title: Screening for symptom burden and supportive needs of patients with glioblastoma and brain metastases and their caregivers in relation to their use of specialized palliative care.
abstract: Patients with brain tumors have a high symptom burden and multiple supportive needs. Needs of caregivers are often unattended. This study aims to determine screening-based symptom burden and supportive needs of patients and caregivers with regard to the use of specialized palliative care (SPC).
  
  
  
  Seventy-nine patients with glioblastoma and brain metastases and 46 caregivers were screened with standardized questionnaires following diagnosis and 2 months later. The screening assessed symptom burden, quality of life (QoL), distress, and supportive needs.
  
  
  
  The most relevant symptoms were drowsiness, tiredness, and low well-being (53-58%). The most prevalent patient supportive needs were the need for information about available resources, the illness, and possible lifestyle changes (50-56%). The most prevalent caregiver needs were information about the illness, lifestyle changes, and about available resources (56-74%). Patients who received SCP and their caregivers had higher symptom burden and supportive needs than those without SPC. They reported moderate improvement in pain, distress, and QoL, while patients without SPC also improved their QoL, but had small to moderate deteriorations in pain, drowsiness, nauseas, well-being, and other problems. Distress of caregivers with SPC improved with moderate to large effect sizes but still was on a high level and remained stable for those without SPC.
  
  
  
  Symptom burden and supportive needs were high, but even more caregivers than patients expressed high distress and supportive needs. SPC appears to reach the target group, both patients and caregivers with elevated symptom burden. Targeted interventions are needed to improve tiredness and drowsiness.
authors.affiliation: Interdisciplinary Center for Palliative Medicine, University Hospital Würzburg, Würzburg, Germany. b.seekatz@uni-wuerzburg.de.|Department of Medical Psychology, Medical Sociology and Rehabilitation Sciences, University of Würzburg, Würzburg, Germany. b.seekatz@uni-wuerzburg.de.
authors.forename: Bettina
authors.identifier: 0000-0001-6288-0566
authors.initials: B
authors.lastname: Seekatz
authors.affiliation: Department of Medical Psychology, Medical Sociology and Rehabilitation Sciences, University of Würzburg, Würzburg, Germany.
authors.forename: Matthias
authors.initials: M
authors.lastname: Lukasczik
authors.affiliation: Department of Neurosurgery, University Hospital Würzburg, Würzburg, Germany.
authors.forename: Mario
authors.initials: M
authors.lastname: Löhr
authors.affiliation: Interdisciplinary Center for Palliative Medicine, University Hospital Würzburg, Würzburg, Germany.|Department of Medical Psychology, Medical Sociology and Rehabilitation Sciences, University of Würzburg, Würzburg, Germany.
authors.forename: Katja
authors.initials: K
authors.lastname: Ehrmann
authors.affiliation: Department of Medical Psychology, Medical Sociology and Rehabilitation Sciences, University of Würzburg, Würzburg, Germany.
authors.forename: Michael
authors.initials: M
authors.lastname: Schuler
authors.affiliation: Department of Neurosurgery, University Hospital Würzburg, Würzburg, Germany.
authors.forename: Almuth F
authors.initials: AF
authors.lastname: Keßler
authors.affiliation: Faculty of Applied Social Sciences, University of Applied Sciences Würzburg-Schweinfurt, Würzburg, Germany.
authors.forename: Silke
authors.initials: S
authors.lastname: Neuderth
authors.affiliation: Department of Neurosurgery, University Hospital Würzburg, Würzburg, Germany.
authors.forename: Ralf-Ingo
authors.initials: RI
authors.lastname: Ernestus
authors.affiliation: Interdisciplinary Center for Palliative Medicine, University Hospital Würzburg, Würzburg, Germany.
authors.forename: Birgitt
authors.initials: B
authors.lastname: van Oorschot
mesh_terms: D000328:Adult; D000368:Aged; D001921:Brain / Q000473:pathology*; D001932:Brain Neoplasms / Q000473:pathology / Q000556:secondary*; D017028:Caregivers / Q000523:psychology*; D005260:Female; D005909:Glioblastoma / Q000473:pathology / Q000628:therapy*; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000379:methods*; D011788:Quality of Life / Q000523:psychology*; D055815:Young Adult
keywords: Brain metastases; Caregivers; Glioblastoma; Palliative care; Supportive care needs; Symptom screening