Our survey instrument allowed for characterization of patient experiences with PCN and its impact on health-related quality of life. In our patient cohort, pre-operative PCN placement improved pain in a majority of patients and did not interfere with QoL in terms of work performance or urinary symptoms. However, patients found that PCN interfered most with daily activities and their ability to engage in exercise, and were neutral regarding changes in sexual health. Overall, patients felt satisfied in their understanding of the purposes of PCN placement and its role in improving their surgical outcome, showing how it may continue to be employed for ureteral rest prior to ureteral reconstruction.
The role of tissue rest was initially well-established in the context of urethral reconstruction in patients with urethral strictures prior to urethroplasty.3, 14–16 Terlecki et al. found that urethral rest from endoscopic manipulation allowed for enhanced detection of fibrotic stricture segments, as well as accurate radiographic identification of stricture length and location.15 Likewise, implementation of ureteral rest prior to definitive reconstruction has been associated with improved surgical outcomes for patients with ureteral stricture disease. Lee et al. retrospectively compared outcomes of robotic ureteral reconstruction in 234 patients who either underwent ureteral rest or did not undergo ureteral rest for management of proximal to mid-ureteral strictures3. Ureteral rest was defined as the absence of hardware, such as a ureteral stent or percutaneous nephroureterostomy tube, across a ureteral stricture for at least 4 weeks prior to robotic reconstruction. Patients who underwent ureteral rest were associated with a higher success rate (90.7% versus 77.5%, respectively; p = 0.027) and lower estimated blood loss − 50 mL versus 75 mL, respectively (p < 0.001) compared to those not undergoing ureteral rest3. Given ureteral rest prevents continuous microvascular injury which may be perpetuated with ureteral stenting, pre-operative PCN placement plays an integral role in allowing for healing of ureteral tissue and maturation of ureteral strictures prior to surgery.15, 17 Since there is an overall lack of evidence-based guidelines framing the indications for ureteral rest, understanding the nuances of patient QoL due to subsequent PCN placement is especially crucial.
External urinary drainage through urethral catheters, suprapubic tubes (SPTs) and PCNs has been shown to have a notable impact on quality of life, as demonstrated by several studies. In this present study, 65% strongly agreed or agreed that PCN improved their pain prior to surgery. A longitudinal descriptive study of 150 patients also found that patients had significant pain reduction following first-time PCN placement (p < 0.01).10 Using the European Quality of Life-5 Dimensions (EQ-5D) questionnaire, they found that PCN placement significantly diminished overall patient QoL in terms of mobility, personal care, daily activities, and anxiety (p < 0.05), with daily activities being the most altered QoL dimension.10 Similarly in our study, a majority of patients found it challenging to enjoy everyday activities and exercise with PCN in place. To assess the impact of other forms of external urinary drainage, the catheter-related quality of life tool is a validated instrument employed for long-term urinary catheter users who use indwelling urethral or suprapubic catheters permanently.18 Wiedemann et al. surveyed 357 patients with long-term SPTs or urethral catheters and found a negative impact on QoL related to fear of urine leakage, urine odor, painful catheter exchanges, and increased frequency of urinary infections.19 These patients also reported negative effects on their everyday life activities due to the catheter.19 Patient-reported outcomes play a crucial role in informing clinical indications for the utilization of urethral catheters, SPTs, and PCNs as these methods are variably tolerated and have a substantial impact on patient well-being.
Ureteral stenting is alternatively employed by urologists to relieve upper urinary tract obstruction in patients with ureteral stricture disease prior to reconstruction and has been shown to impact health-related QoL. The ureteral stent symptom questionnaire is a validated instrument that has been used in prior studies to measure the impact of ureteral stents. Using this tool, prior studies have found that indwelling ureteral stents have a significant impact on QoL in terms of pain, urinary symptoms, and general health.20 Scarneciu et al. analyzed the prevalence of symptoms and complications of ureteral stents in 2200 patients through completion of questionnaires before stent placement, 7 days after placement, and 14 days after removal.21 It was found that frequency of uncomfortable symptoms was significantly higher 7 days after stent insertion in terms of urinary frequency, dysuria, urgency and macroscopic hematuria (p < 0.05).21 In patients with malignant ureteral obstruction, Shvero et al. studied changes in QoL in those managed with PCN and tandem ureteral stents using QoL and tube-symptom questionnaires.22 Among 107 patients with malignant ureteral obstruction, both methods had a negative impact on QoL and urinary symptoms without a significant difference between them.22 Joshi et al. compared changes in QoL in 34 patients managed with either PCN or ureteral stents using the EQ-5D questionnaire and intervention specific questions to assess for pain, urinary symptoms, and impact on daily activities.23 Although there were no significant differences in overall physical and psychosocial function in terms of average EQ-5D score between both groups, patients who had a stent experienced significantly greater irritative urinary symptoms (p < 0.0001) than those with PCN.23 In comparison, we found that a majority of patients with PCN did not report severe urinary symptoms, including leakage or blood in their nephrostomy bag. Notably, patients with PCNs required more help in the daily care of the nephrostomy tube than those with ureteral stents. In contrast, a majority of our patients did not find PCN challenging to care for. Both ureteral stents and PCNs have notable impacts on QoL- ureteral stents are associated with increased discomfort and urinary symptoms while PCN is generally better tolerated amongst patients, underscoring the significance of patient-reported outcomes in treatment selection.
Our study is not without limitations. Major limitations of this study are the small sample size and the retrospective nature of the patient interview process. This is also a single-institution, single-surgeon series and therefore may not be widely generalizable. Given we administered the PCNSQ to patients retrospectively, recall bias may have influenced patient answers. Since our survey instrument has not been previously validated as an objective symptom assessment tool, patient response bias based on subjective interpretation of certain questions during the interview process is possible. Further validation of our survey instrument in a larger patient population may increase its reliability in providing empirical evidence for the clinical decision-making process of PCN use for ureteral rest.
Health-related QoL is based on patient perception of their disease and how its management influences the physical, social, and emotional domains of everyday life.24 Measuring QoL allows for an enhanced understanding of the confluence of these domains, thereby capturing the diversity of patient experiences in a standardized manner.25 Considering underserved populations are more vulnerable to decreases in daily QoL through interventions such as PCN, achieving this understanding to investigate the effectiveness of health interventions is paramount.26 Although patients may have a large apprehension to PCN placement, our patients’ experiences demonstrate that it is found not to limit their QoL in terms of pain, work performance, urinary symptoms, sexual health, and ease of follow-up care. This may stand an important finding to relay to patients who are posed with need for PCN placement ahead of surgery. Our PCNSQ tool can be further utilized to quantify the personal implications of PCN on patients, thereby influencing PCN utility prior to ureteral reconstruction.