Symptoms and socio-economic impact of ependymoma on adult patients: results of the Adult Ependymoma Outcomes Project 2
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.
KeywordsCentral 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.
- 1.Ostrom QT, Gittleman H, Farah P, Ondracek A, Chen Y, Wolinsky Y, Stroup NE, Kruchko C, Barnholtz-Sloan JS (2013) CBTRUS statistical report: primary brain and central nervous system tumors diagnosed in the United States in 2006–2010. Neuro-oncol 15(Suppl 2):ii1–ii56. doi: 10.1093/neuonc/not151 PubMedCentralPubMedGoogle Scholar
- 2.Louis DNOH, Wiestler OD, Cavenee WK (2007) Classification of tumours of the nervous system. IARC Press, LyonGoogle Scholar
- 4.Lee SH, Chung CK, Kim CH, Yoon SH, Hyun SJ, Kim KJ, Kim ES, Eoh W, Kim HJ (2013) Long-term outcomes of surgical resection with or without adjuvant radiation therapy for treatment of spinal ependymoma: a retrospective multicenter study by the Korea Spinal Oncology Research Group. Neuro-oncol 15:921–929PubMedCentralPubMedCrossRefGoogle Scholar
- 9.Kucia EJ, Bambakidis NC, Chang SW, Spetzler RF (2011) Surgical technique and outcomes in the treatment of spinal cord ependymomas, part 1: intramedullary ependymomas. Neurosurg 68:57–63; discussion 63Google Scholar
- 11.Kumthekar P, Stell BV, Jacobs D, Helenowski IB, Rademaker AW, Grimm S, Bennett CL, Raizer JJ (2014) Financial burden experienced by patients undergoing treatment for Malignant Gliomas. Neuro-Oncol Pract (in press)Google Scholar
- 13.Armstrong TS, Gning I, Mendoza TR, Vera-Bolanos E, Gilbert MR, Rhines LD, Weinberg JS, Sanchez-Williams G, Levin V, Burton AW, Cleeland C (2010) Reliability and validity of the M. D. Anderson symptom inventory-spine tumor module. J Neurosurg 12:421–430Google Scholar
- 16.DeNavas-Walt C, Proctor BD (2014) Current population reports, P60-249. In: U.S. Department of Commerce USCB (ed) Income and poverty in the United States: 2013. U.S. Government Printing Office, WashingtonGoogle Scholar
- 17.Heese O, Schmidt M, Nickel S, Berger H, Goldbrunner R, Tonn JC, Bahr O, Steinbach JP, Simon M, Schramm J, Krex D, Schackert G, Reithmeier T, Nikkhah G, Loffler M, Weller M, Westphal M (2010) Complementary therapy use in patients with glioma: an observational study. Neurology 75:2229–2235PubMedCrossRefGoogle Scholar