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Information Design Journal: Online-First Articles

Developing a new urology questionnaire from the patient’s perspective

ORCID logo | University Medical Center Groningen
ORCID logo | Rijnstate Hospital
ORCID logo | University Medical Center Groningen
ORCID logo | University Medical Center Groningen
ORCID logo | University of Groningen | Stellenbosch University
In this qualitative study a new urology questionnaire to assess Lower Urinary Tract Symptoms (LUTS) in men was incrementally developed. The patient’s perspective was always paramount. Thirty-seven male participants aged 40 and over with different levels of health literacy completed several versions of the new questionnaire. Participants were asked to think aloud while completing the task. Participants’ utterances and comments in a follow-up interview were used to create improved versions of the questionnaire. The final version was the Dutch Reduced Illustrated Prostate Symptom Score (DRIPSS), a questionnaire consisting of pictorial scales. Participants’ feedback suggests that the DRIPSS will largely eliminate patients’ completion problems.
Keywords: Lower Urinary Tract Symptoms (LUTS), Dutch Reduced Illustrated Prostate Symptom Score (DRIPSS), pictorial scale, patient’s perspective, questionnaire, working-aloud method, health literacy
Article outline
  • 1.Introduction
  • 2.Method
    • 2.1Study design
    • 2.2Materials
    • 2.3Participants and setting
    • 2.4The working-aloud method
    • 2.5Procedure
    • 2.6Data analysis
    • 2.7Characteristics of the investigators
  • 3.Results
    • 3.1First round
    • 3.2Second round
    • 3.3Third round
    • 3.4Fourth round
  • 4.Discussion
    • 4.1Strengths and limitations
    • 4.2Implications for research
  • 5.Conclusion
  • Acknowledgements
  • References
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References (38)
References
American Urological Association (2023). Management of lower urinary tract symptoms attributed to benign prostatic hyperplasia: AUA guideline. Accessed 18 March 2024). Available at: [URL]
Arcia, A., Pho, A. T., Lor, M., & Bakken, S. (2023). Comparison of newest vital sign and brief health literacy screen scores in a large, urban Hispanic cohort . Patient Education and Counseling, 109 1: 107628. DOI logoGoogle Scholar
Cam, K., Senel, F., Akman, Y., & Erol, A. (2003). The efficacy of an abbreviated model of the International Prostate Symptom Score in evaluating benign prostatic hyperplasia . BJU International, 91 (3), 186–189. DOI logoGoogle Scholar
Ceylan, Y., Gunlucoy, B., Degirmency, T., Kozacioglu, Z., Bolat, D., & Minareci, S. (2015). Is new visual prostate symptom score useful as International Prostate Symptom Score in the evaluation of men with lower urinary tract symptoms? A prospective comparison of 2 symptom scores in Turkish society . Urology, 85 (3), 653–657. DOI logoGoogle Scholar
Chawla, A., & Gali, K. V. (2024). Using pictures instead of words: visual-validated questionnaires for LUTS and neurogenic bladder . Current Bladder Dysfunction Reports, 19 (1), 27–36. DOI logoGoogle Scholar
Chew, L. D., Bradley, K. A., & Boyko, E. J. (2004). Brief questions to identify patients with inadequate health literacy . Family medicine, 36 (8), 588–594.Google Scholar
Chew, L. D., Griffin, J. M., Partin, M. R., Noorbaloochi, S., Grill, J. P., Snyder, A., Bradley, K. A., Nugent, S. M., Baines, A. D., & VanRyn, M. (2008). Validation of Screening Questions for Limited Health Literacy in a Large VA Outpatient Population . Journal of General Internal Medicine, 23 (5), 561–566. DOI logoGoogle Scholar
Cooke, L. (2010). Assessing concurrent think-aloud protocol as a usability test method: a technical communication approach . IEEE transactions on professional communication, 53 (3), 202–215. DOI logoGoogle Scholar
Descazeaud, A., Coloby, P., Davin, J. L., De la Taille, E. A., Karseny, G., Kouri, G., Rossi, D., Pouteau, J. C., & Zerbib, M. (2017). Validation of Visual Prostate Symptom Score, VPSS, in the evaluation of lower urinary tract symptoms associated with benign prostatic hyperplasia (550 patients) . Progres en urologie, 27 (3), 176–183. DOI logoGoogle Scholar
European Association of Urology (2023). Guideline management of non-neurogenic male LUTS. Accessed 18 March 2024) Available at: [URL]
Fan, M., Shi, S., & Truong, K. N. (2020). Practices and challenges of using think-aloud protocols in industry: an international survey . Journal of User Experience, 15 (2), 85–102. URL: [URL]
Fransen, M. P., Van Schaik, T. M., Twickler, T. B., & Essink-Bot, M. L. (2011). Applicability of internationally available health literacy measures in the Netherlands . Journal of health communication 16 (3), 134–149. DOI logoGoogle Scholar
Frohlich, D. M. (1986). On the organization of form-filling behaviour . Information Design Journal, 5 (1), 43–59. DOI logoGoogle Scholar
(1987). On the re-organisation of form-filling behaviour in an electronic medium . Information Design Journal, 5 (2), 111–128. DOI logoGoogle Scholar
HLS-EU Consortium (2012). Comparative report of health literacy in eight EU member states . The European Health Literacy Survey HLS-EU (second revised and extended version, date July 22th, 2014).Google Scholar
Jansen, C. J. M. (2023). Using a U-turn construction in information design (Editorial) . Information Design Journal, 28 (3), 1–5. DOI logoGoogle Scholar
Jansen, C. J. M., & Steehouder, M. (1989). Taalverkeersproblemen tussen overheid en burger. [PhD Thesis, SDU, Den Haag, The Netherlands].
(1992). Forms as a source of communication problems . Journal of Technical Writing and Communication, 22 (2), 179–194. DOI logoGoogle Scholar
Johnson, T. V., Goodman, M., & Master, V. A. (2007). The efficacy of written screening tools in an inner city hospital: literacy based limitations on patient access to appropriate care . The Journal of urology, 178 (2), 623–629. DOI logoGoogle Scholar
Johnson, T. V., Abbasi, A., Ehrlich, S. S., Kleris, R. S., Schoenberg, E. D., Owen-Smith, A., Goodman, M., & Master, V. A. (2008). Patient misunderstanding of the individual questions of the American Urological Association symptom score . The Journal of urology, 179 (6), 2291–2294. DOI logoGoogle Scholar
Koops van ’t Jagt, R., De Winter, A. F., Reijneveld, S. A., Hoeks, J. C. J., & Jansen, C. J. M. (2016). Development of a communication intervention for older adults with limited health literacy: photo stories to support doctor–patient communication . Journal of Health Communication 21 (2), 69–82. DOI logoGoogle Scholar
Kutner, M., Greenberg, E., Jin, Y., & Paulsen, C. (2006). The health literacy of America’s adults: results from the 2003 national assessment of adult literacy. U.S. Department of Education. Washington, DC. National Center for Education Statistics 2006–483. URL: [URL]
Lonsdale, M. D. S. (2022). Information visualisation: from theory, to research, to practice… and back. Sage Publications Limited.Google Scholar
MacDiarmid, S. A., Goodson, T. C., Holmes, T. M., Martin, P. R., & Doyle, R. B. (1998). An assessment of the comprehension of the American Urological Association Symptom Index . The Journal of urology, 159 (3), 873–874. DOI logoGoogle Scholar
Mantwill, S., Allam, A., Camerini, A. L., & Schulz, P. J. (2018). Validity of three brief health literacy screeners to measure functional health literacy — evidence from five different countries . Journal of Health Communication, 23 (2), 153–161. DOI logoGoogle Scholar
Netto Júnior, N. R., & De Lima, M. L. (1995). The influence of patient education level on the International Prostatic Symptom Score . The Journal of urology, 154 (1), 97–99. DOI logoGoogle Scholar
Nutbeam, D., & Bauman, A. (2006). Evaluation in a nutshell: a practical guide to the evaluation of health promotion programs. Sydney: McGraw-Hill.Google Scholar
Pianosi, P., Smith, C. P., Almudevar, A., & McGrath, P. J. (2006). Dalhousie dyspnea scales: Pictorial scales to measure dyspnea during induced bronchoconstriction . Pediatric Pulmonology 41 (12), 1182–1187. DOI logoGoogle Scholar
Roter, D. L., Rudd, R. E., Frantz, S. C., & Comings, J. P. (1981). Community-produced materials for health education . Public Health Reports, 96 ( 2 ), 169–172.Google Scholar
Roy, A., Singh, A., Sidhu, D. S., Jindal, R. P., Malhotra, M., & Kaur, H. (2016). New visual prostate symptom score versus International Prostate Symptom Score in men with lower urinary tract symptoms: a prospective comparision in Indian rural population . Nigerian journal of surgery, 22 (2), 111–117. DOI logoGoogle Scholar
Sauer, J., Baumgartner, J., Frei, N., & Sonderegger, A. (2021). Pictorial scales in research and practice. A review . European Psychologist, 26 (2), 112–130. DOI logoGoogle Scholar
Schlatmann, F. W. M., Van Balken, M. R., De Winter, A. F., De Jong, I.-J., & Jansen, C. J. M. (2022). How do patients understand questions about lower urinary tract symptoms? A qualitative study of problems in completing urological questionnaires . International Journal of Environmental Research and Public Health, 19 (15), 9650. DOI logoGoogle Scholar
Stagliano, V., & Wallace, L. S. (2013). Brief health literacy screening items predict newest vital sign scores . Journal of the American Board of Family Medicine, 26 (5), 558–565. DOI logoGoogle Scholar
Taneja, Y., Ram, P., Kumar, S., Raj, K., Singh, C. K., Dhaked, S. K., & Jaipuria, J. (2017). Comparison of visual prostate symptom score and International Prostate Symptom Score in the evaluation of men with benign prostatic hyperplasia: a prospective study from an Indian population . Prostate international, 5 (4): 158–161. DOI logoGoogle Scholar
Van den Haak, M. J., De Jong, M. D. T., & Schellens, P. J. (2009). Evaluating municipal websites: a methodological comparison of three think-aloud variants . Government Information Quarterly, 26 (1), 193–220. DOI logoGoogle Scholar
Van der Walt, C. L., Groeneveld, A. E., Heyns, C. F., Edlin, R. S., & Van Vuuren, S. P. J. (2011). Prospective comparison of a new Visual Prostate Symptom Score versus the International Prostate Symptom Score in men with lower urinary tract symptoms . Urology 78 1: 17–20. DOI logoGoogle Scholar
Van Someren, M. W., Barnard, Y. F., & Sandberg, J. A. C. (1994). The Think Aloud Method. A practical guide to modelling cognitive processes . 1st ed.; London, UK: Academic PressGoogle Scholar
Wallace, L. S., Cassada, D. C., Rogers, E. S., Freeman, M. B., Grandas, O. H., Stevens, S. L., & Goldman, M. H. (2007). Can screening items identify surgery patients at risk of limited health literacy? Journal of Surgical Research, 140 (2), 208 – 213. DOI logoGoogle Scholar