title: End of life care in high-grade glioma patients in three European countries: a comparative study.
abstract: Exploring cross-national differences is useful to evaluate whether different patterns of end of life (EOL) care meet patient's specific needs. This study aimed to (1) compare EOL care processes for high-grade glioma (HGG) patients in three European countries, (2) explore differences in perceived quality of care (QOC), and (3) identify aspects of good QOC in the EOL phase. We analyzed 207 questionnaires from relatives of deceased HGG patients, using a similar retrospective study design in three countries [The Netherlands (n = 83), Austria (n = 72) and the UK (n = 52)], and examined four subthemes: (1) organization of EOL care, (2) treatment preferences, (3) experiences with EOL care, (4) perceived QOC. Three months before death 75 % of patients were at home. In all countries, on average, 50 % were transferred to a hospital at least once and received effective symptom treatment during the last 3 months. In The Netherlands, Austria and UK, respectively, patients most often died at home (60 %), in a hospital (41 %) or hospice (41 %) (p < 0.001). Advance directives were present in 46 % of Dutch, 36 % of British and 6 % of Austrian patients (p < 0.001). Fifty-three percent of patients experienced good QOC, irrespective of country. Dying at the preferred place, satisfaction with information provided and effective symptom treatment were independently associated with good QOC. There are various cross-national differences in organization and experiences with EOL care for HGG, but patient's perceived QOC is similar in the three countries. As symptom treatment was considered effective in only half of HGG patients, and independently predicted good QOC, this particularly needs further improvement in all countries.
authors.affiliation: Department of Neurology, VU University Medical Center, PO Box 7057, 1007 MB, Amsterdam, The Netherlands, j.koekkoek@vumc.nl.
authors.forename: J A F
authors.initials: JA
authors.lastname: Koekkoek
authors.forename: L
authors.initials: L
authors.lastname: Dirven
authors.forename: J C
authors.initials: JC
authors.lastname: Reijneveld
authors.forename: E M
authors.initials: EM
authors.lastname: Sizoo
authors.forename: H R W
authors.initials: HR
authors.lastname: Pasman
authors.forename: T J
authors.initials: TJ
authors.lastname: Postma
authors.forename: L
authors.initials: L
authors.lastname: Deliens
authors.forename: R
authors.initials: R
authors.lastname: Grant
authors.forename: S
authors.initials: S
authors.lastname: McNamara
authors.forename: W
authors.initials: W
authors.lastname: Grisold
authors.forename: E
authors.initials: E
authors.lastname: Medicus
authors.forename: G
authors.initials: G
authors.lastname: Stockhammer
authors.forename: S
authors.initials: S
authors.lastname: Oberndorfer
authors.forename: B
authors.initials: B
authors.lastname: Flechl
authors.forename: C
authors.initials: C
authors.lastname: Marosi
authors.forename: M J B
authors.initials: MJ
authors.lastname: Taphoorn
authors.forename: J J
authors.initials: JJ
authors.lastname: Heimans
mesh_terms: D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D001932:Brain Neoplasms / Q000473:pathology / Q000523:psychology* / Q000628:therapy; D005060:Europe; D005260:Female; D005500:Follow-Up Studies; D005910:Glioma / Q000473:pathology / Q000523:psychology* / Q000628:therapy; D017051:Hospice Care / Q000523:psychology / Q000592:standards; D006801:Humans; D008297:Male; D060787:Neoplasm Grading; D011379:Prognosis; D011787:Quality of Health Care; D011788:Quality of Life; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology / Q000592:standards