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Asking the right questions: investigating needs assessments and health-related quality-of-life questionnaires for use in oncology clinical practice

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Abstract

Goals of work

Questionnaires used in oncology practice for individual patient management need to address issues patients find important and want help with and issues cancer center health professionals can address. We investigated the item content from two health-related quality-of-life (HRQOL) questionnaires and two needs assessments for this purpose.

Patients and methods

In this preliminary study, 61 cancer patients and 19 cancer center health professionals rated the item content from the EORTC-QLQ-C30, FACT-G, Supportive Care Needs Survey-34 (SCNS), and Kingston Needs Assessment–Cancer. Patients rated each item’s importance and whether they wanted help with it; health professionals rated each item’s importance and whether they felt able to help patients address it. Patients and health professionals also reported their overall questionnaire preference.

Main results

Patients rated information about treatments (options, benefits, side effects) and care coordination as the most important issues and those for which they most wanted help from their health professionals. Health professionals rated pain and other symptom/side effect items as most important to patients and those for which they were most able to help. Findings were consistent across tumor type and treatment status. Patients had an overall preference for the SCNS. Health professionals had no clear questionnaire preference.

Conclusions

This preliminary study suggests that the issues patients most want help with may not be the issues that health professionals feel most able to address. If these findings are confirmed in more representative samples, interventions may be needed to assist health professionals in managing cancer patients’ HRQOL issues and needs.

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References

  1. Aaronson NK, Cull AM, Kaasa S, Sprangers MAG (1996) The European Organization for Research and Treatment of Cancer (EORTC) modular approach to quality of life assessment in oncology: an update. In: Spilker B (ed) Quality of life and pharmacoeconomics in clinical trials, 2nd (edn). Lippincott-Raven, Philadelphia, pp 179–189

    Google Scholar 

  2. Bonevski B, Sanson-Fisher RW, Girgis A, Burton L, Cook P, Boyes A, Supportive Care Review Group (2000) Evaluation of an instrument to assess the needs of patients with cancer. Cancer 88:217–225

    Article  PubMed  CAS  Google Scholar 

  3. Buxton J, White M, Osoba D (1998) Patients’ experiences using a computerized program with a touch-sensitive video monitor for the assessment of health related quality of life. Qual Life Res 7:513–519

    Article  PubMed  CAS  Google Scholar 

  4. Calkins DR, Rubenstein LV, Cleary PD, Davies AR, Jette AM, Fink A, Kosecoff J, Young RT, Brook RH, Delbanco TL (1994) Functional disability screening of ambulatory patients: a randomized controlled trial in a hospital-based practice group. J Gen Intern Med 9:590–592

    Article  PubMed  CAS  Google Scholar 

  5. Carlson LE, Speca M, Hagen N, Taenzer P (2001) Computerized quality-of-life screening in a cancer pain clinic. J Palliat Care 17:46–52

    PubMed  CAS  Google Scholar 

  6. Cella DF, Bonomi AE (1996) The Functional Assessment of Cancer Therapy (FACT) and Functional Assessment of HIV Infection (FAHI) Quality of life measurement system. In: Spilker B (ed) Quality of life and pharmacoeconomics in clinical trials, 2nd (edn). Lippincott-Raven, Philadelphia, pp 203–214

    Google Scholar 

  7. Davidson JR, Findlay L, Zetes-Zanatta L, Ram SS, Brundage MD, Smith A (2003) Assessing the supportive care needs of patients who attend a cancer centre: development and feasibility of a questionnaire. Qual Life Res 2:814

    Google Scholar 

  8. Detmar SB, Aaronson NK (1998) Quality of life assessment in daily clinical oncology practice: a feasibility study. Eur J Cancer 34:1181–1186

    Article  PubMed  CAS  Google Scholar 

  9. Detmar SB, Muller MJ, Schornagel JH, Wever LDV, Aaronson NK (2002) Role of health-related quality of life in palliative chemotherapy treatment decisions. J Clin Oncol 20:1056–1062

    Article  PubMed  CAS  Google Scholar 

  10. Detmar SB, Muller MJ, Schornagel JH, Wever LDV, Aaronson NK (2002) Health-related quality-of-life assessments and patient–physician communications. A randomized clinical trial. JAMA 288:3027–3034

    Article  PubMed  Google Scholar 

  11. Gill TM, Feinstein AR (1994) A critical appraisal of the quality of quality-of-life measurements. JAMA 272:619–626

    Article  PubMed  CAS  Google Scholar 

  12. Greenhalgh J, Meadows K (1999) The effectiveness of the use of patient-based measures of health in routine practice in improving the process and outcomes of patient care: a literature review. J Eval Clin Pract 5:401–416

    Article  PubMed  CAS  Google Scholar 

  13. Gustafson D (2005) Needs assessment in cancer. In: Lipsomb J, Gotay CC, Snyder C (eds) Outcomes assessment in cancer: measures, methods, and applications. Cambridge University Press, Cambridge, pp 305–328

    Google Scholar 

  14. Haywood K, Marshall S, Fitzpatrick R (2006) Patient participation in the consultation process: a structured review of intervention strategies. Patient Educ Couns 63:12–23

    Article  PubMed  Google Scholar 

  15. Jacobsen PB, Davis K, Cella D (2002) Assessing quality of life in research and clinical practice. Oncology 16:133–139

    PubMed  Google Scholar 

  16. Larsson G, Widmark-Petersson V, Lampic C, von Essen L, Sjoden P-O (1998) Cancer patient and staff ratings of the importance of caring behaviours and their relations to patient anxiety and depression. J Adv Nurs 27:855–864

    Article  PubMed  CAS  Google Scholar 

  17. Leplege A, Hunt S (1997) The problem of quality of life in medicine. JAMA 278:47–50

    Article  PubMed  CAS  Google Scholar 

  18. McHorney CA, Tarlov AR (1995) Individual-patient monitoring in clinical practice: are available health status surveys adequate? Qual Life Res 4:293–307

    Article  PubMed  CAS  Google Scholar 

  19. McLachlan S-A, Allenby A, Matthews J, Wirth A, Kissane D, Bishop M, Beresford J, Zalcberg J (2001) Randomized trial of coordinated psychosocial interventions based on patient self-assessment versus standard care to improve the psychosocial functioning of patients with cancer. J Clin Oncol 19:4117–4125

    PubMed  CAS  Google Scholar 

  20. Morris J, Perez D, McNoe B (1998) The use of quality of life data in clinical practice. Qual Life Res 7:85–91

    Article  PubMed  CAS  Google Scholar 

  21. Rothwell PM, McDowell Z, Wong CK, Dorman PJ (1997) Doctors and patients don’t agree: cross sectional study of patients’ and doctors’ perceptions and assessments of disability in multiple sclerosis. BMJ 314:1580–1583

    PubMed  CAS  Google Scholar 

  22. Rubenstein LV, McCoy JM, Cope DW, Barrett PA, Hirsch SH, Messer KS, Young RT (1995) Improving patient quality of life with feedback to physicians about functional status. J Gen Intern Med 10:607–614

    Article  PubMed  CAS  Google Scholar 

  23. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P, Supportive Care Review Group (2000) The unmet supportive care needs of patients with cancer. Cancer 88:226–237

    Article  PubMed  CAS  Google Scholar 

  24. Skeel RT (1993) Quality of life dimensions that are most important to cancer patients. Oncology 7:55–60

    PubMed  CAS  Google Scholar 

  25. Taenzer P, Bultz BD, Carlson LE, Speca M, DeGagne T, Olson K, Doll R, Rosberger Z (2000) Impact of computerized quality of life screening on physician behaviour and patient satisfaction in lung cancer outpatients. Psycho-Oncology 9:203–213

    Article  PubMed  CAS  Google Scholar 

  26. Velikova G, Wright EP, Smith AB, Cull A, Gould A, Forman D, Perren T, Stead M, Brown J, Selby PJ (1999) Automated collection of quality-of-life data: a comparison of paper and computer touch-screen questionnaires. J Clin Oncol 17:998–1007

    PubMed  CAS  Google Scholar 

  27. Velikova G, Wright P, Smith AB, Stark D, Perren T, Brown J, Selby P (2001) Self-reported quality of life of individual cancer patients: concordance of results with disease course and medical records. J Clin Oncol 19:2064–2073

    PubMed  CAS  Google Scholar 

  28. Velikova G, Brown JM, Smith AB, Selby PJ (2002) Computer-based quality of life questionnaires may contribute to doctor–patient interactions in oncology. Br J Cancer 86:51–59

    Article  PubMed  CAS  Google Scholar 

  29. Velikova G, Booth L, Smith AB, Brown PM, Lynch P, Brown JM, Selby PJ (2004) Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Oncol 22:714–724

    Article  PubMed  Google Scholar 

  30. Widmark-Petersson V, von Essen L, Sjoden P-O (2000) Perceptions of caring among patients with cancer and their staff: differences and disagreements. Cancer Nurs 23:32–39

    Article  PubMed  CAS  Google Scholar 

  31. Wright EP, Selby PJ, Crawford M, Gillibrand A, Johnston C, Perren TJ, Rush R, Smith A, Velikova G, Watson K, Gould A, Cull A (2003) Feasibility and compliance of automated measurement of quality of life in oncology practice. J Clin Oncol 21:374–382

    Article  PubMed  CAS  Google Scholar 

  32. Yount S, Davis K, Khan S, Bass M, Eton D, Masters G, Cella D (2003) Real-time symptom monitoring of patients with advanced lung cancer. Qual Life Res 12:725

    Google Scholar 

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Acknowledgments

This study was funded by grant 1K07CA96783 from the US National Cancer Institute (Dr. Dy).

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Correspondence to Claire F. Snyder.

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Snyder, C.F., Dy, S.M., Hendricks, D.E. et al. Asking the right questions: investigating needs assessments and health-related quality-of-life questionnaires for use in oncology clinical practice. Support Care Cancer 15, 1075–1085 (2007). https://doi.org/10.1007/s00520-007-0223-1

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  • DOI: https://doi.org/10.1007/s00520-007-0223-1

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