title: Diffuse pontine glioma in Jordan and impact of up-front prognosis disclosure with parents and families.
abstract: For patients with diffuse pontine glioma, our institution offers local radiotherapy and supportive care only. The prognosis and do-not-resuscitate orders are discussed upfront with patients' parents. To investigate the effectiveness of this policy, we retrospectively reviewed records of patients with diffuse pontine glioma treated at the institution over a 49-month period. This study included 19 children (16 girls and 3 boys). The median age at diagnosis was 7 years. One patient remained alive at the end of the study, 2 were lost to follow-up, and 16 were confirmed dead. The median survival was 8.2 months. Do-not-resuscitate discussion was documented for 14 patients and successfully initiated for 11. None of those confirmed dead had been offered life support. Contrary to the common belief, our study showed that do not resuscitate should be addressed in Muslim patients with high-risk malignancies. We also found that diffuse pontine glioma warrants further study in developing countries.
authors.affiliation: Department of Paediatrics, King Hussein Cancer Centre, Amman 11941, Jordan.
authors.forename: Ibrahim
authors.initials: I
authors.lastname: Qaddoumi
authors.forename: Najeeb
authors.initials: N
authors.lastname: Ezam
authors.forename: Maisa
authors.initials: M
authors.lastname: Swaidan
authors.forename: Imad
authors.initials: I
authors.lastname: Jaradat
authors.forename: Asem
authors.initials: A
authors.lastname: Mansour
authors.forename: Najyah
authors.initials: N
authors.lastname: Abuirmeileh
authors.forename: Eric
authors.initials: E
authors.lastname: Bouffet
authors.forename: Maysa
authors.initials: M
authors.lastname: Al-Hussaini
mesh_terms: D000293:Adolescent; D000367:Age Factors; D017668:Age of Onset; D018912:Arabs / Q000208:ethnology / Q000523:psychology; D001293:Attitude to Death / Q000208:ethnology; D020295:Brain Stem Neoplasms / Q000175:diagnosis* / Q000401:mortality / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D002423:Cause of Death; D002648:Child; D002675:Child, Preschool; D030881:Disclosure / Q000592:standards / Q000706:statistics & numerical data*; D018450:Disease Progression; D004358:Drug Therapy / Q000706:statistics & numerical data; D005190:Family; D005260:Female; D005910:Glioma / Q000175:diagnosis* / Q000401:mortality / Q000523:psychology*; D006801:Humans; D007597:Jordan / Q000208:ethnology; D008279:Magnetic Resonance Imaging; D008297:Male; D009361:Neoplasm Invasiveness; D010166:Palliative Care / Q000523:psychology / Q000706:statistics & numerical data; D011149:Pons / Q000473:pathology*; D011379:Prognosis; D011788:Quality of Life; D011878:Radiotherapy / Q000706:statistics & numerical data; D016414:Resuscitation Orders; D012189:Retrospective Studies; D015996:Survival Rate; D013727:Terminal Care; D016896:Treatment Outcome