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Supportive Care in Cancer

, Volume 24, Issue 3, pp 1209–1218 | Cite as

Validating self-report and proxy reports of the Dexamethasone Symptom Questionnaire -Chronic for the evaluation of longer-term corticosteroid toxicity

  • Meera AgarEmail author
  • Eng-Siew Koh
  • Emma Gibbs
  • Elizabeth H. Barnes
  • Elizabeth Hovey
  • Ann Livingstone
  • Kate Sawkins
  • Richard Chye
  • Melanie R. Lovell
  • Katherine Clark
  • Janette Vardy
  • Madeleine King
  • On behalf of the Cooperative Trials Group for Neuro-Oncology (COGNO)
Original Article

Abstract

Purpose

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.

Conclusion

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.

Keywords

Cancer Corticosteroids Adverse effects Self-report Questionnaires Caregivers Adverse effects Karnofsky performance status Brain tumour 

Notes

Compliance with ethical standards

All procedures performed in studies involving human participants were in accordance with the 1964 Helsinki declaration and its later amendments. The study was approved by the Cancer Institute NSW and Sydney Local Health District human research ethics committees.

Conflict of interest

The authors declare that they have no conflict of interest.

Funding

The trial is partly funded through program grant 1037786 from the National Health and Medical Research Council (Australia) to the Clinical Trials Centre.

Supplementary material

520_2015_2897_MOESM1_ESM.docx (30 kb)
ESM 1 (DOCX 29 kb)

References

  1. 1.
    Sarin R, Murthy V (2003) Medical decompressive therapy for primary and metastatic intracranial tumours. Lancet Neurol 2(6):357–365CrossRefPubMedGoogle Scholar
  2. 2.
    Kaal ECA, Vecht CJ (2004) The management of brain edema in brain tumors. Curr Opin Oncol 16(6):593–600CrossRefPubMedGoogle Scholar
  3. 3.
    Paulsen O, Klepstad P, Rosland JH, Aass N, Albert E, Fayers P, et al. (2014) Efficacy of methylprednisolone on pain, fatigue, and appetite loss in patients with advanced cancer using opioids: a randomized, placebo-controlled, double-blind trial. J Clin OncolGoogle Scholar
  4. 4.
    Yennurajalingam S, Frisbee-Hume S, Palmer JL, Delgado-Guay MO, Bull J, Phan AT et al (2013) Reduction of cancer-related fatigue with dexamethasone: a double-blind, randomized, placebo-controlled trial in patients with advanced cancer. J Clin Oncol 31(25):3076–3082CrossRefPubMedGoogle Scholar
  5. 5.
    Franco M, William L, Poon P, Azad A (2014) Dexamethasone for cancer-related fatigue. J Clin Oncol 32(6):608–609CrossRefPubMedGoogle Scholar
  6. 6.
    Leppert W, Buss T (2012) The role of corticosteroids in the treatment of pain in cancer patients. Curr Pain Headache Rep 16(4):307–313PubMedCentralCrossRefPubMedGoogle Scholar
  7. 7.
    Miller S, McNutt L, McCann MA, McCorry N (2014) Use of corticosteroids for anorexia in palliative medicine: a systematic review. J Palliat Med 17(4):482–485CrossRefPubMedGoogle Scholar
  8. 8.
    Paulsen O, Aass N, Kaasa S, Dale O (2013) Do corticosteroids provide analgesic effects in cancer patients? A systematic literature review. J Pain Symptom Manag 46(1):96–105CrossRefGoogle Scholar
  9. 9.
    Sturdza A, Millar BA, Bana N, Laperriere N, Pond G, Wong RK et al (2008) The use and toxicity of steroids in the management of patients with brain metastases. Supportive Care in Cancer : Off J Multinational Assoc Supportive Care in Cancer 16(9):1041–1048CrossRefGoogle Scholar
  10. 10.
    Hardy JR, Rees E, Ling J, Burman R, Feuer D, Broadley K et al (2001) A prospective survey of the use of dexamethasone on a palliative care unit. Palliat Med 15(1):3–8CrossRefPubMedGoogle Scholar
  11. 11.
    Ryan R, Booth S, Price S (2012) Corticosteroid-use in primary and secondary brain tumour patients: a review. J Neurooncol 106(3):449–459CrossRefPubMedGoogle Scholar
  12. 12.
    Heimdal K, Hirschberg H, Slettebo H, Watne K, Nome O (1992) High incidence of serious side effects of high-dose dexamethasone treatment in patients with epidural spinal cord compression. J Neurooncol 12(2):141–144CrossRefPubMedGoogle Scholar
  13. 13.
    Vecht CJ, Hovestadt A, Verbiest HB, van Vliet JJ, van Putten WL (1994) Dose-effect relationship of dexamethasone on Karnofsky performance in metastatic brain tumors: a randomized study of doses of 4, 8, and 16 mg per day. Neurology 44(4):675–680CrossRefPubMedGoogle Scholar
  14. 14.
    Gotay C (2009) Patient symptoms and clinician toxicity ratings: both have a role in cancer care. J Natl Cancer Inst 101(23):1602–1603CrossRefPubMedGoogle Scholar
  15. 15.
    Sizoo EM, Dirven L, Reijneveld JC, Postma TJ, Heimans JJ, Deliens L et al (2014) Measuring health-related quality of life in high-grade glioma patients at the end of life using a proxy-reported retrospective questionnaire. J Neurooncol 116(2):283–290CrossRefPubMedGoogle Scholar
  16. 16.
    Sneeuw KC, Sprangers MA, Aaronson NK (2002) The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease. J Clin Epidemiol 55(11):1130–1143CrossRefPubMedGoogle Scholar
  17. 17.
    Vardy J, Chiew KS, Galica J, Pond GR, Tannock IF (2006) Side effects associated with the use of dexamethasone for prophylaxis of delayed emesis after moderately emetogenic chemotherapy. Br J Cancer 94(7):1011–1015PubMedCentralCrossRefPubMedGoogle Scholar
  18. 18.
    National Cancer Institute. Common Terminology Criteria for Adverse Events (CTCAE) v4.0 (2010) Common Terminology Criteria for Adverse Events (CTCAE) and Common Toxicity Criteria (CTC). US National Institutes of HealthGoogle Scholar
  19. 19.
    Jones JM, McPherson CJ, Zimmermann C, Rodin G, Le LW, Cohen SR (2011) Assessing agreement between terminally ill cancer patients’ reports of their quality of life and family caregiver and palliative care physician proxy ratings. J Pain Symptom Manag 42(3):354–365CrossRefGoogle Scholar
  20. 20.
    Schag C, Heinrich R, Ganz P (1984) Karnofsky performance status revisited: Reliability, validity, and guidelines. J Clin Oncol 2:187–193PubMedGoogle Scholar
  21. 21.
    Karnofsky D, Burchenal J (1949) The clinical evaluation of chemotherapeutic agents in cancer. In: MacLeod C (ed) Evaluation of chemotherapeutic agents. Columbia Univ Press, Columbia, p 196Google Scholar
  22. 22.
    Blazeby J, Sprangers M, Cull A, Groenvold M, Bottomley A (2002) Guidelines for developing questionnaire modules. 3rd edition revised ed. EORTC quality of life group, BrusselsGoogle Scholar
  23. 23.
    Landis JR, Koch GG (1977) The measurement of observer agreement for categorical data. Biometrics 33(1):159–174CrossRefPubMedGoogle Scholar
  24. 24.
    Feinstein AR. An additional basic science for clinical medicine: IV. The development of clinimetrics. (0003-4819 (Print))Google Scholar
  25. 25.
    Bland JM, Altman DG (1986) Statistical methods for assessing agreement between two methods of clinical measurement. Lancet 1(8476):307–310CrossRefPubMedGoogle Scholar
  26. 26.
    Osoba D, Rodrigues G, Myles J, Zee B, Pater J (1998) Interpreting the significance of changes in health-related quality-of-life scores. J Clin Oncol 16(1):139–144PubMedGoogle Scholar
  27. 27.
    Revicki D, Hays RD, Cella D, Sloan J (2008) Recommended methods for determining responsiveness and minimally important differences for patient-reported outcomes. J Clin Epidemiol 61(2):102–109CrossRefPubMedGoogle Scholar
  28. 28.
    Doyle M, Bradley NM, Li K, Sinclair E, Lam K, Chan G et al (2007) Quality of life in patients with brain metastases treated with a palliative course of whole-brain radiotherapy. J Palliat Med 10(2):367–374CrossRefPubMedGoogle Scholar
  29. 29.
    Moinpour CM, Lyons B, Schmidt SP, Chansky K, Patchell RA (2000) Substituting proxy ratings for patient ratings in cancer clinical trials: an analysis based on a Southwest Oncology Group trial in patients with brain metastases. Qual Life Res Int J Qual Life Asp Treat Care Rehab 9(2):219–231CrossRefGoogle Scholar
  30. 30.
    Milne DJ, Mulder LL, Beelen HC, Schofield P, Kempen GI, Aranda S (2006) Patients’ self-report and family caregivers’ perception of quality of life in patients with advanced cancer: how do they compare? Eur J Cancer Care 15(2):125–132CrossRefGoogle Scholar
  31. 31.
    Wennman-Larsen A, Tishelman C, Wengstrom Y, Gustavsson P (2007) Factors influencing agreement in symptom ratings by lung cancer patients and their significant others. J Pain Symptom Manag 33(2):146–155CrossRefGoogle Scholar
  32. 32.
    Giesinger JM, Golser M, Erharter A, Kemmler G, Schauer-Maurer G, Stockhammer G et al (2009) Do neurooncological patients and their significant others agree on quality of life ratings? Health Qual Life Outcomes 7:87PubMedCentralCrossRefPubMedGoogle Scholar
  33. 33.
    Steinmann D, Vordermark D, Geinitz H, Aschoff R, Bayerl A, Gerstein J et al (2013) Proxy assessment of patients before and after radiotherapy for brain metastases. Results of a prospective study using the DEGRO brain module. Strahlentherapie Onkol 189(1):47–53CrossRefGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2015

Authors and Affiliations

  • Meera Agar
    • 1
    • 2
    • 4
    • 5
    • 6
    Email author
  • Eng-Siew Koh
    • 1
    • 2
    • 5
    • 6
  • Emma Gibbs
    • 3
  • Elizabeth H. Barnes
    • 3
  • Elizabeth Hovey
    • 2
    • 7
    • 8
  • Ann Livingstone
    • 3
  • Kate Sawkins
    • 3
  • Richard Chye
    • 9
  • Melanie R. Lovell
    • 10
    • 11
  • Katherine Clark
    • 12
    • 13
  • Janette Vardy
    • 10
    • 14
  • Madeleine King
    • 15
  • On behalf of the Cooperative Trials Group for Neuro-Oncology (COGNO)
  1. 1.Discipline of Palliative and Supportive ServicesFlinders UniversityAdelaideAustralia
  2. 2.South West Sydney Clinical SchoolUniversity of New South WalesSydneyAustralia
  3. 3.National Health and Medical Research Council Clinical Trials CentreUniversity of SydneySydneyAustralia
  4. 4.Department of Palliative Care, Braeside HospitalHammondCareSydneyAustralia
  5. 5.Ingham Institute of Applied Medical ResearchSydneyAustralia
  6. 6.Liverpool Cancer Therapy CentreLiverpool HospitalSydneyAustralia
  7. 7.Department of Medical OncologyPrince of Wales HospitalSydneyAustralia
  8. 8.University of New South WalesSydneyAustralia
  9. 9.Sacred Heart Supportive and Palliative CareSt Vincent’s HospitalSydneyAustralia
  10. 10.Sydney Medical SchoolUniversity of SydneySydneyAustralia
  11. 11.Department of Palliative Care, Greenwich HospitalHammondCareSydneyAustralia
  12. 12.Department of Palliative CareCalvary Mater HospitalNewcastleAustralia
  13. 13.School of Medicine and Public HealthUniversity of NewcastleCallaghanAustralia
  14. 14.Concord Cancer CentreConcord HospitalSydneyAustralia
  15. 15.Psycho-oncology Co-operative Research Group (PoCoG), School of PsychologyUniversity of SydneySydneyAustralia

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