title: Glioblastoma multiforme from diagnosis to death: a prospective, hospital-based, cohort, pilot feasibility study of patient reported symptoms and needs.
abstract: OBJECTIVE
  Glioblastoma (GBM) patients have many palliative care (PC) issues. To date, there are no studies examining the prospective usage of validated PC assessment tools as patient reported outcome measures for GBM patients.
  
  
  METHODS
  GBM patients' PC issues were assessed from diagnosis to death or for at least 12 months every 7 weeks (±8 days) using semi-structured interviews and the Hospice and Palliative Care Evaluation (HOPE, including Eastern Cooperative Oncology Group (ECOG) performance status, 17 items) and the Palliative Outcome Scale (POS, 11 items). Data from patients who died within 12 months of the last patient's enrollment were evaluated using summarizing content analysis, visual graphical analysis (VGA), and linear mixed models for repeated measures.
  
  
  RESULTS
  Nineteen of 33 patients screened were enrolled; two dropped out and four were still alive at the end of the study. The remaining 13 were assessed at 59 points until death (time range 4-68 weeks; 1-10 contacts per patient; assessment: self, 33; joint, 8; external, 18). VGA of the HOPE and POS data, including all 1,652 assessed item data, showed consistent trajectory profiles for 14 of 28 items: 10 were increasing (meaning symptom worsening) and comprised predominantly psychosocial issues and care dependency. Type of assessment partly interacted with time, however, not qualitatively so. Analysis of semi-structured interviews revealed delayed interactions with PC/hospice services and numerous neuropsychiatric problems not detected by HOPE and POS.
  
  
  CONCLUSIONS
  Prospective self-assessment of GBM patients' PC issues is feasible. However, disease progression may necessitate further, external assessment. Modification of existing PC assessment tools is needed to detect GBM-specific issues.
authors.affiliation: Department of Palliative Medicine, University Hospital of Cologne, Kerpener-Strasse 62, 50924, Cologne, Germany, heidrun.golla@uk-koeln.de.
authors.forename: Heidrun
authors.initials: H
authors.lastname: Golla
authors.forename: Maryam
authors.initials: M
authors.lastname: Ale Ahmad
authors.forename: Maren
authors.initials: M
authors.lastname: Galushko
authors.forename: Jürgen
authors.initials: J
authors.lastname: Hampl
authors.forename: Mohammad
authors.initials: M
authors.lastname: Maarouf
authors.forename: Michael
authors.initials: M
authors.lastname: Schroeter
authors.forename: Ulrich
authors.initials: U
authors.lastname: Herrlinger
authors.forename: Martin
authors.initials: M
authors.lastname: Hellmich
authors.forename: Raymond
authors.initials: R
authors.lastname: Voltz
mesh_terms: D000368:Aged; D024221:Antineoplastic Protocols; D001526:Behavioral Symptoms / Q000209:etiology; D017281:Cost of Illness; D003710:Demography; D059026:Diagnostic Self Evaluation; D005240:Feasibility Studies; D005260:Female; D005858:Germany / Q000453:epidemiology; D005909:Glioblastoma / Q000175:diagnosis / Q000453:epidemiology / Q000503:physiopathology / Q000523:psychology / Q000628:therapy; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009367:Neoplasm Staging; D063868:Patient Outcome Assessment; D010808:Physical Examination; D011446:Prospective Studies; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology / Q000706:statistics & numerical data