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. 2021 Apr 10;8(4):460-474.
doi: 10.1093/nop/npab022. eCollection 2021 Aug.

Living with a central nervous system (CNS) tumor: findings on long-term survivorship from the NIH Natural History Study

James L Rogers  1 , Elizabeth Vera  1 , Alvina Acquaye  1 , Nicole Briceno  1 , Varna Jammula  1 , Amanda L King  1 , Heather Leeper  1 , Martha M Quezado  2 , Javier Gonzalez Alarcon  1 , Lisa Boris  3 , Eric Burton  1 , Orieta Celiku  1 , Anna Choi  1 , Alexa Christ  1 , Sonja Crandon  1 , Ewa Grajkowska  1 , Nicole Leggiero  4 , Nicole Lollo  1 , Marta Penas-Prado  1 , Jennifer Reyes  1 , Christine Siegel  3 , Brett J Theeler  5 , Michael Timmer  1 , Kathleen Wall  3 , Jing Wu  1 , Kenneth Aldape  2 , Mark R Gilbert  1 , Terri S Armstrong  1
Affiliations

Living with a central nervous system (CNS) tumor: findings on long-term survivorship from the NIH Natural History Study

James L Rogers et al. Neurooncol Pract. .

Abstract

Background: Primary central nervous system (CNS) tumors are often associated with high symptom burden and a poor prognosis from the time of diagnosis. The purpose of this study is to describe patient-reported outcomes (PRO) data from long-term survivors (LTS; ≥5-year survival post-diagnosis).

Methods: Clinical/treatment/molecular characteristics and PROs (symptom burden/interference (MDASI-BT/SP), perceived cognition (Neuro-QoL), anxiety/depression (PROMIS), and general health status (EQ-5D-3L)) were collected on 248 adult LTS between 9/2016 and 8/2019. Descriptive statistics and regression analysis were used to report results.

Results: Participants had a median age of 47 years (19-82) and were primarily White (83%) males (51%) with high-grade tumors (59%) and few mutations. Forty-two percent of the 222 brain tumor LTS reported no moderate-to-severe symptoms, whereas 45% reported three or more; most common symptoms were fatigue (40%), difficulty remembering (29%), and drowsiness (28%). Among spine tumor LTS (n = 42), nearly half reported moderate-to-severe weakness, pain, fatigue, and numbness/tingling, with 72% experiencing activity-related interference. Severe anxiety, depression, and cognitive symptoms were reported in up to 23% of the sample. Brain tumor LTS at higher risk for severe symptoms were more likely to be young, unemployed, and have poor KPS (Karnofsky Performance Status), whereas high symptom-risk spinal cord tumor LTS had poor KPS and received any tumor treatment.

Conclusions: Findings indicate LTS fall into distinct cohorts with no significant symptoms or very high symptom burden, regardless of tumor grade or mutational profile. These LTS data demonstrate the need for survivorship care programs and future studies to explore the symptom trajectory of all CNS tumor patients for prevention and early interventions.

Keywords: CNS tumor; long-term survivor; patient-reported outcomes; survivorship; symptom burden.

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Figures

Figure 1.
Figure 1.
Distribution of survivorship years, n = 248.
Figure 2.
Figure 2.
Schematic of the LTS cohort tumor tissue and CNS panel result availability. Abbreviations: CNS, central nervous system; LTS, long-term survivors.
Figure 3.
Figure 3.
Number of mutations in pre-treatment tissue.
See this image and copyright information in PMC

References

    1. National Cancer Institute. Surveillance, Epidemiology, and End Results (SEER) Program. Bethesda, MD: DCCPS, National Cancer Institute; 2018.
    1. Armstrong TS, Vera-Bolanos E, Acquaye AA, et al. . The symptom burden of primary brain tumors: evidence for a core set of tumor- and treatment-related symptoms. Neuro Oncol. 2016;18(2):252–260. - PMC - PubMed
    1. Aldape K, Brindle KM, Chesler L, et al. . Challenges to curing primary brain tumours. Nat Rev Clin Oncol. 2019;16(8):509–520. - PMC - PubMed
    1. Mucha-Małecka A, Gliński B, Hetnał M, et al. . Long-term follow-up in adult patients with low-grade glioma (WHO II) postoperatively irradiated. Analysis of prognostic factors. Rep Pract Oncol Radiother. 2012;17(3):141–145. - PMC - PubMed
    1. Schomas DA, Laack NN, Rao RD, et al. . Intracranial low-grade gliomas in adults: 30-year experience with long-term follow-up at Mayo Clinic. Neuro Oncol. 2009;11(4):437–445. - PMC - PubMed