Journal of Neuro-Oncology

, Volume 111, Issue 3, pp 355–366 | Cite as

Factors associated with long-term functional outcomes, psychological sequelae and quality of life in persons after primary brain tumour

Clinical Study


To examine factors impacting long-term functional outcomes and psychological sequelae in persons with primary brain tumours (BT) in an Australian community cohort. Participants (n = 106) following definitive treatment for BT in the community were reviewed in rehabilitation clinics to assess impact on participants’ current activity and restriction in participation, using validated questionnaires: Functional Independence Measure (FIM), Perceived Impact Problem Profile (PIPP), Depression Anxiety Stress Scale, Cancer Rehabilitation Evaluation SystemShort Form and Cancer Survivor Unmet Needs Measure. Mean age of the participants was 51 years (range 21–77 years), majority were female (56 %) with median time since BT diagnosis 2.1 years and a third (39 %) had high grade tumours. Majority showed good functional recovery (median motor FIM score 75). Over half reported pain (56 %), of which 42 % had headaches. Other impairments included: ataxia (44 %), seizures (43 %); paresis (37 %), cognitive dysfunction (36 %) and visual impairment (35 %). About 20 % reported high levels of depression, compared with only 13 % in an Australian normative sample. Two-third (60 %) participants reported highest impact on the PIPP subscales for psychological wellbeing (scores of >3 on 6-point scale) and participation (45 %). Factors significantly associated with poorer current level of functioning and wellbeing included: younger participants (≤40 years), recent diagnoses, aggressive tumour types and presence of pain. No significant differences in scale scores were found across various treatments (surgery, chemotherapy or radiotherapy) on outcomes used. Rehabilitation for BT survivors is challenging and requires long-term management of psychological sequelae impacting activity and participation. More research into participatory limitation is needed to guide treating clinicians.


Brain tumour Rehabilitation Disability Participation Quality of life Function 


  1. 1.
    Arber A, Faithfull S, Plaskota M, Lucas C, de Vries K (2010) A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services. Int J Palliat Nurs 16(1):24–30PubMedGoogle Scholar
  2. 2.
    Parkin DM, Whelan SL, Ferlay J (2005) Cancer incidence in five continents, vol I–VIII. IARC Cancerbase no 7. LyonGoogle Scholar
  3. 3.
    Flowers A (2000) Brain tumors in the older person. Cancer Control 7(6):523–538PubMedGoogle Scholar
  4. 4.
    Jemal A, Siegel R, Ward E, Hao Y, Xu J, Thun MJ (2009) Cancer statistics. CA Cancer J Clin 59(4):225–249PubMedCrossRefGoogle Scholar
  5. 5.
    Brain Foundation (2011) Brain tumour and brain cancer. Accessed 2 June 2012
  6. 6.
    Huang ME, Sliwa JA (2011) Inpatient rehabilitation of patients with cancer: efficacy and treatment considerations. PM R 3(8):746–757PubMedGoogle Scholar
  7. 7.
    Poggi G, Liscio M, Pastore V et al (2009) Psychological intervention in young brain tumor survivors: the efficacy of the cognitive behavioural approach. Disabil Rehabil 31(13):1066–1073PubMedCrossRefGoogle Scholar
  8. 8.
    Tang V, Rathbone M, Park Dorsay J, Jiang S, Harvey D (2008) Rehabilitation in primary and metastatic brain tumours: impact of functional outcomes on survival. J Neurol 255(6):820–827PubMedCrossRefGoogle Scholar
  9. 9.
    Aziz NM, Rowland JH (2003) Trends and advances in cancer survivorship research: challenge and opportunity. Semin Radiat Oncol 13(3):248–266PubMedCrossRefGoogle Scholar
  10. 10.
    Ownsworth T, Hawkes A, Steginga S, Walker D, Shum D (2009) A biopsychosocial perspective on adjustment and quality of life following brain tumor: a systematic evaluation of the literature. Disabil Rehabil 31(13):1038–1055PubMedCrossRefGoogle Scholar
  11. 11.
    Ness KK, Morris EB, Nolan VG et al (2010) Physical performance limitations among adult survivors of childhood brain tumors. Cancer 116(12):3034–3044PubMedCrossRefGoogle Scholar
  12. 12.
    Gabanelli P (2005) A rehabilitative approach to the patient with brain cancer. Neurol Sci 26(Suppl 1):S51–S52PubMedCrossRefGoogle Scholar
  13. 13.
    Kleihues P, Burger PC, Scheithauer B (1993) The new WHO classification of brain tumours. Brain Pathol 3:255–268PubMedCrossRefGoogle Scholar
  14. 14.
    World Health Organization (2001) International Classification of Functioning, Disability, and Health (ICF). WHO, GenevaGoogle Scholar
  15. 15.
    Wewers ME, Lowe NK (1990) A critical review of visual analogue scales in the measurement of clinical phenomena. Res Nurs Health 13(4):227–236PubMedCrossRefGoogle Scholar
  16. 16.
    Paternostro-Sluga T, Grim-Stieger M, Posch M et al (2008) Reliability and validity of the Medical Research Council (MRC) scale and a modified scale for testing muscle strength in patients with radial palsy. J Rehabil Med 40(8):665–671PubMedCrossRefGoogle Scholar
  17. 17.
    Granger C (1998) The emerging science of functional assessment: our tool for outcomes analysis. Arch Phys Med Rehabil 79:235–240PubMedCrossRefGoogle Scholar
  18. 18.
    Hamilton BB, Granger CV, Sherwin FS, Zielezny M, Tashman JS (1987) A uniform national data system for medical rehabilitation. In: Fuhrer MJ (ed) Rehabilitation outcomes: analysis and measurement. Brookes, Baltimore, pp 137–147Google Scholar
  19. 19.
    Heinemann AW, Linacre JM, Wright BD, BB H, Granger C (1993) Relationships between impairment and physical disability as measured by the functional independence measure. Arch Phys Med Rehabil 74:566–573PubMedCrossRefGoogle Scholar
  20. 20.
    Lovibond SH, Lovibond PF (1995) Manual for the depression, anxiety, stress scales. The Psychology Foundation of Australia Inc., SydneyGoogle Scholar
  21. 21.
    Pallant JF (2000) Development and validation of a scale to measure perceived control of internal states. J Pers Assess 75(2):308–337PubMedCrossRefGoogle Scholar
  22. 22.
    Ganz PA, Schag CA, Lee TJ, Sims M (1992) The CARES: a generic measure of health related quality of life for patients with cancer. Qual Life Res 1:19–29PubMedCrossRefGoogle Scholar
  23. 23.
    Hodgkinson K, Butow P, Hunt G, Pendlebury S, Hobbs K, Wain G (2007) Breast cancer survivors supportive care needs 2–10 years after diagnosis. Support Care Cancer 15:515–523PubMedCrossRefGoogle Scholar
  24. 24.
    Bartolo M, Zucchella C, Pace A et al (2012) Early rehabilitation after surgery improves functional outcome in inpatients with brain tumours. J Neurooncol 107(3):537–544PubMedCrossRefGoogle Scholar
  25. 25.
    Huang ME, Cifu DX, Keyser-Marcus L (2000) Functional outcomes in patients with brain tumor after inpatient rehabilitation: comparison with traumatic brain injury. Am J Phys Med Rehabil 79(4):327–335PubMedCrossRefGoogle Scholar
  26. 26.
    Huang ME, Wartella JE, Kreutzer JS (2001) Functional outcomes and quality of life in patients with brain tumors: a preliminary report. Arch Phys Med Rehabil 82(11):1540–1546PubMedCrossRefGoogle Scholar
  27. 27.
    Geler-Kulcu D, Gulsen G, Buyukbaba E, Ozkan D (2009) Functional recovery of patients with brain tumor or acute stroke after rehabilitation: a comparative study. J Clin Neurosci 16(1):74–78PubMedCrossRefGoogle Scholar
  28. 28.
    Greenberg E, Treger I, Ring H (2006) Rehabilitation outcomes in patients with brain tumors and acute stroke: comparative study of inpatient rehabilitation. Am J Phys Med Rehabil 85(7):568–573PubMedCrossRefGoogle Scholar
  29. 29.
    Whitton AC, Rhydderch H, Furlong W, Feeny D, Barr RD (1997) Self-reported comprehensive health status of adult brain tumor patients using the Health Utilities Index. Cancer 80(2):258–265PubMedCrossRefGoogle Scholar
  30. 30.
    Franklin DJ (2007) Cancer rehabilitation: challenges, approaches, and new directions. Phys Med Rehabil Clin N Am 18(4):899–924PubMedCrossRefGoogle Scholar
  31. 31.
    Vargo M (2011) Brain tumor rehabilitation. Am J Phys Med Rehabil 90(5 Suppl 1):S50–S62PubMedCrossRefGoogle Scholar
  32. 32.
    Sherwood P, Given B, Given C, Schiffman R, Murman D, Lovely M (2004) Caregivers of persons with a brain tumor: a conceptual model. Nurs Inq 11(1):43–53PubMedCrossRefGoogle Scholar
  33. 33.
    Berard RM, Boermeester F, Viljoen G (1998) Depressive disorders in an out-patient oncology setting: prevalence, assessment, and management. Psychooncology 7(2):112–120PubMedCrossRefGoogle Scholar
  34. 34.
    Payne DK, Hoffman RG, Theodoulou M, Dosik M, Massie MJ (1999) Screening for anxiety and depression in women with breast cancer. Psychiatry and medical oncology gear up for managed care. Psychosomatics 40(1):64–69PubMedCrossRefGoogle Scholar
  35. 35.
    Kirshblum S, O’Dell MW, Ho C, Barr K (2001) Rehabilitation of persons with central nervous system tumors. Cancer 92(4 Suppl):1029–1038PubMedCrossRefGoogle Scholar
  36. 36.
    Bernsen RA, Jacobs HM, de Jager AE, van der Meche FG (1997) Residual health status after Guillain-Barre syndrome. J Neurol Neurosurg Psychiatry 62(6):637–640PubMedCrossRefGoogle Scholar
  37. 37.
    Hjermstad MJ, Evensen SA, Kvaloy SO, Loge JH, Fayers PM, Kaasa S (2003) The CARES-SF used for prospective assessment of health-related quality of life after stem cell transplantation. Psychooncology 12(8):803–813PubMedCrossRefGoogle Scholar
  38. 38.
    Schag CA, Ganz PA, Heinrich RL (1991) Cancer Rehabilitation Evaluation System–Short Form (CARES-SF): a cancer specific rehabilitation and quality of life instrument. Cancer 68(6):1406–1413PubMedCrossRefGoogle Scholar
  39. 39.
    Hodgkinson K, Butow P, Fuchs A et al (2007) Long-term survival from gynecologic cancer: psychosocial outcomes, supportive care needs and positive outcomes. Gynecol Oncol 104(2):381–389PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2013

Authors and Affiliations

  1. 1.Department of RehabilitationRoyal Melbourne HospitalParkvilleAustralia
  2. 2.Department of Medicine, Dentistry & Health SciencesUniversity of MelbourneParkvilleAustralia
  3. 3.School of Public Health and Preventive MedicineMonash UniversityMelbourneAustralia

Personalised recommendations