title: Validating self-report and proxy reports of the Dexamethasone Symptom Questionnaire -Chronic for the evaluation of longer-term corticosteroid toxicity.
abstract: OBJECTIVE
  In brain tumours, brain metastases or advanced cancer; treatment with corticosteroids, side effects can add to symptoms. These are best assessed by patients, complementing clinical assessment. We assessed the feasibility and validity of the Dexamethasone Symptom Questionnaire-Chronic (DSQ-Chronic), patient and caregiver versions.
  
  
  METHODS
  A longitudinal cohort study was conducted, collecting clinician-rated toxicity, performance status, dexamethasone dose and DSQ-Chronic (patient and caregiver versions) at baseline, then 2, 4 and 8 weeks later. Patients had a primary malignant brain tumour, brain metastases, or advanced cancer; Karnofsky Performance Status ≥40 and predicted survival ≥8 weeks. Analysis included questionnaire completion rates, frequency and severity of dexamethasone-attributable side effects, agreement between patient and caregiver ratings, comparison with clinician-rated toxicity and correlation with performance status.
  
  
  RESULTS
  Sixty-six patients were recruited (mean age 60 years), with their caregivers. Completion of questionnaires was over 90% for the dyad at baseline but dropped over time, with caregiver completion rates higher at all timepoints. Agreement between patients and proxies was fair to moderate, and while proxies systematically overestimated symptom severity on DSQ-chronic total scores, the bias was less than 10 points. Patient and clinician agreement was higher for more objective symptoms.
  
  
  CONCLUSIONS
  The DSQ-Chronic is feasible when the patient is relatively well. As capacity to complete the DSQ-Chronic diminishes, caregivers can be proxy-raters. Clinicians capture corticosteroid toxicities, which may not be obvious to the patient. The DSQ-Chronic, patient and caregiver versions, are useful tools to be used with clinician assessment.
authors: Discipline of Palliative and Supportive Services, Flinders University, Adelaide, Australia. meera.agar@sswahs.nsw.gov.au.|South West Sydney Clinical School, University of New South Wales, Sydney, Australia. meera.agar@sswahs.nsw.gov.au.|Department of Palliative Care, Braeside Hospital, HammondCare, Sydney, Australia. meera.agar@sswahs.nsw.gov.au.|Ingham Institute of Applied Medical Research, Sydney, Australia. meera.agar@sswahs.nsw.gov.au.|Liverpool Cancer Therapy Centre, Liverpool Hospital, Sydney, Australia. meera.agar@sswahs.nsw.gov.au.
authors: Meera
authors: M
authors: Agar
authors: Discipline of Palliative and Supportive Services, Flinders University, Adelaide, Australia.|South West Sydney Clinical School, University of New South Wales, Sydney, Australia.|Ingham Institute of Applied Medical Research, Sydney, Australia.|Liverpool Cancer Therapy Centre, Liverpool Hospital, Sydney, Australia.
authors: Eng-Siew
authors: ES
authors: Koh
authors: National Health and Medical Research Council Clinical Trials Centre, University of Sydney, Sydney, Australia.
authors: Emma
authors: E
authors: Gibbs
authors: National Health and Medical Research Council Clinical Trials Centre, University of Sydney, Sydney, Australia.
authors: Elizabeth H
authors: EH
authors: Barnes
authors: South West Sydney Clinical School, University of New South Wales, Sydney, Australia.|Department of Medical Oncology, Prince of Wales Hospital, Sydney, Australia.|University of New South Wales, Sydney, Australia.
authors: Elizabeth
authors: E
authors: Hovey
authors: National Health and Medical Research Council Clinical Trials Centre, University of Sydney, Sydney, Australia.
authors: Ann
authors: A
authors: Livingstone
authors: National Health and Medical Research Council Clinical Trials Centre, University of Sydney, Sydney, Australia.
authors: Kate
authors: K
authors: Sawkins
authors: Sacred Heart Supportive and Palliative Care, St Vincent's Hospital, Sydney, Australia.
authors: Richard
authors: R
authors: Chye
authors: Sydney Medical School, University of Sydney, Sydney, Australia.|Department of Palliative Care, Greenwich Hospital, HammondCare, Sydney, Australia.
authors: Melanie R
authors: MR
authors: Lovell
authors: Department of Palliative Care, Calvary Mater Hospital, Newcastle, Australia.|School of Medicine and Public Health, University of Newcastle, Callaghan, Australia.
authors: Katherine
authors: K
authors: Clark
authors: Sydney Medical School, University of Sydney, Sydney, Australia.|Concord Cancer Centre, Concord Hospital, Sydney, Australia.
authors: Janette
authors: J
authors: Vardy
authors: Psycho-oncology Co-operative Research Group (PoCoG), School of Psychology, University of Sydney, Sydney, Australia.
authors: Madeleine
authors: M
authors: King
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015982:Bias; D001932:Brain Neoplasms / Q000188:drug therapy; D017028:Caregivers; D015331:Cohort Studies; D003907:Dexamethasone / Q000009:adverse effects* / Q000627:therapeutic use; D005260:Female; D005910:Glioma / Q000188:drug therapy; D005938:Glucocorticoids / Q000009:adverse effects* / Q000627:therapeutic use; D006801:Humans; D019586:Intracranial Hypertension / Q000188:drug therapy; D017567:Karnofsky Performance Status; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D019727:Proxy; D057566:Self Report; D011795:Surveys and Questionnaires; D016896:Treatment Outcome
chemical_list: D005938:Glucocorticoids; D003907:Dexamethasone
keywords: Adverse effects; Brain tumour; Cancer; Caregivers; Corticosteroids; Karnofsky performance status; Questionnaires; Self-report