How Do Patients Understand Questions about Lower Urinary Tract Symptoms? A Qualitative Study of Problems in Completing Urological Questionnaires

Abstract

Lower urinary tract symptoms are common complaints in ageing people. For a urological evaluation of such complaints in men, the International Prostate Symptom Score (IPSS) is used worldwide. Previous quantitative studies have revealed serious problems in completing this questionnaire. In order to gain insight into the nature and causes of these problems, we conducted a qualitative study. Not only the purely verbal IPSS was studied but also two alternatives, including pictograms: the Visual Prostate Symptom Score (VPSS) and the Score Visuel Prostatique en Image (SVPI). Men aged 40 years and over with an inadequate level of health literacy (IHL; n = 18) or an adequate level of health literacy (AHL; n = 47) participated. Each participant filled out one of the three questionnaires while thinking aloud. The analysis of their utterances revealed problems in both health literacy groups with form-filling tasks and subtasks for all three questionnaires. Most noticeable were the problems with the IPSS; the terminology and layout of this form led to difficulties. In the VPSS and SVPI, the pictograms sometimes raised problems. As in previous research on form-filling behavior, an overestimation by form designers of form fillers' knowledge and skills seems to be an important explanation for the problems observed.

Keywords: health literacy; lower urinary tract symptoms questionnaires; working-aloud method.

Figure 1

International Prostate Symptom Score (IPSS). Dutch translations: “Internationale Prostaat Symptonen Score (IPSS)”. “Hoe vaak had u de afgelopen maand het gevoel dat de blaas nog niet leeg was nadat u had geplast?”. “Nooit”; “Minder dan 1 van de 5 keer”; “Minder dan de helft van de keren”; “De helft van de keren”; “Meer dan de helft van de keren”; “Bijna altijd”. “Hoe vaak moest u de afgelopen maand binnen 2 uur nadat u geplast had weer plassen?”. “Hoe vaak merkte u de afgelopen maand dat tijdens het plassen de straal enkele keren stopte en weer begon?”. “Hoe vaak had u de afgelopen maand moeite om het plassen uit te stellen?”. “Hoe vaak had u de afgelopen maand een zwakke urinestraal?”. “Hoe vaak moest u de afgelopen maand persen om de urinestraal op gang te brengen?”. “Hoe vaak moest u de afgelopen maand per nacht opstaan om te plassen?”. “Quality of Life ten gevolge van symptomen van uriwegen”. “Als het plassen uw hele leven zou blijven zoals het nu is, hoe zou u zich daar bij voelen?”. “Gelukkig”; “Plezierig”; “Over het algemeen tevreden”; “Gemengde gevoelens”; “Over het algemeen ontevreden”; “Ongelukkig”; “Zeer ongelukkig”.

Figure 2

Visual Prostate Symptom Score (VPSS) [9]. Dutch translation of “6 or more”: “6 of meer”.

Figure 3

Score Visuel Prostatique en Image (SVPI) [21]. English translations: “Less than 3 times”; “3 to 5 times”; “6 to 7 times”; “8 to 9 times”; “10 to 11 times”; “12 times or +”. “How often do you urinate during the day?”. “0 times”; “1 time”; “2 times”, “3 times”; “4 times”; “5 times or +”. “How often do you urinate at night?”. “Do you have pressing urges?”. “How strong is the urine stream?”. “Do you urinate satisfactorily?”. Dutch translations: “Minder dan 3 keer”; ”3 tot 5 keer”; “6 of 7 keer”; “8 of 9 keer”; “10 of 11 keer”; “12 keer of meer”. “Hoe vaak moet u overdag plassen?”. “0 keer”; “1 keer”; “2 keer”, “3 keer”; “4 keer”; “5 keer of meer”. “Hoe vaak moet u ‘s nachts plassen?”. “Hebt u wel eens hoge nood?”. “Wat is de kracht van de straal?”. “Hoe tevreden bent u over het plassen?”.

Figure 4

Task analysis.