title: Distress and psychological morbidity do not reduce over time in carers of patients with high-grade glioma.
abstract: This study aimed to determine how carer distress and psychological morbidity change over time following a patient's diagnosis of high-grade glioma (HGG) and identify factors associated with changes in carers' psychological status.
  
  
  
  Carers of patients with HGG planned for chemoradiotherapy were recruited to this longitudinal cohort study. Carers completed questionnaires during patients' chemoradiotherapy and 3 and 6 months later including the following: the Distress Thermometer (DT); General Health Questionnaire-12 (GHQ-12); and three single-item questions about understanding of information presented by health professionals, confidence to care and preparedness to care for their relative/friend. Linear latent growth models were applied.
  
  
  
  The time 1 questionnaire was completed by 118 carers, of these 70 carers provided responses to the third time point. Carer distress and psychological morbidity were most prominent proximal to diagnosis, but remained high over time. Sixty-two percent of participants had moderate or high distress on the DT at time 1, 61% at time 2 and 58% at time 3. Scores on the DT and the GHQ-12 correlated significantly at all time points as did changes in scores over time (p < .001). However, for individual carers, the DT or GHQ-12 scores at one time point did not strongly predict scores at subsequent time points.
  
  
  
  In carers of patients with HGG, distress levels are consistently high and cannot be predicted at any time point. Carers should be monitored over time to identify evolving psychological morbidity. The single-item DT correlates highly with GHQ-12 scores and is a suitable tool for rapid repeated screening.
authors.affiliation: School of Nursing, Midwifery and Paramedicine, Faculty of Health Sciences, Curtin University, GPO Box U1987, Bentley, Perth, WA, 6845, Australia. g.halkett@curtin.edu.au.
authors.forename: Georgia K B
authors.initials: GK
authors.lastname: Halkett
authors.affiliation: Calvary Health Care Kogarah and Cunningham Centre for Palliative Care, Sydney, NSW, Australia.|School of Medicine, The University of Notre Dame, Sydney, NSW, Australia.
authors.forename: Elizabeth A
authors.initials: EA
authors.lastname: Lobb
authors.affiliation: Telethon Kids Institute, University of Western Australia, Perth, Australia.
authors.forename: Thèrése
authors.initials: T
authors.lastname: Shaw
authors.affiliation: School of Nursing, Midwifery and Paramedicine, Faculty of Health Sciences, Curtin University, GPO Box U1987, Bentley, Perth, WA, 6845, Australia.
authors.forename: Michelle M
authors.initials: MM
authors.lastname: Sinclair
authors.affiliation: Department of Psychiatry, Sir Charles Gairdner Hospital, Perth, WA, Australia.|Department of Health WA, WA Cancer and Palliative Care Network, Perth, WA, Australia.
authors.forename: Lisa
authors.initials: L
authors.lastname: Miller
authors.affiliation: Department of Medical Oncology, Prince of Wales Hospital, Randwick, NSW, Australia.|Department of Medicine, University of New South Wales, Sydney, Australia.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Hovey
authors.affiliation: Department of Medical Oncology, Sir Charles Gairdner Hospital, Nedlands, WA, Australia.|School of Medicine and Pharmacology, University of Western Australia, Nedlands, WA, Australia.
authors.forename: Anna K
authors.initials: AK
authors.lastname: Nowak
mesh_terms: D000328:Adult; D000368:Aged; D001932:Brain Neoplasms / Q000188:drug therapy / Q000473:pathology / Q000523:psychology* / Q000532:radiotherapy; D017028:Caregivers / Q000523:psychology*; D059248:Chemoradiotherapy / Q000523:psychology; D015331:Cohort Studies; D005260:Female; D005910:Glioma / Q000188:drug therapy / Q000473:pathology / Q000523:psychology* / Q000532:radiotherapy; D006801:Humans; D008297:Male; D008875:Middle Aged; D009017:Morbidity; D060787:Neoplasm Grading; D013315:Stress, Psychological / Q000209:etiology / Q000523:psychology*; D011795:Surveys and Questionnaires
keywords: Carers; Distress; High-grade glioma; Longitudinal study; Psychological impact