Hostname: page-component-cd9895bd7-jkksz Total loading time: 0 Render date: 2024-12-28T02:14:46.248Z Has data issue: false hasContentIssue false
  • English
  • Français

Coping with the Unthinkable: Psychosocial Advances in the Management of Primary Brain Tumour

Published online by Cambridge University Press:  28 October 2016

Tamara Ownsworth
Tamara Ownsworth*
Affiliation:
School of Applied Psychology and Menzies Health Institute Queensland, Griffith University, Brisbane, Queensland, Australia
*
Address for correspondence: A/Prof Tamara Ownsworth, School of Applied Psychology, Griffith University, Mt Gravatt, 4122, Australia. Ph: +61 73735 3307; Fax: +61 73735 3388. E-mail: t.ownsworth@griffith.edu.au
Get access

Abstract

Brain cancer is a complex and distressing illness with a typically poor prospect for survival. Worldwide, approximately 256,000 people (1800 in Australia) are diagnosed each year (Ferlay, Soerjomataram & Ervik, 2013). Cancer of the brain poses a double threat – to one's survival and sense of self. Most people with primary brain tumour develop serious neuro-cognitive symptoms (e.g., seizures, memory loss) and experience poor mental health and quality of life, which places enormous burden on family care givers. Not surprisingly, high rates of psychological distress have been reported by people with brain tumour and their family care givers. Psychological distress can persist beyond primary treatment, and often increases in the long-term phase of illness due to the perceived threat and experience of recurrence and functional decline. Over the last decade, there have been many advances in the psychosocial management of people with brain tumour. This paper provides an overview of the functional, psychological and social consequences of brain tumour, summarises some leading developments in psychological assessment and management, and outlines future directions in intervention research.

Keywords

Primary brain tumourpsychosocial managementneuro-cognitive symptomsmental healthcoping
Type
ASSBI Presidential Address 2016
Information
Brain Impairment , Volume 17 , Issue 3 , December 2016 , pp. 265 - 272
Copyright
Copyright © Australasian Society for the Study of Brain Impairment 2016 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Aldape, K., Zadeh, G., Mansouri, S., Reifenberger, G., & von Deimling, A. (2015). Glioblastoma: Pathology, molecular mechanisms and markers. Acta Neuropathologica, 129, 829–848.Google Scholar
Antonovsky, A. (1996). The salutogenic model as a theory to guide health promotion. Health Promotion International, 11, 11–18.Google Scholar
Arnold, S.D., Forman, L.M., Brigidi, B.D., Carter, K.E., Schweitzer, H.A., Quinn, H.E.,. . . Raynor, R.H. (2008). Evaluation and characterization of generalized anxiety and depression in patients with primary brain tumors. Neuro-Oncology, 10, 171–181. doi: 10.1215/15228517-2007-057.Google Scholar
Australian Institute of Health & Welfare (2014). Cancer in Australia: An overview. Cancer series no. 90. Cat. no. CAN 88. Canberra: AIHW.Google Scholar
Boele, F.W., Verdonck-de Leeuw, I.M., Cuijpers, P., Reijneveld, J.C., Heimans, J.J., & Klein, M. (2014). Internet-based guided self-help for glioma patients with depressive symptoms: Design of a randomized controlled trial. BMC Neurology, 14, 81. doi: 10.1186/1471-2377-14-81.CrossRefGoogle ScholarPubMed
Dwan, T.M., Ownsworth, T., Chambers, S., Walker, D.G., & Shum, D.H.K. (2015). Neuropsychological assessment of individuals with brain tumour: Comparison of approaches used in the classification of impairment. Frontiers in Oncology, 5, 56. doi: 10.3389/fonc.2015.00056.Google Scholar
El-Jawahri, A., Podgurski, L.M., Eichler, A.F., Plotkin, S.R., Temel, J.S., Mitchell, S.L., . . . Volandes, A.E. (2010). Use of video to facilitate end-of-life discussions with patients with cancer: A randomized controlled trial. Journal of Clinical Oncology, 28, 305–310. doi: 10.1200/JCO.2009.24.7502.Google Scholar
Ferlay, J., Soerjomataram, I., & Ervik, M. (2013). GLOBOCAN 2012 v1. 0, Cancer Incidence and Mortality Worldwide: IARC Cancer Base No. 10, International Agency for Research on Cancer.Google Scholar
Fuemmeler, B.F., Elkin, D.T., & Mullins, L.L. (2002). Survivors of childhood brain tumors: Behavioral, emotional, and social adjustment. Clinical Psychology Review, 22, 547–585.Google Scholar
Gehring, K., Sitskoorn, M.M., Gundy, C.M., Sikkes, S.A., Klein, M., Postma, T.J., & Aaronson, N.K. (2009). Cognitive rehabilitation in patients with gliomas: A randomized, controlled trial. Journal of Clinical Oncology, 27, 3712–3722. doi: 10.1200/JCO.2008.20.5765.CrossRefGoogle ScholarPubMed
Goebel, S., & Mehdorn, H.M. (2010). Measurement of psychological distress in patients with intracranial tumours: The NCCN distress thermometer. Journal of Neuro-Oncology, 104, 357–364. doi: 10.1007/s11060-010-0501-5.Google Scholar
Holland, J.C., Watson, M., & Dunn, J. (2011). The IPOS new international standard of quality cancer care: Integrating the psychosocial domain into routine care. Psycho-oncology, 20, 677–680. doi: 10.1002/pon.1978.CrossRefGoogle ScholarPubMed
Jones, S., Ownsworth, T., & Shum, D. (2015). Feasibility and utility of telephone-based psychological support for people with brain tumor: A single-case experimental study. Frontiers in Oncology, 5, 71. doi: 10.3389/fonc.2015.00071.Google Scholar
Khan, F., Amatya, B., Drummond, K., & Galea, M. (2014). Effectiveness of integrated multidisciplinary rehabilitation in primary brain cancer survivors in an Australian community cohort: A controlled clinical trial. Journal of Rehabilitation Medicine, 46 (8), 754–760. doi: 10.2340/16501877-1840.Google Scholar
Lamborn, K.R., Yung, W.K., Chang, S.M., Wen, P.Y., Cloughesy, T.F., DeAngelis, L.M.,. . . Prados, M.D. (2008). Progression-free survival: An important end point in evaluating therapy for recurrent high-grade gliomas. Neuro-Oncology, 10, 162–170.Google Scholar
Langbecker, D., & Janda, M. (2015). Systematic review of interventions to improve the provision of information for adults with primary brain tumours and their caregivers. Frontiers in Oncology, 5, 1–11. doi: 10.3389/fonc.2015.00001.Google Scholar
Langbecker, D., & Janda, M., & Yates, P. (2012). Development and piloting of a brain tumour-specific question prompt list. European Journal of Cancer Care, 21, 517–526. doi: 10.1111/j.1365-2354.2012.01328.x.Google Scholar
Lidstone, V., Butters, E., Seed, P.T., Sinnot, C., Beynon, T., & Richards, M. (2003). Symptoms and concerns amongst cancer outpatients: Identifying the need for specialist palliative care. Palliative Medicine, 17, 588–595.Google Scholar
Locke, D., Cerhan, J.H., Wu, W., Malec, J.F., Clark, M.M., Rummans, T.A., & Brown, P.D. (2008). Cognitive rehabilitation and problem-solving to improve quality of life of patients with primary brain tumors: A pilot study. Journal of Supportive Oncology, 6, 383–391.Google ScholarPubMed
Louis, D.N., Ohgaki, H., Wiestler, O.D., Cavenee, W.K., Burger, P.C., Jouvet, A., & Kleihues, P. (2007). The 2007 WHO classification of tumours of the central nervous system. Acta Neuropathologica, 114, 97–109.Google Scholar
Mellado-Calvo, N., & Fleminger, S. (2009). Cerebral tumours . In David, A.S., Fleminger, S., Kopelman, M.D., Lovestone, S. & Mellers, J.D. (Eds.), Lishman's organic psychiatry: A textbook of neuropsychiatry, pp. 281–308 (4th ed.). Singapore: Wiley-Blackwell.Google Scholar
Meyers, C.A., & Brown, P.D. (2006). Role and relevance of neurocognitive assessment in clinical trials of patients with CNS tumors. Journal of Clinical Oncology, 24 (8), 1305–1309.Google Scholar
Noggle, C.A., & Dean, R.S. (Eds.) (2013). The neuropsychology of cancer and oncology. New York, NY: Springer Publishing Company.Google Scholar
Ostrom, Q.T., Gittleman, H., Liao, P., Rouse, C., Chen, Y., Dowling, J., . . . . Barnholtz-Sloan, J. (2014). CBTRUS Statistical report: primary brain and central nervous system tumors diagnosed in the United States in 2007–2011. Neuro-Oncology, 16 (Suppl. 4), iv1–iv63.Google Scholar
Ownsworth, T., Chambers, S., Damborg, E., Casey, L., Walker, D. G., & Shum, D. H. (2015). Evaluation of the making sense of brain tumor program: A randomized controlled trial of a home-based psychosocial intervention. Psychooncology, 24 (5), 540–547. doi: 10.1002/pon.3687.Google Scholar
Ownsworth, T., Chambers, S., Hawkes, A., Walker, D., & Shum, D. (2011). Making sense of brain tumour: A qualitative investigation of personal and social processes of adjustment. Neuropsychological Rehabilitation, 21, 117–137. doi: 10.1080/09602011. 2010.537073.Google Scholar
Ownsworth, T., Chambers, S., Stewart, E., Casey, L., Walker, D., & Shum, D. (2014). Evaluation of the making sense of brain tumor program: A randomized controlled trial of a psychosocial intervention. Psycho-Oncology, 24, 540–547. doi: 10.1002/pon.3687.Google Scholar
Ownsworth, T., Goadby, E., & Chambers, S.K. (2015). Support after brain tumor means different things: Family caregivers’ experiences of support and relationship changes. Frontiers in Oncology, 5, 33. doi: 10.3389/fonc.2015.00033.CrossRefGoogle ScholarPubMed
Ownsworth, T., Hawkes, A., Chambers, S., Walker, D., & Shum, D. (2010). Applying a biopsychosocial perspective to investigate factors related to emotional adjustment and quality of life for individuals with brain tumour. Brain Impairment, 11, 270–280.Google Scholar
Ownsworth, T., Little, T., Turner, B., Hawkes, A., & Shum, D. (2008). Assessing emotional status following acquired brain injury: The clinical potential of the depression, anxiety and stress scales. Brain Injury, 22, 858–869. doi: 10.1080/02699050802446697.Google Scholar
Ownsworth, T., & Nash, K. (2015). Existential well-being and meaning making in the context of primary brain tumor: Conceptualization and implications for intervention. Frontiers in Oncology, 5, 96. doi: 10.3389/fonc.2015.00096.Google Scholar
Ownsworth, T.L., Henderson, L., & Chambers, S. (2010). Social support buffers the impact of functional impairments on caregiver psychological well-being in the context of brain tumor and other cancers. Psycho-Oncology, 19, 1116–1122.Google Scholar
Ownsworth, T.L., Henderson, L., Chambers, S., & Shum, D. (2009). Functional impairments and caregiver depression in the context of brain tumour and other cancers: A mediating effect of strain. Brain Impairment, 10, 149–161.Google Scholar
Pawl, J., Lee, S.Y., Clark, P.C., & Sherwood, P.R. (2013). Sleep characteristics of family caregivers of individuals with a primary malignant brain tumor. Oncology Nursing Forum, 40, 171–179.Google Scholar
Pelletier, G., Verhoef, M.J., Khatri, N., & Nagen, N. (2002). Quality of life in brain tumor patients: The relative contributions of depression, fatigue, emotional distress and existential issues. Journal of Neuro-oncolgy, 57, 41–49. doi: 10.1023/A:1015728825642.Google Scholar
Piil, K., Joakobsen, J., Juhler, M., & Jarden, M. (2015). The feasibility of a brain tumour website. European Journal of Oncology Nursing, 19, 686–693.Google Scholar
Robinson, G.A., Biggs, V., & Walker, D.G. (2015). Cognitive screening in brain tumors: short but sensitive enough? Frontiers in Oncology, 5, 60. doi: 10.3389/fonc.2015.00060.Google Scholar
Salander, P. (2010). Facilitating interventions and/or relationships in malignant brain tumours. Advanced Therapy, 27, 17–27.Google Scholar
Simpson, G.K., Koh, E., Whiting, D., Wright, K.M., Simpson, T., Firth, R., Gillett, L., & Younan, K. (2015). Frequency, clinical correlates, and ratings of behavioural changes in primary brain tumor patients: A preliminary investigation. Frontiers in Oncology, 5, 78. doi: 10.3389/fonc.2015.00078.Google Scholar
Stewart, E., & Ownsworth, T. (2014). Making sense of brain tumour: A practical guide for therapists. Sydney: ASSBI Resources. ISBN: 978-0-9870477-7-9.Google Scholar
Trad, W., Koh, E., Daher, M., Bailey, A., Kastelan, M., Legge, D., . . . Hovey, E. (2015). Screening for psychological distress in adult primary brain tumor patients and caregivers: Considerations for cancer care coordination. Frontiers in Oncology, 5, 2013. doi: 10.3389/fonc.2015.00203.Google Scholar
Van Meir, E.G., Hadjipanayis, C.G., Norden, A.D., Shu, H.K., Wen, P.Y., & Olson, J.J. (2010). Exciting new advances in neuro-oncology: The avenue to a cure for malignant glioma. CA: A Cancer Journal for Clinicians, 60, 166–193.Google Scholar
Wefel, J.S., Vardy, J., Ahles, T., & Schagen, S.B. (2011). International cognition and cancer task force recommendations to harmonise studies of cognitive function in patients with cancer. Lancet Oncology, 12, 703–708. doi: 10.1016/S1470-2045(10)70294-1.Google Scholar
Whiting, D.L., Simpson, G.K., Koh, E.-S., Wright, K.M., Simpson, T., & Firth, R. (2012). A multi- tiered intervention to address behavioural and cognitive changes after diagnosis of primary brain tumour: A feasibility study. Brain Injury, 26, 950–961. doi: 10.3109/02699052.2012.661912.Google Scholar
Zucchella, C., Capone, A., Codella, V., De Nunzio, A.M., Vecchione, C., Sandrini, G., . . . Bartolo, M. (2013). Cognitive rehabilitation for early post-surgery inpatients affected by primary brain tumor: A randomized, controlled trial. Journal of Neuro-oncology, 114, 93–100. doi: 10.1007/s11060-013-1153-z.Google Scholar