Journal of Neuro-Oncology

, Volume 126, Issue 1, pp 127–135 | Cite as

Illness intrusiveness and subjective well-being in patients with glioblastoma

  • Kim EdelsteinEmail author
  • Linda Coate
  • Christine Massey
  • Natalie C. Jewitt
  • Warren P. Mason
  • Gerald M. Devins
Clinical Study


Glioblastoma (GBM) is the most common adult CNS malignancy but its impact on quality of life (QOL) is poorly understood. In other patient populations, illness intrusiveness (the extent to which disease and treatment disrupts valued activities and interests) is associated with low subjective well-being, after controlling for disease and treatment variables. In this cross-sectional cohort study, we examined the relations among illness intrusiveness, disease burden, and subjective well-being in GBM. 73 GBM patients completed validated self-report measures of depression, positive affect, illness intrusiveness, and health-related QOL. Responses were compared to data from six other cancer groups using repeated measures analyses of variance. Hierarchical multiple-regression analyses tested the hypothesis that illness intrusiveness accounts for well-being after controlling for the effects of disease burden. GBM patients reported less positive affect, more depression, and more illness intrusiveness than people with other cancers. Illness intrusiveness correlated with depression and (low) positive affect. Associations among cancer symptoms, depression, and positive affect decreased when illness intrusiveness was added to regression equations. Good performance status and high cancer-symptom burden were associated with illness intrusiveness and depression. GBM patients report greater distress, lower positive affect, and more illness intrusiveness than people with other cancers. Subjective well-being is mediated in part by illness intrusiveness in this population. In addition to medical treatment, efforts to help patients remain engaged in valued activities and interests may help preserve QOL after the diagnosis of a GBM.


Brain tumor GBM High grade glioma Disease burden Psychosocial Quality of life Mood 



This work was funded in part by the Kirchmann Family Chair in Neuro-Oncology Research and the Ontario Ministry of Health and Long Term Care. The views expressed do not necessarily reflect those of the OMOHLTC.

Compliance with ethical standards

Conflicts of interest

The authors have no financial or other conflicts of interest to disclose.


  1. 1.
    CBTRUS. CBTRUS Statistic Report: primary brain and central nervous system tumors diagnosed in the United States in 2004–2006. Hinsdale, IL: Central Brain Tumor Registry of the United States, 2010Google Scholar
  2. 2.
    Liu R, Page M, Solheim K, Fox S, Chang SM (2009) Quality of life in adults with brain tumors: current knowledge and future directions. Neuro Oncol 11(3):330–339PubMedCentralPubMedCrossRefGoogle Scholar
  3. 3.
    Stupp R, Hegi ME, Mason WP et al (2009) Effects of radiotherapy with concomitant and adjuvant temozolomide versus radiotherapy alone on survival in glioblastoma in a randomised phase III study: 5-year analysis of the EORTC-NCIC trial. Lancet Oncol 10(5):459–466PubMedCrossRefGoogle Scholar
  4. 4.
    Hart MG, Grant R, Garside R, Rogers G, Somerville M, Stein K (2008) Temozolomide for high grade glioma. Cochrane Database Syst Rev 4:Cd007415PubMedGoogle Scholar
  5. 5.
    Hart MG, Garside R, Rogers G, Stein K, Grant R (2013) Temozolomide for high grade glioma. Cochrane Database Syst Rev 4:Cd007415PubMedGoogle Scholar
  6. 6.
    Taphoorn MJ, Stupp R, Coens C et al (2005) Health-related quality of life in patients with glioblastoma: a randomised controlled trial. Lancet Oncol 6(12):937–944PubMedCrossRefGoogle Scholar
  7. 7.
    Henriksson R, Asklund T, Poulsen HS (2011) Impact of therapy on quality of life, neurocognitive function and their correlates in glioblastoma multiforme: a review. J Neurooncol 104(3):639–646PubMedCentralPubMedCrossRefGoogle Scholar
  8. 8.
    Armstrong TS, Mendoza T, Gning I et al (2006) Validation of the M.D. Anderson symptom inventory brain tumor module (MDASI-BT). J Neurooncol 80(1):27–35PubMedCrossRefGoogle Scholar
  9. 9.
    Armstrong TS, Vera-Bolanos E, Gning I et al (2011) The impact of symptom interference using the MD Anderson symptom inventory-brain tumor module (MDASI-BT) on prediction of recurrence in primary brain tumor patients. Cancer 117(14):3222–3228PubMedCrossRefGoogle Scholar
  10. 10.
    Armstrong TS, Vera-Bolanos E, Acquaye AA, Gilbert MR, Ladha H, Mendoza T (2015) The symptom burden of primary brain tumors: evidence for a core set of tumor and treatment-related symptoms. Neuro Oncol. doi: 10.1093/neuonc/nov166 Google Scholar
  11. 11.
    Lee JH, Jung TY, Jung S et al (2013) Performance status during and after radiotherapy plus concomitant and adjuvant temozolomide in elderly patients with glioblastoma multiforme. J Clin Neurosci 20(4):503–508PubMedCrossRefGoogle Scholar
  12. 12.
    Chaichana KL, Halthore AN, Parker SL et al (2011) Factors involved in maintaining prolonged functional independence following supratentorial glioblastoma resection. Clinical article. J Neurosurg 114(3):604–612PubMedCentralPubMedCrossRefGoogle Scholar
  13. 13.
    Jones LW, Cohen RR, Mabe SK et al (2009) Assessment of physical functioning in recurrent glioma: preliminary comparison of performance status to functional capacity testing. J Neurooncol 94(1):79–85PubMedCrossRefGoogle Scholar
  14. 14.
    Recht L, Glantz M, Chamberlain M, Hsieh CC (2003) Quantitative measurement of quality outcome in malignant glioma patients using an independent living score (ILS). Assessment of a retrospective cohort. J Neurooncol 61(2):127–136PubMedCrossRefGoogle Scholar
  15. 15.
    Aaronson NK, Ahmedzai S, Bergman B et al (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85(5):365–376PubMedCrossRefGoogle Scholar
  16. 16.
    Osoba D, Aaronson NK, Muller M et al (1996) The development and psychometric validation of a brain cancer quality-of-life questionnaire for use in combination with general cancer-specific questionnaires. Qual Life Res 5(1):139–150PubMedCrossRefGoogle Scholar
  17. 17.
    Weitzner MA, Meyers CA, Gelke CK, Byrne KS, Cella DF, Levin VA (1995) The functional assessment of cancer therapy (FACT) scale. Development of a brain subscale and revalidation of the general version (FACT-G) in patients with primary brain tumors. Cancer 75(5):1151–1161PubMedCrossRefGoogle Scholar
  18. 18.
    Chow R, Lao N, Popovic M et al (2014) Comparison of the EORTC QLQ-BN20 and the FACT-Br quality of life questionnaires for patients with primary brain cancers: a literature review. Support Care Cancer 22(9):2593–2598PubMedCrossRefGoogle Scholar
  19. 19.
    Wefel JS, Cloughesy T, Zazzali JL et al (2011) Neurocognitive function in patients with recurrent glioblastoma treated with bevacizumab. Neuro Oncol 13(6):660–668PubMedCentralPubMedCrossRefGoogle Scholar
  20. 20.
    Meyers CA, Hess KR (2003) Multifaceted end points in brain tumor clinical trials: cognitive deterioration precedes MRI progression. Neuro Oncol 5(2):89–95PubMedCentralPubMedGoogle Scholar
  21. 21.
    Meyers CA, Hess KR, Yung WK, Levin VA (2000) Cognitive function as a predictor of survival in patients with recurrent malignant glioma. J Clin Oncol 18(3):646–650PubMedGoogle Scholar
  22. 22.
    Bradburn N (1969) The structure of psychological well-being. Aldine, ChicagoGoogle Scholar
  23. 23.
    Devins GM (2010) Using the illness intrusiveness ratings scale to understand health-related quality of life in chronic disease. J Psychosom Res 68(6):591–602PubMedCrossRefGoogle Scholar
  24. 24.
    Devins GM, Bezjak A, Mah K, Loblaw DA, Gotowiec AP (2006) Context moderates illness-induced lifestyle disruptions across life domains: a test of the illness intrusiveness theoretical framework in six common cancers. Psychooncology 15(3):221–233PubMedCrossRefGoogle Scholar
  25. 25.
    Oken MM, Creech RH, Tormey DC et al (1982) Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol 5(6):649–655PubMedCrossRefGoogle Scholar
  26. 26.
    Krull KR, Gioia G, Ness KK et al (2008) Reliability and validity of the Childhood cancer survivor study neurocognitive questionnaire. Cancer 113(8):2188–2197PubMedCentralPubMedCrossRefGoogle Scholar
  27. 27.
    Radloff L (1977) The CES–D scale: a self-report depression scale for research in the general population. Appl Psychol Meas 1:385–401CrossRefGoogle Scholar
  28. 28.
    Costello C, Devins G (1988) Screening for stressful life events and chronic difficulties. Can JBehav Sci 20:85–92CrossRefGoogle Scholar
  29. 29.
    Cohen J, Cohen P, West S, Aiken L (2003) Applied multiple regression/correlation analysis for the behavioral sciences, 3rd edn. Lawrence Erlbaum Associates, MahwahGoogle Scholar
  30. 30.
    Kanter C, Daniels M, Stone A, Edelstein K, D’Agostino N (2010) A demographic and thematic overview of the brain tumour patient and caregiver support groups at Princess Margaret Hospital. Psycho-Oncology 19(Suppl. 2):S231Google Scholar
  31. 31.
    Devins GM, Edworthy SM, Seland TP, Klein GM, Paul LC, Mandin H (1993) Differences in illness intrusiveness across rheumatoid arthritis, end-stage renal disease, and multiple sclerosis. J Nerv Ment Dis 181(6):377–381PubMedCrossRefGoogle Scholar
  32. 32.
    Devins GM, Edworthy SM, Paul LC et al (1993) Restless sleep, illness intrusiveness, and depressive symptoms in three chronic illness conditions: rheumatoid arthritis, end-stage renal disease, and multiple sclerosis. J Psychosom Res 37(2):163–170PubMedCrossRefGoogle Scholar
  33. 33.
    Snyder S, Foley FW, Farrell E, Beier M, Zemon V (2013) Psychological and physical predictors of illness intrusiveness in patients with multiple sclerosis. J Neurol Sci 332(1–2):41–44PubMedCrossRefGoogle Scholar
  34. 34.
    Shawaryn MA, Schiaffino KM, LaRocca NG, Johnston MV (2002) Determinants of health-related quality of life in multiple sderosis: the role of illness intrusiveness. Mult Scler 8(4):310–318PubMedCrossRefGoogle Scholar
  35. 35.
    Turpin KV, Carroll LJ, Cassidy JD, Hader WJ (2007) Deterioration in the health-related quality of life of persons with multiple sclerosis: the possible warning signs. Mult Scler 13(8):1038–1045PubMedCrossRefGoogle Scholar
  36. 36.
    Poochikian-Sarkissian S, Sidani S, Wennberg RA, Devins GM (2008) Psychological impact of illness intrusiveness in epilepsy—comparison of treatments. Psychol Health Med 13(2):129–145PubMedCrossRefGoogle Scholar
  37. 37.
    Klein M, Reijneveld JC, Heimans JJ (2008) Subjective ratings versus objective measurement of cognitive function: in regard to Van Beek et al. (Int J Radiat Oncol Biol Phys 2007; 68:986–991). Int J Radiat Oncol Biol Phys. United States, 70: 961–962; author reply 962Google Scholar
  38. 38.
    Gehring K, Sitskoorn MM, Gundy CM et al (2009) Cognitive rehabilitation in patients with gliomas: a randomized, controlled trial. J Clin Oncol 27(22):3712–3722PubMedCrossRefGoogle Scholar
  39. 39.
    Edelstein K, Bernstein LJ (2014) Cognitive dysfunction after chemotherapy for breast cancer. J Int Neuropsychol Soc 20(4):351–356PubMedCrossRefGoogle Scholar
  40. 40.
    Hermelink K, Kuchenhoff H, Untch M et al (2010) Two different sides of ‘chemobrain’: determinants and nondeterminants of self-perceived cognitive dysfunction in a prospective, randomized, multicenter study. Psychooncology 19(12):1321–1328PubMedCrossRefGoogle Scholar
  41. 41.
    Kelvin JF, Steed R, Jarrett J (2014) Discussing safe sexual practices during cancer treatment. Clin J Oncol Nurs 18(4):449–453PubMedCrossRefGoogle Scholar
  42. 42.
    Surbeck W, Herbet G, Duffau H (2015) Sexuality after surgery for diffuse low-grade glioma. Neuro Oncol 17(4):574–579PubMedCrossRefGoogle Scholar
  43. 43.
    Krychman ML, Amsterdam A, Carter J, Castiel M, DeAngelis L (2004) Brain cancer and sexual health: a case report. Palliat Support Care 2(3):315–318PubMedCrossRefGoogle Scholar
  44. 44.
    Khan F, Amatya B, Ng L, Drummond K, Olver J (2013) Multidisciplinary rehabilitation after primary brain tumour treatment. Cochrane Database Syst Rev 1:Cd009509PubMedGoogle Scholar
  45. 45.
    Addeo R, Perri F, Parlato C, Della Vittoria G (2014) ASCO 2013: bevacizumab and glioblastoma—a marriage dissolution? Curr Med Res Opin 30:1871–1873PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2015

Authors and Affiliations

  • Kim Edelstein
    • 1
    • 2
    • 5
    Email author
  • Linda Coate
    • 7
  • Christine Massey
    • 4
  • Natalie C. Jewitt
    • 1
  • Warren P. Mason
    • 1
    • 3
    • 6
  • Gerald M. Devins
    • 2
    • 5
  1. 1.Pencer Brain Tumor CentrePrincess Margaret Cancer CentreTorontoCanada
  2. 2.Psychosocial Oncology & Palliative CarePrincess Margaret Cancer CentreTorontoCanada
  3. 3.Hematology OncologyPrincess Margaret Cancer CentreTorontoCanada
  4. 4.BiostatisticsPrincess Margaret Cancer CentreTorontoCanada
  5. 5.PsychiatryUniversity of TorontoTorontoCanada
  6. 6.NeurologyUniversity of TorontoTorontoCanada
  7. 7.Medical Oncology, Mid-western Cancer CentreUniversity Hospital LimerickLimerickIreland

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