Skip to main content
SpringerLink
Log in

Improving a newly developed patient-reported outcome for thyroid patients, using cognitive interviewing

  • Published:
Quality of Life Research Aims and scope Submit manuscript

An Erratum to this article was published on 17 July 2008

Abstract

Objective To improve a newly developed patient-reported outcome measure for thyroid patients using cognitive interviewing.

Methods Thirty-one interviews using immediate retrospective and expansive probing were conducted among patients with non-toxic goiter (n = 4), nodular toxic goiter (n = 5) Graves’ disease (n = 6), thyroid eye-disease (n = 6), and primary hypothyroidism (n = 10). The questionnaire was revised successively. Six iterative rounds of interviews were conducted. Identified problems were categorized according to Tourangeau’s four-stage model.

Results Problems were identified 126 times in 43 of the 99 tested items, four of the 15 introductions, and four of the five response categories. Fifty-four problems involved comprehension, one retrieval, 23 judgment, 28 response, and 20 were not applicable to the four-stage model. Among all problems identified, 18 concerned attribution, i.e. whether or not to report only issues considered of thyroid causality. Within each round of interviews, the number of problems declined from an initial average of six per interview to two, mainly due to a reduction in the number of problems associated with comprehension. The least amount of reduction was within the set of problems involving attribution.

Conclusion The cognitive interview methodology was effective in identifying and reducing problems within the questionnaire responding process. Patients tended to selectively report problems they considered to be caused by their thyroid disease even when specifically instructed not to.

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

Similar content being viewed by others

References

  1. Tourangeau, R., Rips, L. J., & Rasinski, K. (2000). The psychology of survey response. Cambridge, UK: Cambridge University Press.

    Google Scholar 

  2. Jobe, J. B. (2003). Cognitive psychology and self-reports: Models and methods. Quality of Life Research, 12(3), 219–227. doi:10.1023/A:1023279029852.

    Article  PubMed  Google Scholar 

  3. Barofski, I. (1996). Cognitive aspects of quality of life assessments. In B. Spilker (Ed.), Quality of life and pharmacoeconomics in clinical trials (2nd ed.). Philadelphia: Lippincott-Raven.

    Google Scholar 

  4. Collins, D. (2003). Pretesting survey instruments: An overview of cognitive methods. Quality of Life Research, 12(3), 229–238. doi:10.1023/A:1023254226592.

    Article  PubMed  Google Scholar 

  5. Sudman, S., Bradburn, N. M., & Schwarz, N. (1996). Thinking about answers. The application of cognitive processes to survey methodology (1st ed.). San Francisco: Jossey-Bass.

    Google Scholar 

  6. Willis, G., Reeve, B. B., & Barofsky, I. (2005). The use of cognitive interviewing techniques in quality of life and patient-reported outcomes assessment. In J. Lipscomb, C. C. Gotay, & C. Snyder (Eds.), Outcomes assessment in cancer: Measures, methods, and applications. Cambridge: Cambridge University Press.

    Google Scholar 

  7. McColl, E., Meadows, K., & Barofsky, I. (2003). Cognitive aspects of survey methodology and quality of life assessment. Quality of Life Research, 12(3), 217–218. doi:10.1023/A:1023233432721.

    Article  PubMed  Google Scholar 

  8. US Food and Drug administration (2006). Guidance for Industry. Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims (Draft). Health and Quality of Life Outcomes, 4(79) (also available at www.fda.gov/CDER/guidance/5460dft.pdf).

  9. Ladenson, P. W. (2002). Psychological wellbeing in patients. Clinical Endocrinology, 57(5), 575–576. doi:10.1046/j.1365-2265.2002.01682.x.

    Article  PubMed  Google Scholar 

  10. Abraham, P., Avenell, A., Watson, W. A., et al. (2004). Antithyroid drug regimen for treating Graves’ hyperthyroidism (Cochrane Review). The Cochrane Library, Issue 3. Chichester, UK: Wiley.

    Google Scholar 

  11. Romijn, J. A., Smit, J. W., & Lamberts, S. W. (2003). Intrinsic imperfections of endocrine replacement therapy. European Journal of Endocrinology, 149(2), 91–97. doi:10.1530/eje.0.1490091.

    Article  PubMed  CAS  Google Scholar 

  12. Gerding, M. N., Terwee, C. B., Dekker, F. W., Koornneef, L., Prummel, M. F., & Wiersinga, W. M. (1997). Quality of life in patients with Graves’ ophthalmopathy is markedly decreased: Measurement by the medical outcomes study instrument. Thyroid, 7(6), 885–889.

    Article  PubMed  CAS  Google Scholar 

  13. Terwee, C., Wakelkamp, I., Tan, S., Dekker, F., Prummel, M. F., & Wiersinga, W. (2002). Long-term effects of Graves’ ophthalmopathy on health-related quality of life. European Journal of Endocrinology, 146(6), 751–757. doi:10.1530/eje.0.1460751.

    Article  PubMed  CAS  Google Scholar 

  14. Bianchi, G. P., Zaccheroni, V., Solaroli, E., Vescini, F., Cerutti, R., Zoli, M., et al. (2004). Health-related quality of life in patients with thyroid disorders. Quality of Life Research, 13(1), 45–54. doi:10.1023/B:QURE.0000015315.35184.66.

    Article  PubMed  CAS  Google Scholar 

  15. Elberling, T. V., Rasmussen, A. K., Feldt-Rasmussen, U., Hording, M., Perrild, H., & Waldemar, G. (2004). Impaired health-related quality of life in Graves’ disease. A prospective study. European Journal of Endocrinology, 151(5), 549–555. doi:10.1530/eje.0.1510549.

    Article  PubMed  CAS  Google Scholar 

  16. Abraham-Nordling, M., Torring, O., Hamberger, B., Lundell, G., Tallstedt, L., Calissendorff, J., et al. (2005). Graves’ disease: A long-term quality-of-life follow up of patients randomized to treatment with antithyroid drugs, radioiodine, or surgery. Thyroid, 15(11), 1279–1286. doi:10.1089/thy.2005.15.1279.

    Article  PubMed  CAS  Google Scholar 

  17. Samuels, M. H., Schuff, K. G., Carlson, N. E., Carello, P., & Janowsky, J. S. (2007). Health status, psychological symptoms, mood, and cognition in L-thyroxine-treated hypothyroid subjects. Thyroid, 17(3), 249–258. doi:10.1089/thy.2006.0252.

    Article  PubMed  CAS  Google Scholar 

  18. Saravanan, P., Chau, W. F., Roberts, N., Vedhara, K., Greenwood, R., & Dayan, C. M. (2002). Psychological well-being in patients on ‘adequate’ doses of l-thyroxine: Results of a large, controlled community-based questionnaire study. Clinical Endocrinology, 57(5), 577–585. doi:10.1046/j.1365-2265.2002.01654.x.

    Article  PubMed  CAS  Google Scholar 

  19. Fahrenfort, J. J., Wilterdink, A. M., & van der Veen, E. A. (2000). Long-term residual complaints and psychosocial sequelae after remission of hyperthyroidism. Psychoneuroendocrinology, 25(2), 201–211. doi:10.1016/S0306-4530(99)00050-5.

    Article  PubMed  CAS  Google Scholar 

  20. Terwee, C. B., Gerding, M. N., Dekker, F. W., Prummel, M. F., & Wiersinga, W. M. (1998). Development of a disease specific quality of life questionnaire for patients with Graves' Ophthalmopathy: The GO-QOL. British Journal of Ophthalmology, 82(7), 773–779.

    CAS  Google Scholar 

  21. Watt, T., Groenvold, M., Rasmussen, A. K., Bonnema, S. J., Hegedüs, L., Bjorner, J. B., et al. (2006). Quality of life in patients with benign thyroid disorders. A review. European Journal of Endocrinology, 154, 501–510. doi:10.1530/eje.1.02124.

    Article  PubMed  CAS  Google Scholar 

  22. Watt, T., Hegedus, L., Rasmussen, A. K., Groenvold, M., Bonnema, S. J., Bjorner, J. B., et al. (2007). Which domains of thyroid-related quality of life are most relevant? Patients and clinicians provide complementary perspectives. Thyroid, 17(7), 647–654. doi:10.1089/thy.2007.0069.

    Article  PubMed  Google Scholar 

  23. Willis, G. (2005). Cognitive interviewing. A tool for improving questionnaire design. London: Sage.

    Google Scholar 

  24. Mullin, P. A., Lohr, K. N., Bresnahan, B. W., & McNulty, P. (2000). Applying cognitive design principles to formatting HRQOL instruments. Quality of Life Research, 9(1), 13–27. doi:10.1023/A:1008923301313.

    Article  PubMed  CAS  Google Scholar 

  25. Presser, S., & Blair, J. (1994). Survey pretesting: Do different methods produce different results? Sociological Methodology American Sociological Association, Washington D.C.

  26. Rothgeb, J., Willis, G., & Forsyth, B. (2001) Questionnaire pretesting methods: Do different techniques and different organizations produce similar results? Proceedings of the Annual Meeting of the American Statistical Association

  27. May, L. A., & Warren, S. (2001). Measuring quality of life of persons with spinal cord injury: Substantive and structural validation. Quality of Life Research, 10, 503–515. doi:10.1023/A:1013027520429.

    Article  PubMed  CAS  Google Scholar 

  28. DeMaio, T., & Rothgeb, J. (1996). Cognitive interviewing techniques: In the lab and in the field. In N. Schwarz, & S. Sudman (Eds.), Answering questions: Methodology for determining cognitive and communicative processes in survey research. San Francisco: Jossey-Bass.

    Google Scholar 

  29. Groenvold, M., Klee, M. C., Sprangers, M. A., & Aaronson, N. K. (1997). Validation of the EORTC QLQ-C30 quality of life questionnaire through combined qualitative and quantitative assessment of patient-observer agreement. Journal of Clinical Epidemiology, 50(4), 441–450. doi:10.1016/S0895-4356(96)00428-3.

    Article  PubMed  CAS  Google Scholar 

  30. Rapkin, B. D., & Schwartz, C. E. (2004). Toward a theoretical model of quality-of-life appraisal: Implications of findings from studies of response shift. Health and Quality of Life Outcomes, 2, 14. doi:10.1186/1477-7525-2-14.

    Article  PubMed  Google Scholar 

  31. Grice, P. (1989). Studies in the way of words. Cambridge: Harvard University Press.

    Google Scholar 

  32. Sprangers, M. A., & Schwartz, C. E. (1999). Integrating response shift into health-related quality of life research: A theoretical model. Social Science & Medicine, 48(11), 1507–1515. doi:10.1016/S0277-9536(99)00045-3.

    Article  CAS  Google Scholar 

Download references

Acknowledgements

This study has been supported by grants from the Danish Medical Research Council, Agnes and Kant Morle's Foundation, Aase and Ejnar Danielsen's Foundation, Else and Mogens Wedell-Wedells Gorg's Foundation, the Genzyme Corporation, the Novo Nordish Foundation and the Danish Thyroid Foundation.

Author information

Authors and Affiliations

  1. Department of Endocrinology, Copenhagen University Hospital Rigshospitalet, Blegdamsvej 9, 2100, Copenhagen Ø, Denmark

    Torquil Watt, Åse Krogh Rasmussen, Sara Hope Watt & Ulla Feldt-Rasmussen

  2. Institute of Public Health, University of Copenhagen, Copenhagen, Denmark

    Torquil Watt & Mogens Groenvold

  3. Department of Palliative Medicine, Bispebjerg Hospital, Copenhagen, Denmark

    Mogens Groenvold

  4. National Research Centre for the Working Environment, Copenhagen, Denmark

    Jakob Bue Bjorner

  5. Department of Endocrinology and Metabolism, Odense University Hospital, Odense, Denmark

    Steen Joop Bonnema & Laszlo Hegedüs

Authors
  1. Torquil Watt
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Åse Krogh Rasmussen
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Mogens Groenvold
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Jakob Bue Bjorner
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Sara Hope Watt
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Steen Joop Bonnema
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Laszlo Hegedüs
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Ulla Feldt-Rasmussen
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Torquil Watt.

Additional information

An erratum to this article can be found at http://dx.doi.org/10.1007/s11136-008-9374-x

Rights and permissions

Reprints and permissions

About this article

Cite this article

Watt, T., Rasmussen, Å.K., Groenvold, M. et al. Improving a newly developed patient-reported outcome for thyroid patients, using cognitive interviewing. Qual Life Res 17, 1009–1017 (2008). https://doi.org/10.1007/s11136-008-9364-z

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-008-9364-z

Keywords

Search

Navigation