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

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 mutati

SUBMITTER: Rogers JL 

PROVIDER: S-EPMC8278352 | biostudies-literature | 2021 Aug

REPOSITORIES: biostudies-literature