Journal of Neuro-Oncology

, Volume 121, Issue 2, pp 341–348 | Cite as

Symptoms and socio-economic impact of ependymoma on adult patients: results of the Adult Ependymoma Outcomes Project 2

  • Tobias Walbert
  • Tito R. Mendoza
  • Elizabeth Vera-Bolaños
  • Alvina Acquaye
  • Mark R. Gilbert
  • Terri S. Armstrong
Clinical Study


Ependymoma is a rare central nervous system tumor of adults. Reports of patient symptoms, interference patterns and costs encountered by patients and families are limited. Adult ependymoma patients completed the online Ependymoma Outcomes Questionnaire II. The survey assesses disease and functional status as well as socio-economic factors. Descriptive statistics were used to report disease characteristics as well as economic and social impact. Independent samples t test was used to test if differences exist between high- and low-income groups in terms of symptom severity. Correlations were calculated between symptoms and cost estimates. 86 international patients participated (male = 50 %). The economic analysis focused on 78 respondents from the US. 48 % were employed and 55 % earned ≥$60,000. Tumors were located in the brain (44 %), spine (44 %) or both (12 %). Spine patients compared to brain patients reported significantly worse pain (4.4 versus 2.2, p < .003), numbness (5.3 versus 2.2, p < .001), fatigue (5.1 versus 3.6, p < .03), changes in bowel patterns (3.8 versus 1.4, p < .003) and weakness (4.2 versus 2.1, p < .006). Brain patients compared with spine patients had increased lack of appetite (.4 versus 2, p < .014). Patients with lower income (≤$59,999) had more problems concentrating (p < .024) and worse cognitive module severity scores (p < .024). Estimated average monthly out-of-pocket spending was $168 for medical co-pays and $59 for prescription medication. Patients with ependymoma are highly affected by their symptoms. Spinal patients report higher severity of symptoms. Patients in the lower income group report significantly higher severity of cognitive symptoms independent of disease site.


Central nervous system Ependymoma Tumor Symptoms Quality of life Cost Socio-economic 



The work was supported by the Collaborative Ependymoma Research Network (CERN Foundation).

Conflict of interest

The authors make no disclosures.


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Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Tobias Walbert
    • 1
  • Tito R. Mendoza
    • 4
  • Elizabeth Vera-Bolaños
    • 3
  • Alvina Acquaye
    • 3
  • Mark R. Gilbert
    • 3
  • Terri S. Armstrong
    • 2
    • 3
  1. 1.Department of Neurosurgery and NeurologyHenry Ford Health System DetroitDetroitUSA
  2. 2.Department of Family HealthThe University of Texas Health Science Center-Houston School of NursingHoustonUSA
  3. 3.Department of Neuro-OncologyUniversity of Texas MD Anderson Cancer CenterHoustonUSA
  4. 4.Department of Symptom ResearchUniversity of Texas MD Anderson Cancer CenterHoustonUSA

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