Stone treatment: What do the patients want?

Interventional stone treatment patterns have dramatically changed within the last 35 years. Open stone surgery, standard until the late 70ies was replaced by minimal-invasive technique starting with percutaneous nephrolithotomy (PNL), followed and soon replaced as well for a decade by extracorporal shock wave lithotripsy (SWL), and since 20 years by ureterorenoscopy (URS).

These changes were driven by technological progress and wider availability of those technologies on one hand, and on the other hand by patient expectations, as well as the urologists’ preferences which play an important role for treatment selection. Current treatment patterns in most industrialized countries demonstrate a significant decrease in SWL, which has been replaced by URS in many places.

Although URS seems to be the winner of the race, there is a clear shift towards endoscopy and PNL frequency is also increasing. It is noteworthy that even in Germany, the so-called ‘motherland of shock wave,’ some larger hospitals have already decided against acquiring a new machine. However, while more and more urologists recommend primary URS (and not SWL) to their patients, they may vote for SWL if they would require a treatment of their own urinary calculi.

All minimal-invasive treatment modalities can be considered for stone intervention, according to the EAU Guidelines on Urolithiasis, especially for stones from 10-20 mm. The advantage of PNL and URS is the faster stone-free status, usually in a single session, while the advantage of SWL is the lower morbidity and the application without general anesthesia. The main argument against SWL is therefore the longer time until stone fragment pass and the need of repeated treatments in some patients.

However, as for all medical treatments, we focus on the aims and expectations of our patients. All three modalities should be offered to the patient, and to remain unbiased an endourologist should have access to all of these modalities. What our patients want is the result of a good explanation of the techniques by the doctor and – many have stone recurrences – experiences with prior treatments. We should perform the treatment they choose, and not what we expect them to like most. This article gives an overview on papers evaluating patients’ desires and expectations, including intervention and prevention.

Stone intervention

Skenazy et al. evaluated in 2005 treatment preferences of urologists in Minnesota. The wide range of answers, including all modalities, underlined the broad treatment options and the factors that have an impact on doctors’ choice. These factors do not necessarily reflect medical aspects, but others such as doctor’s age, urban environment or training. The availability of first-line treatments with equal efficacy makes both recommendation and choice of a procedure difficult What do the patients want? There is not much data published on this important issue. While there are thousands of papers on treatment modalities and options, there are only few papers evaluating patients’ preferences, satisfactions and expectations.

Chandrasekar recently performed an internet-based survey on urolithiasis and patient satisfaction. Four hundred forty-three respondents completed the survey. The majority (46%) were treated ureteroscopically, followed by extracorporeal shock wave lithotripsy (SWL, 25%) and percutaneous nephrolithotomy (7%). Other treatments included spontaneous passage (13%), medical expulsive therapy (7%), and home remedies (2%). Sixty-four percent of respondents deemed their treatment ‘‘successful,’’ while 36% reported their treatment as either ‘‘partially successful’’ or ‘‘unsuccessful.’’ Unsuccessful treatment was more likely for SWL (17%) and home remedies (14%) ( p = 0.002). Most respondents (52%) reported being either satisfied or very satisfied with their treatment choice; however, a certain fraction of patients was unsatisfied with their treatment (Figure 1). Satisfaction did not vary significantly by treatment type, but was significantly associated with treatment success.

Thummar et al. (2014) sent a questionnaire on ureteral stones to patients with urolithiasis history . The replies were scored using a 5-point Likert Scale. Overall, more patients chose URS vs. SWL (62% vs. 38%, P = 0.03). Ninety-five percent of patients cited stone-free success as extremely or largely important, followed by risk of complications (85%), need for second surgery (66%), and the need for a stent (47%). For patients who chose URS, stone-free success rate and need for a second surgery were of greater importance compared to those who chose SWL. Conversely, for those who chose SWL the need for a stent after surgery was of greater importance compared to the URS group.

Is it helpful to involve patients in clinical decision making? This question was evaluated by Margalith et al. in 1997. Forty-two of the subjects (the experimental group) were given information about two alternative treatments, ESWL and URS, and were asked to choose which therapy they preferred. Fifty-four subjects (the control group) were not given information, not allowed to choose, and were treated according to the physician’s decision. Subjects’ level of anxiety was compared within each group on three occasions: before meeting with the physician, immediately afterwards and upon hospitalization for treatment of the stone.

Patients’ perception of receipt of information and participation in clinical decision-making, coping style, educational level, and knowledge about treatment alternatives were also measured. A statistically significant decrease in anxiety after meeting with the urologist was found among patients who were not asked to participate in the decision-making process and among patients who perceived that they had received information. A decrease in anxiety after meeting with the physician was also found among patients who, according to their own perception, did not participate in decision-making.

Patient anxiety

Patients’ educational level and coping style were related to their anxiety. A decline in anxiety was found among those with a lower educational level who perceived that they had received information and among higher educated patients who perceived that they participated in clinical decision-making.

Anxiety also declined among patients with a passive coping style who perceived that they had received information or had participated in the decision-making process. The results emphasize the need to tailor the therapeutic approach to patient characteristics.

Another dilemma has been the lack of disease-specific questionnaires for life quality of urolithiasis patients.

In 2014, Penniston and Nakada developed, therefore, the Wisconsin Stone QOL, to assess the quality of life of patients with stones. Included patients for evaluation and validation were recurrent stone formers including those with and those without current stones. A preliminary instrument was created, followed by patient feedback and item reduction. A 28-question instrument was ultimately developed which was tested for reliability as well as internal face, construct and discriminant validity in 248 stone formers.

The Wisconsin StoneQOL seems to be capable of assessing the health related quality of life of stone formers at various points along the disease continuum. Future assessment will establish minimal clinically important differences for use in individual patients.

Only few patient initiatives exist for urolithiasis in contrast to oncological diseases. This might explain why we know so little about their expectations and fears. An interesting concept, driven by patients and urologists in the US, is the webpage www. stoneformers.org. This page gives excellent information on the whole disease, as the EAU Patient Information page (patients.uroweb.org) does. But what makes this group interesting is the voting they usually do on several topics as satisfaction after treatment or stent morbidity.

Stone prevention

The EAU Guidelines on Urolithiasis recommends metabolic evaluation and preventive measures in high-risk stone formers. However, most patients do not receive such recommendations by their urologists. On the other hand, long-term compliance to medical treatment is often frustrating.

Bensalah et al evaluated how physician and patient perceptions differ regarding medical management of urinary stone disease. A total of 159 patients were prospectively interviewed. Patients were asked three questions concerning subjective tolerance of stone passage and surgical intervention weighed against the use of daily preventive medication.

The same questions were sent to members of the Endourological Society. The results were: Mean +/- SD patient age was 51 +/- 14 years. Recurrent stone formers comprised 72% of patients and 76% had undergone a prior surgical procedure while 43% were taking prophylactic medication. Overall, 81% and 88% of patients responded that they would rather take medication than tolerate a single stone event at home or in the emergency room, respectively.

Likewise 92% of patients stated that they would prefer daily medication compared to any surgical procedure. Among 61 urologists 26%, 38% and 18% responded that patients would likely tolerate one, two or an unlimited number of stone passages at home, respectively, before agreeing to take medication. Of the urologists 66% estimated that patients would tolerate up to two acute stone events requiring an emergency room visit before starting medication. In addition, 20%, 31% and 33% of urologists presumed that patients would accept the need for surgery annually, every other year or every third year rather than take medication.

Preventive medical treatment

Most patients with stones will consider preventive medical therapy to avoid recurrent pain or a surgical procedure. In contrast, most urologists perceive that patients prefer to avoid medication even if it means tolerating several acute stone events and/or surgical procedures.