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. Published by Oxford University Press 2021.
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. Published by Oxford University Press 2021.
Authors: Hyun Sik Kim; Mi Jung Kwon; Joon Ho Song; Eun Soo Kim; Ho Young Kim; Kyueng-Whan Min Journal: Pathol Res Pract Date: 2018-04-05 Impact factor: 3.250
Authors: Stuart A Grossman; Xiaobu Ye; Steven Piantadosi; Serena Desideri; Louis B Nabors; Myrna Rosenfeld; Joy Fisher Journal: Clin Cancer Res Date: 2010-04-06 Impact factor: 12.531
Authors: Mary Pat Lovely; Christina Stewart-Amidei; Margaretta Page; Kathleen Mogensen; Jean Arzbaecher; Kathleen Lupica; Mary Ellen Maher Journal: Oncol Nurs Forum Date: 2013-05-01 Impact factor: 2.172
Authors: David A Schomas; Nadia N Issa Laack; Ravi D Rao; Fredric B Meyer; Edward G Shaw; Brian Patrick O'Neill; Caterina Giannini; Paul D Brown Journal: Neuro Oncol Date: 2008-11-18 Impact factor: 12.300
Authors: Eric L Chang; Jeffrey S Wefel; Kenneth R Hess; Pamela K Allen; Frederick F Lang; David G Kornguth; Rebecca B Arbuckle; J Michael Swint; Almon S Shiu; Moshe H Maor; Christina A Meyers Journal: Lancet Oncol Date: 2009-10-02 Impact factor: 41.316
Authors: Danielle M Burgenske; Jie Yang; Paul A Decker; Thomas M Kollmeyer; Matthew L Kosel; Ann C Mladek; Alissa A Caron; Rachael A Vaubel; Shiv K Gupta; Gaspar J Kitange; Hugues Sicotte; Ryan S Youland; Dioval Remonde; Jesse S Voss; Emily G Barr Fritcher; Kathryn L Kolsky; Cristiane M Ida; Fredric B Meyer; Daniel H Lachance; Ian J Parney; Benjamin R Kipp; Caterina Giannini; Erik P Sulman; Robert B Jenkins; Jeanette E Eckel-Passow; Jann N Sarkaria Journal: Neuro Oncol Date: 2019-11-04 Impact factor: 13.029
Authors: Daan Brandenbarg; Saskia W M C Maass; Olaf P Geerse; Mariken E Stegmann; Charlotte Handberg; Maya J Schroevers; Saskia F A Duijts Journal: Eur J Cancer Care (Engl) Date: 2019-05-14 Impact factor: 2.328
Authors: James L Rogers; Julianie De La Cruz Minyety; Elizabeth Vera; Alvina A Acquaye; Samuel S Payén; Jeffrey S Weinberg; Terri S Armstrong; Shiao-Pei S Weathers Journal: Neurooncol Pract Date: 2022-02-17