Skip to main content

Advertisement

SpringerLink
Log in

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

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. Sarin R, Murthy V (2003) Medical decompressive therapy for primary and metastatic intracranial tumours. Lancet Neurol 2(6):357–365

    Article  CAS  PubMed  Google Scholar 

  2. Kaal ECA, Vecht CJ (2004) The management of brain edema in brain tumors. Curr Opin Oncol 16(6):593–600

    Article  CAS  PubMed  Google Scholar 

  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 Oncol

  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):3076–3082

    Article  CAS  PubMed  Google Scholar 

  5. Franco M, William L, Poon P, Azad A (2014) Dexamethasone for cancer-related fatigue. J Clin Oncol 32(6):608–609

    Article  PubMed  Google Scholar 

  6. Leppert W, Buss T (2012) The role of corticosteroids in the treatment of pain in cancer patients. Curr Pain Headache Rep 16(4):307–313

    Article  PubMed Central  PubMed  Google Scholar 

  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):482–485

    Article  PubMed  Google Scholar 

  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):96–105

    Article  Google Scholar 

  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):1041–1048

    Article  Google Scholar 

  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):3–8

    Article  CAS  PubMed  Google Scholar 

  11. Ryan R, Booth S, Price S (2012) Corticosteroid-use in primary and secondary brain tumour patients: a review. J Neurooncol 106(3):449–459

    Article  CAS  PubMed  Google Scholar 

  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):141–144

    Article  CAS  PubMed  Google Scholar 

  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):675–680

    Article  CAS  PubMed  Google Scholar 

  14. Gotay C (2009) Patient symptoms and clinician toxicity ratings: both have a role in cancer care. J Natl Cancer Inst 101(23):1602–1603

    Article  PubMed  Google Scholar 

  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):283–290

    Article  PubMed  Google Scholar 

  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):1130–1143

    Article  PubMed  Google Scholar 

  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):1011–1015

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  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 Health

  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):354–365

    Article  Google Scholar 

  20. Schag C, Heinrich R, Ganz P (1984) Karnofsky performance status revisited: Reliability, validity, and guidelines. J Clin Oncol 2:187–193

    CAS  PubMed  Google Scholar 

  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 196

    Google Scholar 

  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, Brussels

    Google Scholar 

  23. Landis JR, Koch GG (1977) The measurement of observer agreement for categorical data. Biometrics 33(1):159–174

    Article  CAS  PubMed  Google Scholar 

  24. Feinstein AR. An additional basic science for clinical medicine: IV. The development of clinimetrics. (0003-4819 (Print))

  25. Bland JM, Altman DG (1986) Statistical methods for assessing agreement between two methods of clinical measurement. Lancet 1(8476):307–310

    Article  CAS  PubMed  Google Scholar 

  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):139–144

    CAS  PubMed  Google Scholar 

  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):102–109

    Article  PubMed  Google Scholar 

  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):367–374

    Article  PubMed  Google Scholar 

  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):219–231

    Article  CAS  Google Scholar 

  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):125–132

    Article  CAS  Google Scholar 

  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):146–155

    Article  Google Scholar 

  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 7:87

    Article  PubMed Central  PubMed  Google Scholar 

  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):47–53

    Article  CAS  Google Scholar 

Download references

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.

Author information

Authors and Affiliations

  1. Discipline of Palliative and Supportive Services, Flinders University, Adelaide, Australia

    Meera Agar & Eng-Siew Koh

  2. South West Sydney Clinical School, University of New South Wales, Sydney, Australia

    Meera Agar, Eng-Siew Koh & Elizabeth Hovey

  3. National Health and Medical Research Council Clinical Trials Centre, University of Sydney, Sydney, Australia

    Emma Gibbs, Elizabeth H. Barnes, Ann Livingstone & Kate Sawkins

  4. Department of Palliative Care, Braeside Hospital, HammondCare, Sydney, Australia

    Meera Agar

  5. Ingham Institute of Applied Medical Research, Sydney, Australia

    Meera Agar & Eng-Siew Koh

  6. Liverpool Cancer Therapy Centre, Liverpool Hospital, Sydney, Australia

    Meera Agar & Eng-Siew Koh

  7. Department of Medical Oncology, Prince of Wales Hospital, Sydney, Australia

    Elizabeth Hovey

  8. University of New South Wales, Sydney, Australia

    Elizabeth Hovey

  9. Sacred Heart Supportive and Palliative Care, St Vincent’s Hospital, Sydney, Australia

    Richard Chye

  10. Sydney Medical School, University of Sydney, Sydney, Australia

    Melanie R. Lovell & Janette Vardy

  11. Department of Palliative Care, Greenwich Hospital, HammondCare, Sydney, Australia

    Melanie R. Lovell

  12. Department of Palliative Care, Calvary Mater Hospital, Newcastle, Australia

    Katherine Clark

  13. School of Medicine and Public Health, University of Newcastle, Callaghan, Australia

    Katherine Clark

  14. Concord Cancer Centre, Concord Hospital, Sydney, Australia

    Janette Vardy

  15. Psycho-oncology Co-operative Research Group (PoCoG), School of Psychology, University of Sydney, Sydney, Australia

    Madeleine King

Authors
  1. Meera Agar
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Eng-Siew Koh
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Emma Gibbs
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Elizabeth H. Barnes
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Elizabeth Hovey
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Ann Livingstone
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Kate Sawkins
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Richard Chye
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Melanie R. Lovell
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Katherine Clark
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Janette Vardy
    View author publications

    You can also search for this author in PubMed Google Scholar

  12. Madeleine King
    View author publications

    You can also search for this author in PubMed Google Scholar

Consortia

On behalf of the Cooperative Trials Group for Neuro-Oncology (COGNO)

Corresponding author

Correspondence to Meera Agar.

Additional information

Trial registration: ACTRN12611000378921

Electronic supplementary material

Below is the link to the electronic supplementary material.

ESM 1

(DOCX 29 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Agar, M., Koh, ES., Gibbs, E. et al. Validating self-report and proxy reports of the Dexamethasone Symptom Questionnaire -Chronic for the evaluation of longer-term corticosteroid toxicity. Support Care Cancer 24, 1209–1218 (2016). https://doi.org/10.1007/s00520-015-2897-0

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-015-2897-0

Keywords

Search

Navigation