Clinical presentation and outcomes for adult ependymoma patients.
Outcomes projects can be a catalyst for determining disease- and treatment-related consequences for patients with rare tumors. The Adult Ependymoma Outcomes (AEO) survey uses self-reported experience to evaluate how this tumor affects patient groups throughout the illness trajectory.



Patients completed the AEO survey via a Web-based portal. The survey included questions on treatment, tumor recurrence, and current health status; the MD Anderson Symptom Inventory Brain Tumor and Spine Tumor modules; and the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36).



The sample included 264 participants (57% female) with a median age of 46 years (range, 18-77 years). Radiation treatment was commonly used for patients who had brain involvement (χ2(1) = 20.7; P < .001), underwent a partial resection (43%; χ2(3) = 15.4; P < .001), or had a grade 3 tumor (41%; χ2(2) = 18.8; P < .001). Recurrence occurred in a small group (29%), with grade 1 tumor patients 2.6 times more likely and grade 3 tumor patients 2.5 times more likely to experience recurrence than those with grade 2 tumors. Spine tumor patients had a higher symptom burden (mean, 2.8; scale, 0-10) than brain tumor patients (t(247) = -4.0), and they reported more moderate to severe symptoms (rating ≥ 5; 29%) than their counterparts (18%). Within the physical health portion of the SF-36, spine tumor patients reported worse health with respect to bodily pain (t(249) = 6.8; P < .001), physical functioning (t(252) = 4.1; P < .001), and vitality (t(202.2) = 3.0; P < .003).



These results demonstrate the feasibility of implementing outcomes projects that report on the clinical and demographic characteristics of a rare patient population, and they underscore the importance of outcomes data in understanding disease-related issues. Cancer 2017;123:494-501. © 2016 American Cancer Society.
University of Texas Health Science Center, Houston, Texas.
Alvina A
AA
Acquaye
University of Texas Health Science Center, Houston, Texas.
Elizabeth
E
Vera
National Institutes of Health, Bethesda, Maryland.
Mark R
MR
Gilbert
University of Texas Health Science Center, Houston, Texas.
Terri S
TS
Armstrong
D000293:Adolescent; D000328:Adult; D000368:Aged; D001932:Brain Neoplasms / Q000453:epidemiology* / Q000473:pathology / Q000628:therapy; D004806:Ependymoma / Q000453:epidemiology* / Q000473:pathology / Q000628:therapy; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D009364:Neoplasm Recurrence, Local / Q000453:epidemiology* / Q000473:pathology / Q000628:therapy; D017063:Outcome Assessment, Health Care; D011788:Quality of Life; D013120:Spinal Cord Neoplasms / Q000453:epidemiology* / Q000473:pathology / Q000628:therapy; D011795:Surveys and Questionnaires; D055815:Young Adult
cancer treatment; central nervous system; ependymoma; quality of life; symptoms
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