Patient-reported outcomes are being increasingly prioritized within clinical research as well as in routine clinical practice to assess symptoms, inform treatment decisions, facilitate communication, and track outcomes.¹ One important patient-reported outcome is health-related quality of life (QOL), which is a multidimensional construct of how illness may affect an individual’s well-being.² Measuring QOL is particularly relevant in patients with nephrolithiasis due to the wide spectrum of disease activity observed over time which may not correlate with traditional objective indices, such as stone-free status on imaging.³

Despite the importance of QOL, there is minimal literature addressing this concept within nephrolithiasis, particularly prospectively following surgical treatment. In fact, a systematic review of the literature found that only 9 studies specifically addressed QOL in renal stone formers.⁴ These studies were limited by their retrospective and cross-sectional nature, lack of standardized assessment following surgical treatment, and short-term follow-up. To address this area of unmet need, our group and others have taken a renewed interest in better understanding how surgical treatment for nephrolithiasis impacts QOL in the short, intermediate, and long term. Ultimately, gathering these data will allow clinicians to provide more in-depth, accurate, and patient-centric counseling preoperatively, helping patients better understand a recovery trajectory, and the degree and time course of family, social, and professional disruptions on their life.

In the short term, it is evident that ureteroscopy (URS) has a profound impact on QOL. For URS, the dimensions of pain intensity (eg, pain at its worst, average, and now) and interference (eg, pain disrupting day-to-day activities) are both worse after surgery.⁵ However, each recovers relatively quickly with pain intensity returning to baseline sooner (at postoperative day [POD] 7) than pain interference (at POD 14), suggesting that interference is a more sensitive measure or accurately describes the experience as perceived by our patients (Figure 1).⁵ Interestingly, the only factor, including placement of a ureteral stent, that modified these scores was older age, which demonstrated a more favorable recovery.⁵ This confirms that a resolution of pain following URS will typically occur within 7–14 days facilitating a return to daily activities.

Similar findings were also observed in our recently concluded study examining the impact of URS on the dimension of ability to participate in social roles (eg, trouble doing all of the family activities that I want to do). In this case, URS significantly reduced the ability to participate in social roles immediately after surgery (POD 1), but this had largely returned to baseline by POD 7, and significantly outperformed the general population by POD 14 (Figure 2). This suggests that surgical therapy may not only allow a return to baseline social functioning for those with nephrolithiasis, but may enhance it, facilitating even greater ability to engage in family-, friend-, and work-related social interactions.

Despite the general trend toward a relatively rapid recovery following URS, there remains wide individual variation in the intensity with which symptoms are experienced, and with recovery, particularly with the presence of an indwelling ureteral stent. The prospective observational study (STENTS), which included a nested cohort of 40 individuals undergoing unilateral URS with ureteral stent placement, completed questionnaires to track the trajectory of stent-associated symptoms every day until removal.⁶ This study was the first to ascertain the day-to-day variation in pain intensity, pain interference, urinary symptoms, and bother after URS with stent placement. All 4 study measures peaked in value by POD 1 and remained above baseline until after stent removal.⁶ Universally, each measure showed wide inter-individual variability of reported symptoms each day. This highlights the need for further investigation into what factors may exacerbate and/or mitigate the observed extremes in symptomatology.

Although post-ureteroscopic recovery appears to be relatively short, at least for the dimensions of pain intensity and interference, there are certain dimensions that may have a longer tail of improvement. In a yearlong cohort study examining URS, there was an intermediate-term recovery in pain inference and fatigue at 1 month, but a longer-term recovery in the additional dimensions of physical function and participation in social roles/activities at 6 months with the remaining dimensions of anxiety and sleep disturbance not corrected until 12 months (Figure 3).⁷ There was no change in depressive symptoms.⁷ This suggests that both physical and emotional recovery may be prolonged, which is not surprising given the unpredictable nature of episodes of renal colic. A more robust investigation into the psychological impact of surgery and recuperation may identify additional strategies to aid and support patients.

Despite the growing interest and emerging data on QOL, we are still only at the initial phase of understanding how stone disease itself as well as the surgical and nonsurgical treatment options impact QOL, and how we can translate this knowledge into improved care delivery for this patient population. Thankfully, the research landscape is rich with either ongoing studies such as the Pediatric KIDney Stone (PKIDS) Care Improvement Network’s pragmatic surgical trial assessing how the 3 surgical modalities for the treatment of kidney stones in children vary in their effect on the dimensions of anxiety, sleep, interpersonal relationships, urinary symptoms, and pain interference,⁸ or the recently awarded SOUL MUSIC project with a main objective to understand QOL after URS and to determine whether avoiding stent placement with URS would be advantageous for patients,⁹ and, finally, the patient-prioritized research agenda for children and adults with kidney stones, which aims to facilitate the partnership of clinicians and researchers with patients and caregivers in order to emphasize, educate, and empower the patient when establishing a research agenda.¹⁰