Advertisement

Journal of Neuro-Oncology

, Volume 137, Issue 2, pp 321–329 | Cite as

The impact of a mind–body program on multiple dimensions of resiliency among geographically diverse patients with neurofibromatosis

  • Emily L. Zale
  • Catherine Pierre-Louis
  • Eric A. Macklin
  • Eric Riklin
  • Ana-Maria VranceanuEmail author
Clinical Study

Abstract

The neurofibromatoses (NF) are incurable genetic disorders that can cause nerve sheath tumors, chronic pain, and disfiguration. Patients with NF report lower quality of life and greater distress, and may benefit from programs that promote resiliency. To test effects of an 8-week mind–body program (Relaxation Response Resiliency Program for NF [3RP-NF]) on resiliency, using data derived from a larger randomized controlled trial of the 3RP-NF versus attention placebo control (Vranceanu et al. in Neurology 87:806–814, 2016). Participants (N = 63; 46 female; 52 White) were randomized to 3RP-NF (n = 32, M age = 42.86) or control (n = 31, M age = 39.90), completed intervention sessions via group videoconferencing, and provided self-report measures of resiliency (i.e., perceived coping abilities, perceived social support, gratitude, optimism, spiritual well-being, mindfulness) at baseline, post-intervention, and 6-month follow-up. All participants attended at least 6/8 sessions and 83% (N = 52) provided 6-month follow-up data. The 3RP-NF (vs. control) produced greater improvements from pre- to post-intervention in perceived coping abilities (M difference = 6.68; p = .008), perceived social support (M difference = 9.16; p = .032), and mindfulness (M difference = 2.23; p = .035), which were maintained at 6-month follow up. We did not observe group differences in spiritual well-being, optimism, or gratitude. The 3RP-NF produced sustained increases in multiple dimensions of resiliency (perceived coping abilities, perceived social support, and mindfulness). Promoting resiliency may be particularly important for a population that is underserved and living with a chronic, incurable illness.

Keywords

Resiliency Neurofibromatosis Mindfulness Intervention Coping 

Notes

Funding

This study was fully funded by the Children’s Tumor Foundation through a clinical research grant awarded to Ana-Maria Vranceanu.

Compliance with ethical standards

Conflict of interest

Emily L. Zale declares that she has no conflict of interest. Catherine Pierre-Louis declares that she has no conflict of interest. Eric A. Macklin declares that he has no conflict of interest. Eric Riklin declares that he has no conflict of interest. Ana-Maria Vranceanu declares that she has no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Consent was obtained from all individual participants included in the study.

References

  1. 1.
    Evans DG, Howard E, Giblin C et al (2010) Birth incidence and prevalence of tumor-prone syndromes: estimates from a UK family genetic register service. Am J Med Genet A 152A:327–332.  https://doi.org/10.1002/ajmg.a.33139 CrossRefPubMedGoogle Scholar
  2. 2.
    Antinheimo J, Sankila R, Carpén O, Pukkala E, Sainio M, Jääskeläinen J (2000) Population-based analysis of sporadic and type 2 neurofibromatosis-associated meningiomas and schwannomas. Neurology 54:71–76CrossRefGoogle Scholar
  3. 3.
    Asthagiri AR, Parry DM, Butman JA et al (2009) Neurofibromatosis type 2. Lancet Lond Engl 373:1974–1986.  https://doi.org/10.1016/S0140-6736(09)60259-2 CrossRefGoogle Scholar
  4. 4.
    Lu-Emerson C, Plotkin SR (2009) The neurofibromatoses. Part 2: NF2 and schwannomatosis. Rev Neurol Dis 6:E81–E86PubMedGoogle Scholar
  5. 5.
    Vranceanu A-M, 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.  https://doi.org/10.1007/s11060-013-1195-2 CrossRefPubMedGoogle Scholar
  6. 6.
    Wang DL, Smith KB, Esparza S et al (2012) Emotional functioning of patients with neurofibromatosis tumor suppressor syndrome. Genet Med 14:977.  https://doi.org/10.1038/gim.2012.85 CrossRefPubMedPubMedCentralGoogle Scholar
  7. 7.
    Wolkenstein P, Zeller J, Revuz J, Ecosse E, Leplège A (2001) Quality-of-life impairment in neurofibromatosis type 1: a cross-sectional study of 128 cases. Arch Dermatol 137:1421–1425CrossRefGoogle Scholar
  8. 8.
    Page PZ, Page GP, Ecosse E, Korf BR, Leplege A, Wolkenstein P (2006) Impact of neurofibromatosis 1 on quality of life: a cross-sectional study of 176 American cases. Am J Med Genet A 140A:1893–1898.  https://doi.org/10.1002/ajmg.a.31422 CrossRefGoogle Scholar
  9. 9.
    Kodra Y, Giustini S, Divona L et al (2009) Health-related quality of life in patients with neurofibromatosis type 1. A survey of 129 Italian patients. Dermatol Basel Switz 218:215–220.  https://doi.org/10.1159/000187594 CrossRefGoogle Scholar
  10. 10.
    Rumsey N, Harcourt D (2004) Body image and disfigurement: issues and interventions. Body Image 1:83–97.  https://doi.org/10.1016/S1740-1445(03)00005-6 CrossRefPubMedGoogle Scholar
  11. 11.
    Brantley PJ, Dutton GR, Grothe KB, Bodenlos JS, Howe J, Jones GN (2005) Minor life events as predictors of medical utilization in low income African American family practice patients. J Behav Med 28:395–401.  https://doi.org/10.1007/s10865-005-9001-z CrossRefPubMedGoogle Scholar
  12. 12.
    Carlson LE, Bultz BD (2003) Benefits of psychosocial oncology care: improved quality of life and medical cost offset. Health Qual Life Outcomes 1:8.  https://doi.org/10.1186/1477-7525-1-8 CrossRefPubMedPubMedCentralGoogle Scholar
  13. 13.
    Bonanno GA, Galea S, Bucciarelli A, Vlahov D (2007) What predicts psychological resilience after disaster? The role of demographics, resources, and life stress. J Consult Clin Psychol 75:671–682.  https://doi.org/10.1037/0022-006X.75.5.671 CrossRefPubMedGoogle Scholar
  14. 14.
    Shaffer KM, Riklin E, Jacobs JM, Rosand J, Vranceanu A-M (2016) Psychosocial resiliency is associated with lower emotional distress among dyads of patients and their informal caregivers in the neuroscience intensive care unit. J Crit Care 36:154–159.  https://doi.org/10.1016/j.jcrc.2016.07.010 CrossRefPubMedGoogle Scholar
  15. 15.
    Windle G (2011) What is resilience? A review and concept analysis. Rev Clin Gerontol 21:152–169.  https://doi.org/10.1017/S0959259810000420 CrossRefGoogle Scholar
  16. 16.
    Tugade MM, Fredrickson BL, Feldman Barrett L (2004) Psychological resilience and positive emotional granularity: examining the benefits of positive emotions on coping and health. J Pers 72:1161–1190.  https://doi.org/10.1111/j.1467-6494.2004.00294.x CrossRefPubMedPubMedCentralGoogle Scholar
  17. 17.
    Steinhardt M, Dolbier C (2008) Evaluation of a resilience intervention to enhance coping strategies and protective factors and decrease symptomatology. J Am Coll Health 56:445–453.  https://doi.org/10.3200/JACH.56.44.445-454 CrossRefPubMedGoogle Scholar
  18. 18.
    Tait L, Birchwood M, Trower P (2004) Adapting to the challenge of psychosis: personal resilience and the use of sealing-over (avoidant) coping strategies. Br J Psychiatry 185:410–415.  https://doi.org/10.1192/bjp.185.5.410 CrossRefPubMedGoogle Scholar
  19. 19.
    Fiol CM, O’Connor EJ (2003) Waking up! Mindfulness in the face of bandwagons. Acad Manage Rev 28:54–70.  https://doi.org/10.2307/30040689 CrossRefGoogle Scholar
  20. 20.
    Thompson RW, Arnkoff DB, Glass CR (2011) Conceptualizing mindfulness and acceptance as components of psychological resilience to trauma. Trauma Violence Abuse 12:220–235.  https://doi.org/10.1177/1524838011416375 CrossRefPubMedGoogle Scholar
  21. 21.
    Horton TV, Wallander JL (2001) Hope and social support as resilience factors against psychological distress of mothers who care for children with chronic physical conditions. Rehabil Psychol 46:382–399.  https://doi.org/10.1037/0090-5550.46.4.382 CrossRefGoogle Scholar
  22. 22.
    Tsai J, Harpaz-Rotem I, Pietrzak RH, Southwick SM (2012) The role of coping, resilience, and social support in mediating the relation between PTSD and social functioning in veterans returning from Iraq and Afghanistan. Psychiatry 75:135–149.  https://doi.org/10.1521/psyc.2012.75.2.135 CrossRefPubMedGoogle Scholar
  23. 23.
    Pentz M (2005) Resilience among older adults with cancer and the importance of social support and spirituality-faith. J Gerontol Soc Work 44:3–22.  https://doi.org/10.1300/J083v44n03_02 CrossRefGoogle Scholar
  24. 24.
    Carver CS, Scheier MF, Segerstrom SC (2010) Optimism. Clin Psychol Rev 30:879–889.  https://doi.org/10.1016/j.cpr.2010.01.006 CrossRefPubMedPubMedCentralGoogle Scholar
  25. 25.
    Peterman AH, Fitchett G, Brady MJ, Hernandez L, Cella D (2002) Measuring spiritual well-being in people with cancer: the functional assessment of chronic illness therapy-spiritual well-being scale (FACIT-Sp). Ann Behav Med 24:49–58CrossRefGoogle Scholar
  26. 26.
    Vranceanu A-M, Riklin E, Merker VL, Macklin EA, Park ER, Plotkin SR (2016) Mind-body therapy via videoconferencing in patients with neurofibromatosis: an RCT. Neurology 87:806–814.  https://doi.org/10.1212/WNL.0000000000003005 CrossRefPubMedGoogle Scholar
  27. 27.
    Vockley M (2015) The rise of telehealth: “Triple Aim,” innovative technology, and popular demand are spearheading new models of health and wellness care. Biomed Instrum Technol Assoc Adv Med Instrum 49:306–320.  https://doi.org/10.2345/0899-8205-49.5.306 CrossRefGoogle Scholar
  28. 28.
    Park ER, Traeger L, Vranceanu A-M et al (2013) The development of a patient-centered program based on the relaxation response: the relaxation response resiliency program (3RP). Psychosomatics 54:165–174.  https://doi.org/10.1016/j.psym.2012.09.001 CrossRefPubMedGoogle Scholar
  29. 29.
    Harris PA (2012) Research electronic data capture (REDCap): planning, collecting and managing data for clinical and translational research. BMC Bioinform 13:1–1.  https://doi.org/10.1186/1471-2105-13-S12-A15 CrossRefGoogle Scholar
  30. 30.
    Vranceanu A-M, Merker VL, Plotkin SR, Park ER (2014) 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.  https://doi.org/10.1007/s11060-014-1522-2 CrossRefPubMedGoogle Scholar
  31. 31.
    Carver C (2006) Measaure of current status. http://www.psy.miami.edu/faculty/ccarver/sclMOCS.html
  32. 32.
    Sherbourne CD, Stewart AL (1991) The MOS social support survey. Soc Sci Med 1982 32:705–714Google Scholar
  33. 33.
    Mccullough ME, Emmons RA, Tsang J-A (2002) The grateful disposition: a conceptual and empirical topography. J Pers Soc Psychol 82:112–127.  https://doi.org/10.1037/0022-3514.82.1.112 CrossRefPubMedGoogle Scholar
  34. 34.
    Scheier MF, Carver CS (1985) Optimism, coping, and health: assessment and implications of generalized outcome expectancies. Health Psychol Off J Div Health Psychol Am Psychol Assoc 4:219–247Google Scholar
  35. 35.
    Feldman G, Hayes A, Kumar S, Greeson J, Laurenceau J-P (2007) Mindfulness and emotion regulation: the development and initial validation of the cognitive and affective mindfulness scale-revised (CAMS-R). J Psychopathol Behav Assess 29:177–190.  https://doi.org/10.1007/s10862-006-9035-8 CrossRefGoogle Scholar
  36. 36.
    Browne RH (1995) On the use of a pilot sample for sample size determination. Stat Med 14:1933–1940.  https://doi.org/10.1002/sim.4780141709 CrossRefPubMedGoogle Scholar
  37. 37.
    Lancaster GA, Dodd S, Williamson PR (2004) Design and analysis of pilot studies: recommendations for good practice. J Eval Clin Pract 10:307–312.  https://doi.org/10.1111/j..2002.384.doc.x CrossRefGoogle Scholar
  38. 38.
    Shih WJ, Ohman-Strickland PA, Lin Y (2004) Analysis of pilot and early phase studies with small sample sizes. Stat Med 23:1827–1842.  https://doi.org/10.1002/sim.1807 CrossRefPubMedGoogle Scholar
  39. 39.
    Whitehead AL, Julious SA, Cooper CL, Campbell MJ (2005) Estimating the sample size for a pilot randomised trial to minimise the overall trial sample size for the external pilot and main trial for a continuous outcome variable. Stat Methods Med Res.  https://doi.org/10.1177/0962280215588241 CrossRefGoogle Scholar
  40. 40.
    Rounsaville BJ, Carroll KM, Onken LS (2001) A stage model of behavioral therapies research: getting started and moving on from stage I. Clin Psychol Sci Pract 8:133–142.  https://doi.org/10.1093/clipsy.8.2.133 CrossRefGoogle Scholar
  41. 41.
    Grossman P, Niemann L, Schmidt S, Walach H (2004) Mindfulness-based stress reduction and health benefits. A meta-analysis. J Psychosom Res 57:35–43.  https://doi.org/10.1016/S0022-3999(03)00573-7 CrossRefPubMedGoogle Scholar
  42. 42.
    Penley JA, Tomaka J, Wiebe JS (2002) The association of coping to physical and psychological health outcomes: a meta-analytic review. J Behav Med 25:551–603CrossRefGoogle Scholar
  43. 43.
    Wang H-H, Wu S-Z, Liu Y-Y (2003) Association between social support and health outcomes: a meta-analysis. Kaohsiung J Med Sci 19:345–351.  https://doi.org/10.1016/S1607-551X(09)70436-X CrossRefPubMedGoogle Scholar
  44. 44.
    Ridder D de, Schreurs K (1996) Coping, social support and chronic disease: a research agenda. Psychol Health Med 1:71–82.  https://doi.org/10.1080/13548509608400007 CrossRefGoogle Scholar
  45. 45.
    Luthar SS, Cicchetti D, Becker B (2001) The construct of resilience: a critical evaluation and guidelines for future work. Child Dev 71:543–562CrossRefGoogle Scholar
  46. 46.
    Bower JE, Moskowitz JT, Epel E (2009) Is benefit finding good for your health? Pathways linking positive life changes after stress and physical health outcomes. Curr Dir Psychol Sci 18:337–341CrossRefGoogle Scholar
  47. 47.
    Davydov DM, Stewart R, Ritchie K, Chaudieu I (2010) Resilience and mental health. Clin Psychol Rev 30:479–495.  https://doi.org/10.1016/j.cpr.2010.03.003 CrossRefPubMedGoogle Scholar
  48. 48.
    Logan-Greene P, Green S, Nurius PS, Longhi D (2014) Distinct contributions of adverse childhood experiences and resilience resources: a cohort analysis of adult physical and mental health. Soc Work Health Care 53:776–797.  https://doi.org/10.1080/00981389.2014.944251 CrossRefPubMedPubMedCentralGoogle Scholar
  49. 49.
    Terrill AL, Molton IR, Ehde DM et al (2016) Resilience, age, and perceived symptoms in persons with long-term physical disabilities. J Health Psychol 21:640–649.  https://doi.org/10.1177/1359105314532973 CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2017

Authors and Affiliations

  1. 1.Integrated Brain Health Clinical and Research Program, Psychiatry DepartmentMassachusetts General HospitalBostonUSA
  2. 2.Harvard Medical SchoolBostonUSA
  3. 3.Biostatistics CenterMassachusetts General HospitalBostonUSA
  4. 4.Department of PsychologyFordham UniversityNew YorkUSA
  5. 5.Integrated Brain Health Clinical and Research Program, Department of Psychiatry, Harvard Medical SchoolMassachusetts General HospitalBostonUSA

Personalised recommendations