title: Predicting distress among people who care for patients living longer with high-grade malignant glioma.
abstract: OBJECTIVE
  Caregivers of patients living longer with high-grade malignant glioma (HGG) have the unique challenge of caring for a person who may have cognitive impairment, along with cancer-related issues over a prolonged period of time. This study aims to detail the psychosocial profile of long-term caregivers, to describe their perceptions of the patient's quality of life and to examine predictors of their psychological distress.
  
  
  METHODS
  Sixty-nine caregivers (48%) of eligible patients with HGG surviving over 2 years were recruited from two Australian metropolitan tertiary hospitals. Caregivers completed cross-sectional measures of psychological distress (GHQ-12), caregiver impact (FACQ-PC) and patient functional well-being (FACT-Br TOI). Correlational analyses identified factors related to caregiver psychological distress. Those of significance (p ≤ .01) were examined using multiple regression models to determine their predictive value.
  
  
  RESULTS
  Caregivers were mostly female (73%), spouses (67%), cohabiting (78%) and were caring for patients surviving a median of 5.9 years since diagnosis. Whilst caregivers overall reported minimal psychological distress, 28% endorsed moderate to severe psychological distress, warranting clinical attention. Caregiver strain and low patient functional well-being both significantly predicted caregiver psychological distress (adjusted R(2) = .35, F(4, 60) = 17.7, p < .001), accounting for a moderate amount (35%) of variance. Other typical factors such as duration of caregiving, performance status, symptom burden and disease or demographic related factors were not predictive.
  
  
  CONCLUSIONS
  Psychological distress affects a significant proportion of caregivers of patients living longer with HGG. The presence of caregiver strain and low patient functional well-being are the most important predictors of psychological distress among this cohort of caregivers.
authors.affiliation: Centre for Palliative Care, St Vincent's Hospital Melbourne, 6 Gertrude Street, Fitzroy, Victoria, 3065, Australia. beth.russell@svha.org.au.
authors.forename: B
authors.initials: B
authors.lastname: Russell
authors.affiliation: Centre for Palliative Care, St Vincent's Hospital Melbourne, 6 Gertrude Street, Fitzroy, Victoria, 3065, Australia.
authors.forename: A
authors.initials: A
authors.lastname: Collins
authors.affiliation: Department of Medical Oncology, St Vincent's Hospital Melbourne, 41 Victoria Parade, Fitzroy, Victoria, 3065, Australia.
authors.forename: A
authors.initials: A
authors.lastname: Dowling
authors.affiliation: William Buckland Radiation Oncology Service, The Alfred Hospital, 55 Commercial Road, Melbourne, Victoria, 3004, Australia.
authors.forename: M
authors.initials: M
authors.lastname: Dally
authors.affiliation: Department of Palliative Care, The Alfred Hospital, 55 Commercial Road, Melbourne, Victoria, 3004, Australia.
authors.forename: M
authors.initials: M
authors.lastname: Gold
authors.affiliation: Department of Neurosurgery, St Vincent's Hospital Melbourne, 41 Victoria Parade, Fitzroy, Victoria, 3065, Australia.
authors.forename: M
authors.initials: M
authors.lastname: Murphy
authors.affiliation: Department of Medicine, St Vincent's Hospital Melbourne, University of Melbourne, 41 Victoria Parade, Fitzroy, Victoria, 3065, Australia.
authors.forename: J
authors.initials: J
authors.lastname: Burchell
authors.affiliation: Centre for Palliative Care, St Vincent's Hospital Melbourne, 6 Gertrude Street, Fitzroy, Victoria, 3065, Australia.
authors.forename: J
authors.initials: J
authors.lastname: Philip
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001315:Australia; D017028:Caregivers / Q000523:psychology*; D003072:Cognition Disorders / Q000523:psychology; D003430:Cross-Sectional Studies; D005260:Female; D005910:Glioma; D006801:Humans; D008297:Male; D008875:Middle Aged; D011594:Psychometrics / Q000706:statistics & numerical data*; D011788:Quality of Life / Q000523:psychology*; D013315:Stress, Psychological / Q000523:psychology*; D055815:Young Adult
keywords: Caregiver; Distress; Glioblastoma; Glioma; Quality of life; Survivor