Abstract
Objectives
We sought to characterize psychosocial profiles of adaptation to neurofibromatosis (NF).
Methods
Participants (N = 224) completed self-report measures of psychosocial functioning, including risk (i.e., perceived stress, depression, anxiety) and resiliency (i.e., gratitude, optimism, coping, social support, mindfulness, empathy). We used a TwoStep hierarchical cluster analysis to determine clusters reflecting adaptation to NF.
Results
The analysis revealed two distinct groups, with the “Low Adaptation” group defined by high emotional distress and low resiliency (n = 130; 57% of participants), and the “High Adaptation” group defined by low emotional distress and high resiliency (n = 85; 37% of participants). Clusters differed significantly across nearly all criterion variables, as well as quality of life and pain interference.
Conclusion
Both risk and resiliency factors are important for understanding psychosocial adaptation to NF. Findings suggest that clinical providers should prioritize screening and intervention methods targeting these variables to promote positive adaptation to NF.
Trial registration
ClinicalTrials.gov NCT03406208; https://clinicaltrials.gov/ct2/show/NCT03406208 (Archived by WebCite at http://www.webcitation.org/72ZoTDQ6h).
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Data availability
The data described in this study are available from the corresponding author upon reasonable request.
References
Asthagiri AR, Parry DM, Butman JA et al (2009) Neurofibromatosis type 2. Lancet 373(9679):1974–1986
Wang DL, Smith KB, Esparza S et al (2012) Emotional functioning of patients with neurofibromatosis tumor suppressor syndrome. Genet Med 14(12):977–982
Bayat M, Bayat A (2020) Neurological manifestations of neurofibromatosis: a review. Neurol Sci 41:2685
Patel CM, Ferner R, Grunfeld EA (2011) A qualitative study of the impact of living with neurofibromatosis type 2. Psychol Health Med 16(1):19–28
Ferner RE (2011) Psychological impact of the neurofibromatoses. Neurofibromatoses in clinical practice. Springer, Berlin, pp 129–140
Wilson BN, John AM, Handler MZ, Schwartz RA (2021) Neurofibromatosis type 1: new developments in genetics and treatment. J Am Acad Dermatol 84(6):1667–1676
Lin AL, Gutmann DH (2013) Advances in the treatment of neurofibromatosis-associated tumours. Nat Rev Clin Oncol 10(11):616
Alonso Y (2004) The biopsychosocial model in medical research: the evolution of the health concept over the last two decades. Patient Educ Couns 53(2):239–244
Chabowski M, Junke M, Juzwiszyn J, Milan M, Malinowski M, Janczak D (2017) Adaptation to illness in relation to pain perceived by patients after surgery. J Pain Res 10:1447
Lazarus RS (1974) Psychological stress and coping in adaptation and illness. Int J Psychiatry Med 5(4):321–333
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(2):165–174
Nicholas MK, Linton SJ, Watson PJ, Main CJ, Dot Group FW (2011) Early identification and management of psychological risk factors (“yellow flags”) in patients with low back pain: a reappraisal. Phys Therapy. 91(5):737–753
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(3):257–262
Wolters PL, Martin S, Merker VL et al (2016) Patient-reported outcomes of pain and physical functioning in neurofibromatosis clinical trials. Neurology 87:4–12
Zale EL, Pierre-Louis C, Macklin EA, Riklin E, Vranceanu A-M (2018) The impact of a mind–body program on multiple dimensions of resiliency among geographically diverse patients with neurofibromatosis. J Neurooncol 137(2):321–329
Bartley EJ, Palit S, Fillingim RB, Robinson ME (2019) Multisystem resiliency as a predictor of physical and psychological functioning in older adults with chronic low back pain. Front Psychol 10:1932
Wirth B, Ehrler M, Humphreys BK (2017) First episode of acute low back pain–an exploratory cluster analysis approach for early detection of unfavorable recovery. Disabil Rehabil 39(25):2559–2565
Bergman LR, Magnusson D (1997) A person-oriented approach in research on developmental psychopathology. Dev Psychopathol 9(2):291–319
Vranceanu A-M, Zale EL, Funes CJ et al (2018) Mind-body treatment for international English-speaking adults with neurofibromatosis via live videoconferencing: protocol for a single-blind randomized controlled trial. JMIR Res Protocols. 7(10):11008
Lee E-H (2012) Review of the psychometric evidence of the perceived stress scale. Asian Nurs Res 6(4):121–127
Kroenke K, Spitzer RL, Williams JB (2001) The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med 16(9):606–613
Manea L, Gilbody S, McMillan D (2012) Optimal cut-off score for diagnosing depression with the Patient Health Questionnaire (PHQ-9): a meta-analysis. CMAJ 184(3):E191–E196
Spitzer RL, Kroenke K, Williams JB, Löwe B (2006) A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med 166(10):1092–1097
McCullough ME, Emmons RA, Tsang J-A (2002) The grateful disposition: a conceptual and empirical topography. J Pers Soc Psychol 82(1):112
Carver CS, Scheier MF, Segerstrom SC (2010) Optimism. Clin Psychol Rev 30(7):879–889
Antoni MH, Lechner SC, Kazi A et al (2006) How stress management improves quality of life after treatment for breast cancer. J Consult Clin Psychol 74(6):1143
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(3):177
Davis MH (1983) Measuring individual differences in empathy: evidence for a multidimensional approach. J Pers Soc Psychol 44(1):113
Sherbourne CD, Stewart AL (1991) The MOS social support survey. Soc Sci Med 32(6):705–714
Skevington SM, Lotfy M, O’Connell KA (2004) The World Health Organization’s WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group. Qual Life Res 13(2):299–310
Von Korff M, Ormel J, Keefe FJ, Dworkin SF (1992) Grading the severity of chronic pain. Pain 50(2):133–149
Amtmann D, Cook KF, Jensen MP et al (2010) Development of a PROMIS item bank to measure pain interference. Pain 150(1):173–182
Edwards AW, Cavalli-Sforza LL (1965) A method for cluster analysis. Biometrics 21:362–375
Hoyt MA, Stanton AL (2018) Adjustment to chronic illness. Handbook of health psychology. Routledge, London, pp 179–194
Stewart DE, Yuen T (2011) A systematic review of resilience in the physically ill. Psychosomatics 52(3):199–209
IBM SPSS Statistics for Windows [computer program]. Version 26. IBM Corp., Chicago
Muthén B, Muthén LK (2000) Integrating person-centered and variable-centered analyses: growth mixture modeling with latent trajectory classes. Alcoholism 24(6):882–891
Folkman S, Lazarus RS, Gruen RJ, DeLongis A (1986) Appraisal, coping, health status, and psychological symptoms. J Pers Soc Psychol 50(3):571
Mace RA, Doorley J, Bakhshaie J, Cohen JE, Vranceanu A-M (2021) Psychological resiliency explains the relationship between emotional distress and quality of life in neurofibromatosis. J Neuro-oncol 2021:1–8
Funding
Funding was provided by U.S. Department of Defense (Grant No. W81XWH-17-1-0121).
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SB led the literature review, conceptual design, and manuscript preparation. SH developed the analytic framework and data analyses. VG supported conceptual design, data analyses, and manuscript preparation. A-MV supervised and guided manuscript preparation and editing of review findings.
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Bannon, S.M., Hopkins, S.W., Grunberg, V.A. et al. Psychosocial profiles of risk and resiliency in neurofibromatoses: a person-centered analysis of illness adaptation. J Neurooncol 156, 519–527 (2022). https://doi.org/10.1007/s11060-021-03928-y
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DOI: https://doi.org/10.1007/s11060-021-03928-y