Read our latest article on the problems functional urology patients experience in providing information ahead of their doctor’s appointment. By F.W.M. Schlatmann (Dept. of Urology, Spaarne Gasthuis, Hoofddorp, NL), M.L. van Poelgeest–Pomfret (WFIPP) and M.R. van Balken (Dept. of Urology, Rijnstate, Arnhem, NL)
In functional urology, efficiency is sought by asking patients to complete questionnaires before their appointment to evaluate their symptoms. This is difficult for a large number of patients, according to research on the IPSS and bladder diaries. In this review article, we describe the threats to the validity and thus the usability of these questionnaires. Making questionnaires easier to understand and involving the target group in the development of the questionnaires can improve the quality of information from the patient to the medical professional.
The quality of care provided by medical professionals is based on an adequate evaluation of the patient’s complaints. A thorough evaluation of these complaints is needed to gain an insight of the symptoms and determine the most targeted and effective treatment(s), particularly in the case of functional urology. However, due to increasing demands in healthcare, efficiency is being sought. By asking patients for information about their functional urological complaint before their appointment, part of the evaluation has already taken place beforehand, allowing for more efficient and effective contact with the medical professional. The information requested from patients is often obtained in the form of a questionnaire. In this review article, we describe the threats to the validity and thus the usability of these questionnaires and how to improve the quality of information from the patient to the medical professional.
The advantage for patients of filling out the questionnaires in advance is that they already indicate more about their complaint before their actual appointment with the medical professional, enabling them to take the time they need and perhaps ask for the opinion of another person (such as a partner) if desired.
The disadvantage of these questionnaires is that a substantial number of patients have serious difficulty understanding and completing these questionnaires. Limited health literacy is not a minor problem: a large comparative report on health literacy in Europe reported that about 12% of participants have totally inadequate general health literacy and more than a third (35 %) have problematic general health literacy [1]. Because of the strongly increased use of mostly verbal (digital) questionnaires, a progressive health gap in patients with limited health literacy arises. When this patient group is asked to express their functional complaint through a questionnaire, this often leads to incomplete questionnaires or unreliable information.
Male LUTS, such as nocturia, urge incontinence or difficulty with micturation, are divided into storage symptoms and irritative symptoms. Worldwide, the most frequently used LUTS questionnaire for men is the IPSS. This questionnaire is used to assess symptom severity before, during and after treatment. It consists of eight questions: the first seven refer to storage and irritation symptoms, the last question refers to the impact that urinary symptoms can have on quality of life. In urology, the IPSS is considered the gold standard for objectifying the degree of LUTS in men and is therefore often used in, for example, assessing the effects of new treatments.
However, several studies have revealed problems in completing this fully verbal questionnaire [5,6]. Self-completion of the IPSS was found to result in incomplete questionnaires in 53–73 % [7–9]. The degree of completion of a self-completed IPSS was found to be related to patients’ education level: the lower a patient’s education level, the less likely they are to be able to complete the IPSS without assistance [10–12]. A similar relationship was found between education level and correctness of symptom representation when completing this questionnaire [13,14]. A reading level of grade 6 is required to read and understand the IPSS, and due to reading and comprehension difficulties, a significant group of patients needed help from others in completing the IPSS [15]. A study that had partners fill in the IPSS showed that partners are only moderately able to reliably replace their partners. 46.5 % scored the patient’s symptoms in the same severity category (mild, moderate, severe), 51.2% differed in one category and 2.3 % differed in two categories. Partners tended to slightly overscore, and therefore, seemed only moderately able to assess true symptom severity. Even for quality of life, partners proved only moderately reliable [16].
Qualitative research into understanding the nature and causes of these comprehension problems using the aloud working method [6] showed semantic interpretation problems with the terms ‘bladder’, ‘weak’, ‘urinary stream’ and ‘month’. The answer option ‘less than 1 out of 5 times’ was also described as an unclear answer option. Interpretation of what was meant by ‘in the past month’ was difficult for men. In addition, the table format of the IPSS often posed problems and the quality-of-life question placed below the table was often overlooked.
Another frequently used list when evaluating functional urology problems and treatment effects are the bladder diaries. Patients are asked about the amount, timing and frequency of micturition and fluid intake. The degree of urge and urine loss are also recorded, as are the time of waking up and sleeping. The data are entered into a table for 24 h (several times). If completed properly, the list provides valuable information.
The reliability of the bladder diary depends heavily on the completeness and accuracy with which the data are filled in. However, completing such a diary is not easy either. Literature shows that 80–90% of patients returned the bladder diaries, while only 50–66 % were completed in full [17]. The frequently cited reasons for incomplete return of bladder diaries were: 1) the patients had not received the list or were not aware of its existence, 2) they do not understand the relevance of a micturition list to their problem, 3) they are too busy, 4) they are at work or 5) they give other reasons, such as “every day is different” or “forgot” [18]. Enquiries revealed that only 53 % of those completing the micturation list after each micturation and 31 % do so at the end of the day; for the rest of the ‘completers’, a combination of both [18]. Younger age and lower education level are correlated with lower response rates and unusable micturation lists [17,18]. A review of incorrectly completed micturation lists showed difficulty in keeping track of micturition volumes, indicating amounts at a time and indicating urge [19].
To improve the validity and thus the usefulness of urological questionnaires, we need to make it easier for patients with functional urological problems to provide information about their symptoms, and, as a result of that, to provide urologists with more reliable information. An important, yet often lacking, component in developing new, easier-to-understand questionnaires is the collaboration with participants themselves, preferably with different levels of health literacy. By including the target group in the development, an overestimation by form designers of patients’ knowledge and skills is duly prevented. Literature shows that purely text-based questionnaires are difficult to understand for patients with limited health literacy. The combination of text with pictograms is better understood; visual questionnaires are more effective than written questionnaires, especially among the less educated populations [20]. Also, a video-based educational tool improves patient comprehension of, for example, common prostate health terminology [21]. A spoken animation appears to be the best format to convey complex health information to people with low health literacy; this format can even bridge the information processing gap between audiences with low and high health literacy [22]. Animations do not negatively influence high health literate audiences: it is concluded that information adapted to audiences with low health literacy suits people with high health literacy as well [22].
A slightly lesser-known but arguably effective transfer of information takes place with photostrips: visual stories with pictures and captions about topics at play when visiting the doctor [23]. Initial pilot studies of the newly developed medifoor, a visualised medical metaphor with a short story, demonstrate that understanding of an abstract or complex concept improves by linking it to a recognisable everyday object or concept [24].
Faced with the need for an easier-to-understand alternative to the purely verbal IPSS and bladder diaries, new, simplified versions of these questionnaires are currently being designed.
For the IPSS, several alternatives were developed; the two best known are the fully visual South African “Visual Prostate Symptom Score” (VPSS, Fig. 1a) [9] and the French “Score Visuel Prostatique en Image” (SVPI, Fig. 1b) [25], which combines visuals with verbal questions. Qualitative research on these variants [6] showed that both alternative questionnaires were found to lead to a variety of problems too, with the SVPI performing relatively well compared to the IPSS and the VPSS. In an attempt to develop a new LUTS questionnaire that would be as easy to understand as possible, a qualitative study was conducted using the work-aloud-technique. The SVPI was used as a starting point and was incrementally developed from the patients’ perspective. Thirty-seven men with different levels of health literacy completed several versions of the questionnaire while thinking aloud. Each time, both thinking aloud utterances and participants’comments were used to adjust the questionnaire. Based on their feedback, the questionnaire was modified in four rounds, resulting in the Dutch Reduced Illustrated Prostate Symptom Score (DRIPSS, Fig. 1c) [26]. Participants’ thinking-aloud utterances and their comments during the interviews suggest that the new DRIPSS will largely eliminate patients’ completion problems.
Above: Fig. 1. Visual alternatives to the IPSS.
For the bladder diaries, an alternative fill-in instruction was investigated [27]. It is expected, following the previously mentioned study results on spoken animations, that an animated fill-in instruction could increase the patient’s understanding of what is expected compared to the textual fill-in instruction. The textual filling-in instruction proved difficult for people of all education levels. As it turned out, the terminology used was difficult to understand, especially the terms “urge”, “involuntary” and “millilitre”. The animated fill-in instruction combined clear language with understandable visuals, which improved comprehension of the bladder diary for all levels of education. Participants reported the amount, timing and frequency of micturition and fluid intake more adequately particularly with regard to the improved results of participants with low education levels. They also indicated more accurately their incontinence and urge symptoms, and whether they changed pads. Non-native speakers appreciated clarification of the text with visuals: comprehension improved and these participants felt less insecure. The follow-up study has been designed examining three conditions: the textual fill-in instructions, an optimised textual variant with visuals (examples shown in Fig. 2) and the variant with an animated fill-in instruction.
Above: Fig. 2. Examples of visuals that support the fill-in instructions for bladder diaries.
The search for additional ways to streamline the flow of information from the patient to the healthcare professional is in full motion. The development of digital medical apps is progressing rapidly. Because many people carry an electronic device with them throughout the day, this can support the completeness and accuracy of data recording such as fluid intake, micturations and moments of incontinence. Apps for taking measurements at home are also making their appearance, such as in-home measurement of urinary flow by analysing the sound of your urine stream hitting the water in the toilet.
Another example is decision aids with interactive animation that can inform the patient on the one hand and ask questions on the other about which values are important to the patient in their treatment and quality of life in order to arrive at tailored advice.
If the patient is unable to fill in the requested information themselves, help can be provided by caregivers or a nurse who verbally administers the questionnaire. Assisting the patient in completing the form is different from completing it for them; the latter has been shown to lead to unreliable results [16]. The acceptance of help from other than a doctor can vary across continents.
However, there is also a downside to these new instruments. Developing understandable visuals is time-consuming and costly: creating a clear visual that is interpreted correctly is difficult. The involvement of the target group is essential: both in assessing the choice of subject (what does the patient need?), but also in the implementation and interpretation of that implementation (does the result fulfill the patient’s needs?).
Because the development of these instruments is costly, subsidies or sponsorship are often required. For these financiers, it is lucrative to invest in subjects that involve large numbers of patients. This is difficult in functional urology: patient populations are relatively small and pathophysiology and treatments are not as straightforward as in other (onco)urological areas of interest. As a result, functional developments are often found behind a paywall or accompanied by advertisements.
In addition, the digital skills and technical access of our patients is overestimated: for some of them, online activities are a difficult path to navigate. For example, where functional complaints increase with age, the geriatric population makes up a large part of the patient population. However, this patient group makes substantially less use of digital patient portals, have more difficulty accessing electronic patient records and makes less use of apps related to their medical treatment.
This does not mean that we should halt digital progress in healthcare, but we will have to take greater account of a significant proportion of our patients for whom this is still a bridge too far.
In functional urology care, efficiency is sought by asking patients to complete questionnaires evaluating their symptoms before their appointment. This is difficult for a large number of patients, as studies of the IPSS and bladder diaries have shown. It should be taken into account that if comprehension problems were found with these two questionnaires, this may also be true for other commonly used questionnaires in functional urology. The comprehension problems pose a serious threat to validity and thus the usefulness of these questionnaires. After all, inaccurate information because patients did not understand the questions may lead to serious problems: overtreatment in the form of unnecessary procedures, surgery or medication, or undertreatment in the form of patients not receiving the necessary therapy for unreported symptoms. Making questionnaires easier to comprehend reduces misreporting. In this improvement process, it is essential to include the target group to overcome an overestimation by form designers of a form completer’s’ knowledge and skills.
For all details, footnotes and references, please refer to the full article download below (PDF).