Journal of Cancer Survivorship

, Volume 10, Issue 2, pp 234–240 | Cite as

Late effects in survivors of central nervous system tumors: reports by patients and proxies

  • Kelly Sloane
  • Carolyn Vachani
  • Margaret K. Hampshire
  • James M. Metz
  • Christine E. Hill-Kayser
Article
First Online:
Received:
Accepted:

Abstract

Purpose

With the 5-year survival of patients with brain tumors increasing as treatment modalities are optimized, there are a large number of brain cancer survivors who experience long-term sequelae of their treatment. Patient-reported outcomes represent an important and often unrecorded aspect of survivorship.

Methods

An Internet-based survivorship care plan tool which allowed patients or their proxies to answer a series of questions about the patient’s illness course was used to collect patient-reported toxicity data for 254 individuals who had undergone treatment for brain cancer. Demographic, treatment, and side effect profiles data were reviewed.

Results

Median age of diagnosis was 42 years, and 88 % (n = 223) of the patients were Caucasian. Only 11.1 % (n = 29) had previously been offered a survivorship care plan. Of the total group of brain tumor survivors, 25.4 % of responders described themselves as living with metastatic disease, while 14.5 % of responders were experiencing recurrence status post treatment. Late effects most commonly reported for all brain malignancy survivors using this tool were cognitive changes, fatigue, skin changes, hearing loss, weakness, and numbness. The incidence of late effects varied with age at time of treatment and length of time since treatment.

Conclusions

Individuals undergoing treatment for brain cancers experience a diverse array of long-term sequelae, and the majority of these patients do not have access to or familiarity with a survivorship care plan.

Implications for Cancer Survivors

Patient-focused tools to evaluate these side effects and access to survivorship plans are important for comprehensive reporting of late effects as well as implementation of survivorship care plans for long-term management of these effects. Understanding the late effects that patients experience will help providers council patients regarding expectations prior to treatment, as well as management of symptoms in the survivorship phase of care.

Keywords

Survivorship care plan Patient-reported outcomes Brain tumor Brain radiation Brain surgery 
This is a preview of subscription content, log in to check access.

Notes

Compliance with ethical standards

Acknowledgments

This study was funded in part by a cooperative funding agreement from the LIVESTRONG Foundation.

Conflict of interest

Dr. Sloane declares that she has no conflicts of interest. Ms. Vachani received support from the aforementioned LIVESTRONG funding agreement as Manager of the care plan tool. Ms. Hampshire received support from the aforementioned LIVESTRONG funding agreement as an editor of the care plan tool. Dr. Metz received support from the aforementioned LIVESTRONG funding agreement as Editor-in-Chief of the care plan tool. Dr. Hill-Kayser received support from the aforementioned LIVESTRONG funding agreement as Senior Medical Editor of the care plan tool.

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

Waiver of informed consent was obtained from the Institutional Review Board prior to initiation of any study proceedings.

References

  1. 1.
    Howlader N, Noone AM, Krapcho M, et al. SEER cancer statistics review, 1975–2011. National Cancer Institute. Bethesda, MD. http://seer.cancer.gov/csr/1975_2011.
  2. 2.
    Porter KR, McCarthy BJ, Freels S, Kim Y, Davis FG. Prevalence estimates for primary brain tumors in the United States by age, gender, behavior, and histology. Neuro-Oncology. 2010;12(6):520–7.CrossRefPubMedPubMedCentralGoogle Scholar
  3. 3.
    CBTRUS. CBTRUS statistical report: primary brain and central nervous system tumors diagnosed in the United States in 2005–2009 (November 5, 2012 Revision). Source: Central Brain Tumor Registry of the United States, Hinsdale, IL; 2012 . Website: www.cbtrus.org.
  4. 4.
    Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et al. 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. 1993;85(5):365–76.CrossRefPubMedGoogle Scholar
  5. 5.
    Armstrong TS, Mendoza T, Gning I, Coco C, Cohen MZ, Eriksen L, et al. Validation of the M.D. Anderson symptom inventory brain tumor module (MDASI-BT). J Neuro-Oncol. 2006;80(1):27–35.CrossRefGoogle Scholar
  6. 6.
    Hill-Kayser CE, Vachani CC, Hampshire MK, DiLullo G, Jacobs LA, Metz JA. Impact of internet-based cancer survivorship care plans on health care and lifestyle behaviors. Cancer. 2013;119:3854–60.CrossRefPubMedGoogle Scholar
  7. 7.
    Hill-Kayser CE, Vachani C, Hampshire MK, Jacobs LA, Metz JM. An internet tool for creation of cancer survivorship care plans for survivors and health care providers: design, implementation, use and user satisfaction. Eysenbach G, ed. J Med Internet Res. 2009;11(3):e39. doi: 10.2196/jmir.1223.CrossRefPubMedPubMedCentralGoogle Scholar
  8. 8.
    Heimans JJ, Taphoorn MJ. Impact of brain tumour treatment on quality of life. J Neurol. 2002;249(8):955–60.CrossRefPubMedGoogle Scholar
  9. 9.
    Sizoo EM, Braam L, Postma TJ, Pasman HR, Heimans JJ, Klein M, et al. Symptoms and problems in the end-of-life phase of high-grade glioma patients. Neuro Oncology. 2010;12(11):1162–6.CrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    Laugsand EA, Sprangers MA, Bjordal K, Skorpen F, Kaasa S, Klepstad P. Health care providers underestimate symptom intensities of cancer patients: a multicenter European study. Health Qual Life Outcomes. 2010;8:104.CrossRefPubMedPubMedCentralGoogle Scholar
  11. 11.
    Nekolaichuk CL, Bruera E, Spachynski K, MacEachern T, Hanson J, Maguire TO. A comparison of patient and proxy symptom assessments in advanced cancer patients. Palliat Med. 1999;13(4):311–23.CrossRefPubMedGoogle Scholar
  12. 12.
    Stupp R, Mason WP, van den Bent MJ, Weller M, Fisher B, Taphoorn MJ, et al. Radiotherapy plus concomitant and adjuvant temozolomide for glioblastoma. N Engl J Med. 2005;352(10):987–96.CrossRefPubMedGoogle Scholar
  13. 13.
    Taphoorn MJ, Stupp R, Coens C, Osoba D, Kortmann R, van den Bent MJ, et al. Health-related quality of life in patients with glioblastoma: a randomised controlled trial. Lancet Oncol. 2005;6(12):937–44.CrossRefPubMedGoogle Scholar
  14. 14.
    Bateman E, Keefe D. Patient-reported outcomes in supportive care. Semin Oncol. 2011;38(3):358–61.CrossRefPubMedGoogle Scholar
  15. 15.
    Garcia SF et al. Standardizing patient-reported outcomes assessment in cancer clinical trials: a patient-reported outcomes measurement information system initiative. J Clin Oncol. 2007;25(32):5106–12.CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2015

Authors and Affiliations

  • Kelly Sloane
    • 1
  • Carolyn Vachani
    • 1
  • Margaret K. Hampshire
    • 1
  • James M. Metz
    • 1
  • Christine E. Hill-Kayser
    • 1
    • 2
  1. 1.Perelman School of Medicine at the University of PennsylvaniaPhiladelphiaUSA
  2. 2.Perelman School of Medicine at the University of PennsylvaniaPhiladelphiaUSA

Personalised recommendations