You are in pretty good shape compared to a lot of people, unless you want more surgery.
Anonymous¹

To a patient wearing 1 to 2 pads per day following curative prostatectomy, the statement above may have been accurate and intended to be reassuring advice coming from one’s urologist. To the patient hearing it, however, it came across as a message of hopelessness and a lifetime of pads. That same man quoted above went on to undergo surgical intervention for stress urinary incontinence (SUI) with substantial improvement in quality of live (QoL) measures.¹

As reconstructive urologists, we are typically treating patients for QoL issues, making it vital to understand what is impacting the patients’ QoL now and what options are on the table to improve it. This requires deep and individual insights into the patient’s perspective. Patient perspectives can—at times frustratingly—be incredibly diverse and dynamic. A “win” for one patient may be worst case scenario for another, and may not be the same now as it will be in 6 months. Historically in reconstructive urology, we have utilized objective outcome measures (stricture-free based on 17F cystoscopy, pad-free after incontinence surgery), but this view of outcomes is not necessarily patient centered. In order to understand patient-oriented outcomes, help inform the shared decision-making process, and ultimately provide patient-centered care, it is critical for us as reconstructive urologists to hear and understand the patient voice.

Qualitative and mixed methods (combination of quantitative and qualitative) research in reconstructive urology offers one avenue to capture patient perspectives in an otherwise clinician-oriented quantitative landscape. Specifically, thematic analysis is a type of qualitative research that seeks to identify common threads or themes collected from controlled patient interviews. Typically, cohorts of participants are interviewed to obtain their experience in the area of study (eg, men living with incontinence after prostate cancer treatment). These interviews are typically semistructured. All participants get the same questions but are also free to expand on topics or thoughts relevant to them. Interviewers are trained to allow and promote this loose structure to extract relevant dialogue, which is transcribed word for word. These transcriptions are then analyzed by trained personnel and given “codes” that emerge through an iterative process. Through an iterative 6-step process, representative thoughts from participants are grouped and analyzed.² The result is a cogent and understandable display of individual patient experiences that can also be combined with objective data (eg, surgical outcomes) to produce high-quality, patient-centered, actionable research.

Thematic analysis and qualitative (including mixed methods) research informs and improves quantitative research by driving patient-centered quantitative research questions and lines of inquiry. For example, a recent review of 5 qualitative studies in pediatric urology highlights previously underexplored sexual and fertility challenges in the congenitalism population.³ Giving the patient a voice—particularly on sensitive issues (eg, financial toxicity, sexual health, fertility)—offers new avenues of study that can both expand existing research questions and better serve patients. Additionally, qualitative research may offer insight into gaps in existing quantitative research which may not be able to be answered with quantitative results. This may be particularly true in health care disparities work. Why are certain groups more likely to experience negative outcomes? What factors are we missing? These may be questions best answered, or at least initially explored, through qualitative data.

In addition, qualitative research can make an immediate impact. An improved understanding of the patient experience through thematic analysis may allow for a better understanding of the patient experience. Hearing that incontinence “impacts QoL,” for example, is different from reading a patient’s take on this: “And being incontinent is terrible when you are wet all the time…. It totally affected my life. I didn’t want to go out, I couldn’t do anything. So, it was very disabling for me, being incontinent. It was horrible (Figure).”⁴ In addition, qualitative analysis can help us understand patients’ perspectives on drivers of treatment decisions, which can help us as providers to improve shared decision-making in treatment discussion with patients. It can even help incorporate the patient perspective into the measures we use to measure treatment success.

Figure. Word cloud from qualitative interviews for men with stress urinary incontinence when asked about their lived experience with incontinence.

Arguably one of the most important impacts of this type of work to the practicing urologist is the immediate clinical applicability of qualitative research to daily practice. The results of thematic analysis can be thought of as deconstructed patient counseling. If a reconstructive urologist can hear the organized and often harrowing patient experience through qualitative research, it can be immediately clinically actionable in counseling, patient decision-making assistance, and normalizing challenging topics. Direct patient quotes are “talk tracks” for patient counseling—you can provide your patients a voice on lived experience by proxy. For example, we ask all patients living with SUI about SUI and sex, particularly oral sex, because of the following quote: “No, I wouldn’t say [sex and incontinence] were separate at all. Oral sex is impossible for me to receive while I have urinary incontinence. I mean only in the most bizarre circumstance would that be possible, right?”¹ One can imagine that even a patient with low objective measures of incontinence could be tremendously bothered if it precluded important aspects of life like continued sexual intimacy. These patient perspectives can result in implementation of clinical practice changes that benefit patients.

Qualitative research offers an alternate and complimentary path, particularly in spaces where not all wins look alike. However, given the general lack of experience of researchers in analyzing, interpreting, and reviewing qualitative research, it can be difficult to get qualitative research published. As such, it is critical that we provide training to emerging investigators and clinicians about qualitative research methodologies so that we can promote the incorporation of qualitative research into the reconstructive urologists’ armamentarium. This training will also benefit reconstructive urologists applying for research funding, given that grant submissions are increasingly focused on incorporating a qualitative component in order to ensure that research is patient facing. We encourage investigators to include qualitative analyses in their research portfolios, and call for journals to increase review and publication of qualitative and mixed methodology studies in order to provide this critical perspective. We hope patient-centered research efforts will become more commonplace, giving a voice to the patient, and leading to improved patient-centered care in the process.