosis tumor suppressor syndrome. Genet Med 14:977–982

    Article  PubMed  PubMed Central  Google Scholar 

  3. Borrell-Carrio F, Suchman AL, Epstein RM (2004) The biopsychosocial model 25 years later: principles, practice, and scientific inquiry. Ann Fam Med 2:576–582

    Article  PubMed  PubMed Central  Google Scholar 

  4. Carlson LE, Bultz BD (2003) Benefits of psychosocial oncology care: improved quality of life and medical cost offset. Health Qual Life Outcomes 1:8

    Article  PubMed  PubMed Central  Google Scholar 

  5. Rounsaville BJ, Carroll KM, Onken LS (2001) A stage model of behavioral therapies research: getting started and moving from Stage 1. Clin Psychol Sci Pract 8:133–142

  6. Park ER, Traeger L, Vranceanu AM, Scult M, Lerner JA, Benson H, Denninger J, Fricchione GL (2013) The development of a patient-centered program based on the relaxation response: the relaxation response resiliency program (3RP). Psychosomatics 54:165–174

    Article  PubMed  Google Scholar 

  7. Samuelson M, Foret M, Baim M, Lerner J, Fricchione G, Benson H, Dusek J, Yeung A (2010) Exploring the effectiveness of a comprehensive mind-body intervention for medical symptom relief. J Altern Complement Med 16:187–192

    Article  PubMed  Google Scholar 

  8. Vranceanu AM, Shaefer JR, Saadi AF, Slawsby E, Sarin J, Scult M, Benson H, Denninger JW (2013) The relaxation response resiliency enhancement program in the management of chronic refractory temporomandibular joint disorder: results from a pilot study. J Musculoskelet Pain 3:224–230

    Article  Google Scholar 

  9. Vranceanu AM, Gonzalez A, Niles H, Fricchione G, Baim M, Yeung A, Denninger JW, Park E (2014) Exploring the effectiveness of a modified comprehensive mind-body intervention for medical and symptom relief. Pyschosomatics. doi:10.1016/j.psym.2014.01.005

    Google Scholar 

  10. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG (2009) Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 42:377–381

    Article  PubMed  PubMed Central  Google Scholar 

  11. Leschziner GD, Golding JF, Ferner RE (2013) Sleep disturbance as part of the neurofibromatosis type 1 phenotype in adults. Am J Med Genet 161:1319–1322

    Article  CAS  Google Scholar 

  12. Diener E, Emmons RA, Larsen RJ, Griffin S (1985) The satisfaction with life scale. J Pers Assess 49:71–75

    Article  PubMed  CAS  Google Scholar 

  13. Wagnild GM, Young HM (1993) Development and psychometric evaluation of the resilience scale. J Nurs Meas 1:165–178

    PubMed  CAS  Google Scholar 

  14. Cohen S, Kamarck T, Mermelstein R (1983) A global measure of perceived stress. J Health Soc Behav 24:385–396

    Article  PubMed  CAS  Google Scholar 

  15. Cohen S, Williamson G (1988) Perceived stress in a probability sample of the United States. J Health Soc Behav 24:385–396

    Article  Google Scholar 

  16. Feldman G, Hayes A, Kumar S, Gresson J, Laurenceau J-P (2007) Mindfulness and emotion regulation: the development and intial validation of the cognitive and affective mindfulness scale-revised (CAMS-R). J Psychopathol Behav Assess 29:177–190

    Article  Google Scholar 

  17. Scheier MF, Carver CS, Bridges MW (1994) Distinguishing optimism from neuroticism (and trait anxiety, self-mastery, and self-esteem): a reevaluation of the life orientation test. J Pers Soc Psychol 67:1063–1078

    Article  PubMed  CAS  Google Scholar 

  18. Tedeschi RG, Calhoun LG (1996) The posttraumatic growth inventory: measuring the positive legacy of trauma. J Trauma Stress 9:455–471

    Article  PubMed  CAS  Google Scholar 

  19. Sullivan MJL, Bishop SR, Pivik J (1995) The pain catastrophizing scale: development and validation. Psychol Assess 7:524–532

    Article  Google Scholar 

  20. Osman A, Barrios FX, Gutierrez PM, Kopper BA, Merrifield T, Grittmann L (2000) The pain catastrophizing scale: further psychometric evaluation with adult samples. J Behav Med 23:351–365

    Article  PubMed  CAS  Google Scholar 

  21. Downie WW, Leatham PA, Rhind VM, Wright V, Branco JA, Anderson JA (1978) Studies with pain rating scales. Ann Rheum Dis 37:378–381

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  22. Johns MW (1991) A new method for measuring daytime sleepiness: the Epworth sleepiness scale. Sleep 14:540–545

    PubMed  CAS  Google Scholar 

  23. Johns MW (1992) Reliability and factor analysis of the Epworth sleepiness scale. Sleep 15:376–381

    PubMed  CAS  Google Scholar 

  24. Arnow B, Kenardy J, Agras WS (1995) The emotional eating scale: the development of a measure to assess coping with negative affect by eating. Int J Eat Disord 18:79–90

    Article  PubMed  CAS  Google Scholar 

  25. Sherbourne CD, Stewart AL (1991) The MOS social support survey. Soc Sci Med 32:705–714

    Article  PubMed  CAS  Google Scholar 

  26. Spitzer RL, Kroenke K, Williams JB (1999) Validation and utility of a self-report version of PRIME-MD: the PHQ primary care study. Primary care evaluation of mental disorders. Patient health questionnaire. JAMA 282:1737–1744

    Article  PubMed  CAS  Google Scholar 

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The authors declare that they have no conflict of interest.

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Correspondence to Ana-Maria Vranceanu.

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Scott R. Plotkin and Elyse R. Park share senior authorship in this study.

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Vranceanu, AM., Merker, V.L., Plotkin, S.R. et al. The relaxation response resiliency program (3RP) in patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis: results from a pilot study. J Neurooncol 120, 103–109 (2014). https://doi.org/10.1007/s11060-014-1522-2

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  • DOI: https://doi.org/10.1007/s11060-014-1522-2

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