Patients’ Experiences with the Removal of a Ureteral Stent: Insights from In-Depth Interviews with Participants in the USDRN STENTS Qualitative Cohort Study

Abstract

Objective:

To describe the experiences of patients undergoing stent removal in the USDRN Study to Enhance Understanding of Stent-Associated Symptoms (STENTS), a prospective, observational cohort study of patients with short-term ureteral stent placement post-ureteroscopy.

Methods:

We conducted a qualitative descriptive study using in-depth interviews. Participants reflected on (1) painful or bothersome aspects of stent removal, (2) symptoms immediately after removal, and (3) symptoms in the days following removal. Interviews were audio-recorded, transcribed, and analyzed using applied thematic analysis.

Results:

The 38 participants interviewed were aged 13 to 77 years, 55% female, and 95% White. Interviews were conducted 7–30 days after stent removal. Almost all participants (n=31) described that they experienced either pain or discomfort during stent removal, but for most (n=25) pain was of short duration. Many participants (n=21) described anticipatory anxiety related to the procedure, and several (n=11) discussed discomfort arising from lack of privacy or feeling exposed. Interactions with medical providers often helped put participants at ease, but also increased discomfort for some. Following stent removal, several participants described lingering pain and/or urinary symptoms, but these largely resolved within 24 hours. A few participants described symptoms persisting for more than a day post stent removal.

Conclusions:

These findings on patients’ experiences during and shortly after ureteral stent removal, particularly the psychological distress they experienced, identify opportunities for improvement in patient care. Clear communication from providers about what to expect with the removal procedure, and the possibility of delayed pain, may help patients adapt to discomfort.

INTRODUCTION

Ureteral stents are commonly used to maintain patency following ureteroscopic treatment of renal or ureteral stones.^1,2 Although studies have shown that indwelling ureteral stents increase post-operative morbidity and negatively impact patients’ quality of life^3,4, less is known about patients’ experiences with stent removal. Existing studies focus on patient preferences for various stent removal methods^5,6 or assess patient perspectives on the removal process via quantitative measures.^7,8 Missing are patients’ voices describing their experiences with stent removal.

We conducted qualitative interviews with patients enrolled in the nested qualitative cohort of the STudy to Enhance uNderstanding of sTent-associated Symptoms (STENTS).⁹ STENTS is a prospective, observational cohort study focused on enhancing understanding of patients’ stent-associated symptoms after ureteroscopy with short-term ureteral stent placement for the treatment of renal or ureteral stones and is part of the NIDDK-funded Urinary Stone Disease Research Network (USDRN). Participants were interviewed about their experiences with having a ureteral stent, including removal. Here we describe participants’ narratives on the ureteral stent removal process and their implications for patient care and future research.

MATERIALS AND METHODS

We conducted a qualitative descriptive study^10,11 using in-depth interviews with adult and adolescent participants in STENTS. All participants had undergone ureteroscopy with stent placement for renal or ureteral stones; the type of stent used, dwell time, and removal method, followed usual clinical practice at each site. Trained qualitative interviewers conducted the interviews by telephone from March 28 to August 8, 2019. Focusing on the stent removal process, we asked participants to reflect on their experiences with (1) aspects of the removal that caused pain, discomfort, or were bothersome, including the type, location, and duration of pain, (2) symptoms experienced immediately after removal, defined as any symptoms experienced on the day of removal, and (3) symptoms experienced in the days following removal, including pain, bleeding, burning with urination, and other symptoms.

Interviews were audio-recorded with participants’ permission, transcribed verbatim following a transcription protocol¹², and analyzed using applied thematic analysis¹³. Two analysts developed and independently applied structural codes¹⁴ (broad categories related to stent removal) to the transcripts, using NVivo (version 12)¹⁵, a qualitative data analysis software program. The analysts then identified content codes representing descriptions of specific participant experiences with stent removal and applied these to the text within each structural code. Inter-coder reliability assessments¹⁶ were conducted on 20% of transcripts at each stage of coding, and where necessary, discrepancies were resolved and codebooks and coding revised before proceeding to the next stage. The analysts then examined narratives within the content codes to identify common experiences among participant responses and wrote analytical summaries, including illustrative quotes, to describe participants’ experiences with the stent removal process and symptoms experienced after removal. Of note, although the most salient participant experiences describe characteristics of cystoscopic stent removal, perspectives of participants with extraction tethers were also included in the analysis.

The protocol was approved by an Institutional Review Board at each participating clinical center. Adult participants provided written consent, adolescents provided assent, and parents of adolescents provided permission.

RESULTS

Study participants

Of the 39 individuals who participated in NQC qualitative interviews, 38 spoke about stent removal. Participants were interviewed an average of 18 days following stent removal (range 7 to 30 days) and represented four geographically dispersed clinical sites. Participants’ ages ranged from 13 to 77 years, 55% (n=21) were female and 95% (n=36) were White (Table 1). Stent removal method varied among participants in accordance with usual clinical practice, such that some stents were removed with an extraction tether (18%, n=7) and others required removal via cystoscope (82%, n=31). Median stent dwell time was 8 days. Many participants stated that they received local anesthesia at the time of removal; no participants described that they were fully sedated.

Table 1.

Participant Demographics

Characteristic	No. (%) n=38
Age
12–17	2 (5)
18–24	3 (8)
25–34	7 (18)
35–44	6 (16)
45–54	8 (21)
55–64	7 (18)
65–74	4 (11)
75+	1 (3)
Sex
Female	21 (55)
Male	17 (45)
Race
Black	2 (5)
White	36 (95)
Hispanic/Latino ethnicity	3 (8)
Education
Less than high school graduate	3 (8)
High school graduate	7 (18)
Some college or associate degree	10 (26)
Bachelor’s degree	14 (37)
Master’s or higher professional degree	4 (11)
Employment status
Unemployed/looking for work	1 (3)
Student	2 (5)
Working part-time	4 (11)
Working full-time	22 (58)
Retired	6 (16)
Stay at home full-time	2 (5)
Permanently disabled	1 (3)
Marital status
Single	13 (34)
Married	18 (47)
Divorced	4 (11)
Widowed	3 (8)
Geographic residence
Mid-Atlantic	6 (16)
Mid-West	10 (26)
South West	11 (29)
Pacific North West	11 (29)
Clinical
Stent dwell time (days)
Median (IQR)	8 (6.5, 11)
Mean (SD)	10.1 (6.8)

Participant experiences with stent removal

Pain and discomfort

Almost all participants (n=31) described experiencing either pain or discomfort at some point during stent removal, with slightly more reporting pain than discomfort. Participants who had pain often described the sensation as “burning” or “sharp,” and those who underwent cystoscopy commonly linked the occurrence of pain to the cystoscope advancing through the urethral sphincter or prostatic urethra. Pain was also reported during removal with a few participants commenting that they could feel the stent moving through their body or felt a “tugging” sensation. Participants who noted that the procedure was uncomfortable but not painful frequently characterized the sensation as “pressure.” Participant narratives highlighted three aspects that caused discomfort: insertion of the cystoscope into the urethra, searching for and grasping the stent within the bladder, and active pulling of the stent. While some participants said that pre-procedural local anesthesia helped to dull pain sensations, a few experienced discomfort related to the numbing procedure itself, describing that insertion of the anesthesia-containing syringe into the urethra was unpleasant and that the lidocaine burned upon application (Table 2, Section 1).

Table 2:

Participants’ symptom experiences

Topic	Participant quote
Section 1: Participant experiences with stent removal
Pain and discomfort	Pain	I definitely felt a lot of pain when they were actually pulling it.
		The next part of the procedure, putting the scope in. And she told me, she said as I was writhing in pain, the nurse kept saying, “Breathe, breathe, you’re going to pass out.” So I mean, that’s how much pain I was in. I was squirming, and the nurse practitioner that was doing the removal said, “Yeah, that’s the prostate.” And then once she got past the prostate, then the pain relieved a little bit.
	Discomfort	No, they had some kind of a numbing thing, that injected-type thing that they did first. I’m sure it helped, but then when they’re going in with it and then they get it into the bladder, there’s that pressure, that discomfort… Then obviously, the pulling out was not the most pleasant thing in the world, but it wasn’t like terrible, screaming pain.
		I felt discomfort. I didn’t – not the word pain. It wasn’t like super painful. It was just uncomfortable. In my bladder. I could feel the like – I guess there’s like a little grasper and she was like grasping with it, and I could feel it inside, and it didn’t feel great. And then, of course, she had a scope in my urethra and up my ureter that also – or it’s like up my urethra into my bladder. So that also was – there was discomfort there. My urethra, yeah.
	Pre-procedure	One, when she put in the gel to numb it. And so when she’s going to put that in, there’s nothing there, so it’s painful when she’s inserting something into the urethra.
		It’s uncomfortable and it burned a little bit when she was – the nurse or the medical assistant – was putting the … I guess it’s the topical anesthesia stuff – the lidocaine or whatever – that they had to put in my urethra, that was uncomfortable.
Nonphysical sources of discomfort	Anxiety	But to be honest with you, it was – being able to look back, it was 90% of the discomfort was mental. …if they told me that they had to do it again, the same thing, it would still freak me out just because it’s just like a very weird strange thing to a very sensitive area. Even though I know… the pain is not going to be there, just the fact that there is going to be a little bit of discomfort, like it’s just more of a mental stressful anxiety-provoking thing for me than the actual pain.
		…the machines are frightening, and yes, you see the long tubes – metal tubes. They look like metal, but they probably are plastic. But you see all the long tubes that they’re going to use. So, other than the sight of the operating room itself, everything else was just great. But I think the equipment, looking at the harsh, pointy equipment… You have to look away because it’s just – brings a – kind of a long, pointed object straight through your personal area.
	Prior expectations	It wasn’t as bad as I expected it to be. I think I definitely built it up in my mind a little bit more than what it was. …I thought it was going to be a longer, painful process where I would feel the stent like essentially moving through my body as they removed it, and, you know, I kind of envisioned how that was going to feel, and it was nothing like I thought it was going to be.
		And then, I was anxious as all get-out for the removal. …just nervous about the – I couldn’t remember – was it just a pinch? Was it just cramping? Or was it really painful? Did I not really think it was painful because I was in so much pain from all the other stuff? And so, I was just nervous as all get-out for that. …I was kind of in my head a little bit because I remembered the last time being pretty miserable, or pretty like – miserable is a stretch because it’s such a short procedure. But being pretty uncomfortable and I had a lot of cramping afterwards that lasted for a couple of days. So, I was nervous about that.
	Medical staff warned about pain	But it wasn’t like that. It was a little bit of pressure and then boom. It’s done. So, I was elated when that happened. Like oh my god, I lost a lot of sleep over nothing. Because the nurse had told me, “Hey it’s like having a baby but not that bad. Having a baby is more painful, right?” She says, “But don’t be a hero. Take your Tylenol.” And so, you know, it’s like damn, it’s going to be that painful? So, I was in a lot of – and I told the doctor, I said, “Man I thought I was going to start screaming and crying in front of you here during this procedure,” but as it turned out, it was not like that. There was a little bit of pressure, but that was the extent of it.
	Did not know what to expect	I couldn’t even sleep the night before, right? Because I had no idea of the procedure. I didn’t have an understanding how that was going to work. And to be quite honest with you, it was not – it was a little bit of pressure that you feel while they’re removing it, but – and I don’t mean to offend you, but I thought they were going to yank my dick off or something. You’re thinking that kind of serious stuff.
	Privacy	Embarrassing. …Just the whole process of being in the stirrups, and being prepped, and that whole thing. …it took a little while for the nurse to come in and set me up, and get me cleaned up, and numb me up a little bit. And then, she stepped out, and she was gone for a little bit, which is, again, kind of uncomfortable just sitting there in the stirrups.
		I didn’t know what to expect. I was going to be having two women look at my penis. That didn’t really thrill me… If it was a man, yes, it would still be awkward, just not as awkward.
Medical providers – positive	Positive interaction	Well, the doctor was so reaffirming then because I didn’t say how fearful I was, but I was, like I said, just because I had a history of seeing a bad stent removal – was enormously reaffirming and positive, and I had a smile on my face by the time it was time to take it out. So, her bedside manner meant a great deal to my comfort.
	Draping	Just even in the tiniest of details. One thing that I really liked was that… the nurse who prepped me for the stent removal, her demeanor was really – she had a great sense of humor, but she was also very straightforward, which I appreciated. But also, beyond that, I liked that they went the extra mile to… When they prep you for the removal and you’re on the table type of thing, they gave extra dressings, like fabrics. So, most of the time, the stereotypical that you’ve got the one lap drape that just kind of hangs over your lap. But they went above and beyond. I had probably four or five. I had one that was kind of over my abdomen, and then both of my legs were completely covered. So, in a way it felt more secure, I guess. Secure is the wrong word, but it felt a little more private where you’re not just like pitching a tent, and oh my gosh. So, I really appreciated that aspect. …Yeah, it kind of felt like you had pants on.
	Communication during procedure	And then, as she was going up with the scope, she gave me a couple warnings, “I’m going to go past this sphincter that controls this, and you’re going to feel that.” …and she got to it and said, “Here it is.” By this time, I was watching it on the video. And so, when she went through that, that was definitely painful. And then she also warned me, “You’ll feel like you have to pee,” which was very strange. But I certainly felt like I had to pee when she did that.
	Viewed procedure/stent – positive	I had her show me, because I had no clue what it was. I actually had her show me the stent, because I was curious of what it looked like, what it was doing. Then I kind of got, “Okay, well, now I know why it was that way – because it has the loops on each end of it.” So that kind of made me think, “Okay, that’s maybe why there was this pressure, this draining thing that was causing the pressure and not maybe flowing like it should normally, coming through.” So that kind of answered some of my questions…
Medical providers – negative	Felt deceived about anesthesia	Well, that was another thing that I felt a little tiny bit deceived… I was told at the doctor’s office that you were going to come in, they give you a little Lidocaine in that area and then it’s removed. And I go in and literally she’s like, “Okay undress from the waist down, he’ll be in in five minutes,” and I’m like “What about the Lidocaine and what do I –?” Because I’d never – the last stent was removed surgically, I was out. …And so, this time I had no idea what to expect. I’m like, “Is it too painful?” And the girl said “Oh it’s not real comfortable, but it’s so fast you’re like oh, that’s it?” …Then she said, “I should give you some Lidocaine, but it really doesn’t work.” And I’m like, “Okay, well then you shouldn’t be telling people when you get your stent removed; you’re going to get Lidocaine and be numbed up. Because that’s deceptive…” …when you go in and you’re already fearful because you’ve never been awake for this kind of thing before, and you’re scared, and then to be told, “Oh no, you don’t get Lidocaine,” or “I could give it to you, but it doesn’t work,” it’s like okay guys, everybody get on the same page. I would rather hear in the beginning, “Yeah, it’s going to be about a minute or so of not feeling the greatest. But then it’s over, done, and no Lidocaine, Lidocaine really doesn’t work,” and [not] thinking I’m going in there and getting something that, oh, I’m not going to feel this at all, and then it’s a whole different story.
	Dehumanizing experience	Taking it out was awful. They were looking on the wrong side for a while, which was no fun. And then when she took it out, she held it up like it was a baby and showed it to me, which was real gross and weird. … Like the whole experience, I felt like I was like a car at Jiffy Lube versus like a patient in a doctor’s office. …it was so impersonal and mechanical… So I mean, I’ve been to like a gynecologist before, and they were like, “Oh, hi, come in.” They try to put you at ease, they’re like, “Put your gown, lay down, you’re going to feel my hand on the inside of your thigh.” Not what it was like at all. It was like, “Lay down here, put this on, spread your legs.” And they’re like spraying stuff on me, that’s the numbing agent, and then they’re like shoving something up. It was just very, like, I don’t know. Except for providing the urethra, I’m not sure that I needed to be there for any of it. …It was very dehumanizing. I didn’t have a good experience. And then they couldn’t find it, and she was digging around in my bladder, which was a very odd and uncomfortable sensation altogether. Until she kind of like found it on the left side, which is where of course it was.
	Viewed procedure/stent – negative	Well, I was awake for the whole time. The device that they removed the stent with is creepy looking, and they had a monitor that showed what was happening and I didn’t want to look at that either. …He had the stent out before I even realized. It’s like, “It’s already out?” He was trying to show it to me and I’m like, “I don’t want to see it. I don’t want to know. I don’t want to know that it exists anymore.”
Section 2: Symptoms immediately following removal
Speed of removal	…the way it goes is that, “Okay, this is going to take two seconds,” she said. One, two, she found it, three seconds to pull it out.
	Taking it out was somewhat painful but again, it’s just like a few seconds. …And then it’s out. So, you’re like, “I feel great now. Thank you.”
Symptom relief	Complete and lasting	Well, it hurt like the devil during the removal, and then it felt better almost immediately. …it was done in a snap, like three seconds maybe, and I had this huge ouch, and then, “Ah, so much better. Yay!” …even walking to my ride, I kept thinking, “It’s going to start hurting here any second.” It never did.
	Incomplete	This last one, I do feel like I had just a little bit of pain, nothing crazy, and I definitely was just like relieved that the stent was out. So, overall, I was feeling great. But I do remember taking a couple of the prescription ibuprofen, strong pills, maybe like two of those pills in 48 hours. But just the fact that I did reach for those, there was still a little bit of pain there.
	Temporary	I went to work and I felt great… I felt really great for the first hour… I work with kids – so I’m all over the place walking, crouching, all kinds of things. So, the first hour was great. I felt perfect, feeling very optimistic. And then the second patient, second hour, about halfway through… I just was overcome with sudden onset of 9 or 10 out of 10 pain, just crazy uncomfortable and I actually had to go return my patient to his mom and I just went to my desk and I was like, “I have to leave. I have to get out of here.” It just kind of hit me like a sudden bout of just the strongest pain I’ve felt – very similar to when I’ve had kidney stones in the past that were symptomatic.
Pain	So in comparison to the very worst pain that I felt with the kidney stones, the only period was after the stent removal. I would categorize that cramping period, the night after the stent removal – a couple of hours after – I would categorize that as bad as the – really the worst days.
	They warned me about it, but they said 45 minutes to an hour after I got the stent out, they said it would be a pain that felt like another kidney stone, but it would last 15 minutes or less. They were right. It hit at about the hour mark and it lasted for about 15 minutes, and it sucked. After that, it wasn’t too bad.
Bleeding	Maybe some blood in my urine, just for about you know, a couple of times. …The second time I urinated after that, there was like a glob of bloody stuff. But then after that, it was pretty regular.
Burning with urination	I think there was a little bit of burning when I went to the bathroom, and that’s about it.
Urinary urgency	I would say the first day I got the stent removed it was kind of like, “Oh, like I have to go to the bathroom right now” just because it was different feeling, but then after that I was back to normal.
	After the stent was removed, just that feeling that I was – I felt like I was going to pee. In other words, as I got up and got dressed, and I was walking out, I felt like if I coughed or sneezed, that I would probably end up peeing on myself. Because it just had that sensation. … And again, that resolved in probably 30 minutes.
Urinary frequency	And then, again, it kind of – the frequency and the urge definitely got better the farther away I got from that. I think for the first day it might have been more frequent than usual.
Other symptoms	So, I would say it really didn’t go away until the stent was – and it probably took a couple days after the stent was taken out that I kind of felt like there wasn’t something in there that shouldn’t be in there.
Section 3: Symptoms in the days after removal
Lingering symptoms	I still had a little bit of blood in my urine, and I still had a little bit of pain when I urinated, but I think that was probably just from the irritation of having the stent in. Now, when the stent’s out, there’s going to be irritation for a couple days…it was probably about three days…it tapered off. And I just figured that meant my body was getting used to not having it and going into normal body mode.
Pain	Every night, from probably 1:30 a.m. until 4:30 a.m., I had really bad discomfort in my urethra. And, that happened through Saturday afternoon. So, Tuesday night – I guess it would be Wednesday night, from 1:30 a.m. in the morning, until 4:00 a.m., or 5:00 a.m., really bad irritation in my urethra, just out of nowhere. Same thing Thursday, and same thing Friday. And, then, Saturday afternoon I had it, and that was it. I haven’t had anything since Saturday afternoon.
	Maybe two weeks after I had the stent out – like it just stopped happening a couple of days ago – if I would eat like a big meal or if I had to use the bathroom or something or anything that happened internally would just restart sort of like the soreness pain. I don’t know if that’s because things are still sore or I just had my period this week, so anytime there was cramps there it was also cramping up more in the kidney area. Not so much that when I had [the stent in], but enough that it was something.
Urinary urgency	Now, I will tell you, still to this day I’m still having some of the— not the frequency as much as the urgency. It’s not nearly as bad as it was with the stent, but it is definitely something I’ve noticed, and it’s a little worse than it was before the whole thing. So, I don’t know if that’s just retraining myself with two weeks of wetting yourself all the time and you’ve got to retrain every – lots of stuff, but I don’t know.

Psychological responses

Many participants (n=21) described anxiety related to stent removal, commenting that they were “scared,” “afraid,” “fearful,” “nervous,” “anxious,” and “worried” about the procedure. Most shared being worried about the prospect of pain, although some participants elaborated that feelings of anxiety were also triggered by aspects of the medical setting, such as the sight of the removal equipment, or being awake and able to view the procedure on a monitor. Participants explained that prior expectations about stent removal influenced their feelings leading up to the procedure, with some expressing a general sense that removal would be unpleasant or “bad;” in some cases, participants expressed that previous experiences with stent removal or discussions with others ahead of time left them with the impression that stent removal would be a negative experience. Comments by medical personnel warning about the possibility of pain also contributed to this impression for a few participants; yet some participants who had not been informed about what to expect described that a lack of knowledge about the procedure led to misconceptions and further increased their anticipatory anxiety.

Eleven participants, all of whom underwent cystoscopy for stent removal, discussed discomfort arising from lack of privacy, embarrassment, or feeling exposed. Participants said that having their feet up in stirrups made them uncomfortable, particularly when they were left to wait in that position for several minutes while the anesthesia took effect, as did having their genitals cleaned and wiped with antiseptic. A small number of participants also commented that having opposite-gender medical personnel involved with the stent removal process was discomfiting (Table 2, Section 1).

Medical personnel interactions

Numerous participants (n=16) remarked on aspects of medical providers’ demeanor during the stent removal process, describing actions and comments that they found helpful or that, conversely, made them uncomfortable. Some participants who said they were nervous about the procedure commented that the way providers interacted with them prior to and during stent removal helped put them at ease. For example, participants described that clinic staff took extra care with draping to help them feel less exposed, and that providers communicated with them during the procedure, informing them of what was about to occur and coaching them on how they could relax their muscles to help the process. Several participants also appreciated being given the opportunity to watch the stent removal on a monitor or see the stent after it was removed, stating that they found this interesting and informative.

However, a few participants said they did not have a good experience with one or more members of the medical team. These participants largely felt that they had been deceived about aspects of the stent removal process, for example, about the amount of pain they would experience during the procedure or the type of anesthesia that would be available to them; one participant, who had not previously met the provider who performed the stent removal, described the experience as “dehumanizing.” Contrasting participants’ comments above, some participants said they felt uncomfortable when watching the stent removal or being shown the stent, noting that they would have appreciated being warned of what they were about to see (Table 2, Section 1).

Symptoms the day of removal

For most participants, any pain or discomfort experienced during stent removal was of short duration, as a majority of participants who spoke about speed of removal commented that the procedure was “quick and easy” (n=25), lasting from only a few seconds to under 5 minutes, and over half of participants described that they experienced immediate symptom relief. For some, relief was complete and lasting, while others noted incomplete or partial relief, with some symptoms improved but others, such as urinary urgency or pain, persisting for a day or more following removal. A few experienced immediate but temporary relief, reporting pain that subsided immediately upon stent removal, but returned within the first hour after the procedure.

A third of participants stated that they experienced pain on the day of stent removal, most commonly describing the sensation as “cramps” or “spasms” that were often located in the kidneys, back, or urethra. More than half of participants with pain indicated that it lasted less than 4 hours, but for a third of participants who reported post-removal pain, the sensation lingered between 24 and 48 hours. Of participants who described pain intensity, almost all stated that it was greater than or equal to the pain produced by the kidney stone, with the majority commenting that the pain was severe. High levels of post-removal pain also caused functional impacts, rendering participants temporarily unable to work, needing to lie down, and unable to get comfortable; a small number of participants said they went to or considered going to the emergency room. Participants who reached medical providers were told that their experience was an expected reaction to the procedure; in one case, a participant reported that the provider who performed the stent removal had predicted the timing and intensity of the participant’s post-removal pain experience almost exactly.

About a quarter of participants reported having bleeding and burning with urination on the day of stent removal. Most participants said these symptoms were mild, with bleeding lasting for only the first few voids after stent removal, or bleeding less severe than with the indwelling stent. Burning with urination largely subsided on the first day, with most participants who experienced burning noting that it occurred only for the first 1 to 3 voids after stent removal and was not bothersome. Several participants also described increases in urinary urgency, and a few described urinary frequency immediately after stent removal, which both resolved within the first day for the majority of participants; urinary urgency was primarily reported in the first minutes after the stent was removed. New symptoms also emerged for a few participants following stent removal, including fatigue, a temporary inability to pass urine, and a “phantom” sensation, as if the stent were still indwelling (Table 2, Section 2).

Symptoms in the days after removal

While a majority of participants experienced complete symptom relief within a day of stent removal, a third of participants reported that they were not entirely free from symptoms for 2 to 3 days to as long as 2 weeks following removal. Lingering symptoms included pain and discomfort, blood in the urine, and urinary urgency.

All participants with persistent symptoms in the days following stent removal described experiencing some type of pain. The majority reported feeling “discomfort” or a “dull ache;” however, a few described that their pain was severe, noting that they experienced cramps, spasms, or even pain similar to that of a kidney stone. These participants experienced functional impacts due to pain following stent removal, including inability to work and impaired sleep. Lingering pain was primarily described as being located in the bladder, flank, and kidneys and was most commonly experienced for 1 to 5 days after stent removal, gradually diminishing over time. A few participants, however, noted that their pain sensations lasted for a week or more. Pain was often described as episodic rather than constant and sometimes appeared to be triggered by movement or certain food and drink items. A few participants also saw blood in their urine over a multi-day period, although the amount was described as minimal, while others commented on lingering issues with urinary urgency and frequency (Table 2, Section 3).

DISCUSSION

To our knowledge, this is the first qualitative study to explore participant experiences with cystoscopic removal of a post-ureteroscopy ureteral stent. Our findings provide granular descriptions of participant experiences with pain related to stent removal, and importantly, reveal novel insights into these participants’ psychological distress. Specifically, participant narratives revealed feelings of anxiety prior to stent removal, as well as discomfort due to lack of privacy, embarrassment, or feeling exposed. Interactions with medical personal during the removal process were described as mitigating or exacerbating psychological distress; participants with lingering pain symptoms found them alarming and harmful to their quality of life. These findings give voice to patient concerns about the procedure in ways that are detailed, specific, and actionable.

Our findings complement reports of pain during the stent removal procedure as well as procedure-associated anxiety documented with other cystoscopic procedures. Loh-Doyle and colleagues surveyed patient experiences and preferences for ureteral stent removal via an anonymous web-based instrument (kidneystoners.org) with 571 participants and reported that 57% had moderate to severe pain levels of 4 or more out of 10 during stent removal,⁸ though the time between stent removal and survey response in this convenience sample was not reported. Other studies comparing stent removal pain via cystoscopy versus string removal reported that total mean visual analog scale (VAS) pain scores were higher for patients undergoing cystoscopy.^5–7 In one of these studies, VAS scores were 5.67 out of 10 for the cystoscopy group and 2.73 for patients undergoing string removal.⁶ Lingering or delayed pain among patients following stent removal, like that reported by the interview participants, has also been demonstrated,^8,17–19. Post-removal, pain has also been documented in 38%¹⁸ to 55%¹⁹ of patients and is sometimes of sufficient severity to cause patients to seek emergency medical treatment⁸. A recent randomized trial supports use of ketorolac to reduce pain and emergency department visits following stent removal.²⁰

Kukreja and colleagues reported that among bladder cancer survivors who experienced moderate to severe discomfort with diagnostic cystoscopy, 78% considered procedure-associated anxiety to be a problem (though unable to differentiate procedure- and cancer-related anxiety),²¹ while Biardeau and colleagues found that 58% of patients who had office-based diagnostic cystoscopy reported some degree of anxiety prior to cystoscopy, and 22% experienced embarrassment.²²

While practicing urologists may be familiar with patient anxiety during stent removal, our findings also shed light on opportunities for improving provider communication about the ureteral stent removal process and its aftermath. The survey by Loh-Doyle and colleagues revealed that patients placed high priority on being informed about the stent removal process, rating it at 4.6 on a scale of 1 to 5, with 5 being “very important,” and Kukreja and colleagues described that many patients were interested in being involved with medical planning to reduce cystoscopy discomfort. In our interviews, some participants described that knowing what to expect during the procedure helped them to feel less anxious. Likewise, some participants in our research reported that lack of clarity or mixed messaging about the procedure led them to imagine worst-case scenarios prior to undergoing the procedure and elevated their pre-procedural worry and anxiety.

Biardeau and colleagues summarize guidance on optimal pre-procedural counseling and suggest that providers should consider the vocabulary used, avoid pain-related words,^23,24, emphasize clarity over volume of information,²⁵ and make use of standard written materials for educating patients.²⁶ They further propose that for procedures involving only local anesthesia, providers should communicate with patients while the procedure is underway;²⁷ indeed, several of the participants in our study remarked that providers’ communication helped put them at ease during stent removal. Counseling patients about the possibility of pain following stent removal may also be helpful;⁸ in their clinical practice, Theckumparampil and colleagues routinely engage in preoperative counseling about post-stent removal symptoms, including reassurance that most patients are able to return to baseline activity levels by the day following stent removal.¹⁸ Based on our interview data, we propose potential topics for provider messaging that may be helpful in setting patient expectations for ureteral stent removal (Table 3).

Table 3.

Potential messaging topics for providers to guide patient expectations for ureteral stent removal

Pre-procedure

Learn to recognize signs of patient anxiety and provide additional reassurance to these patients Clearly explain whether and how anesthesia will be used to make the patient comfortable Consider utilizing additional draping and orienting room so patients feel less exposed Ask patients: Are you comfortable with opposite-gender staff being present during the stent removal, or would you prefer same-gender staff only? Do you want to watch the removal procedure on a monitor? Do you want to see the stent once it is removed?

During the procedure

Communicate with patients during parts of the procedure where they may temporarily experience pain or urinary urgency Coach patients on how they can help (e.g., deep breathing, muscle relaxation)

Post-procedure

Explain that it is normal to experience short-term pain after stent removal Explain that it is normal to temporarily experience other symptoms such as blood in urine or urinary urgency after stent removal Provide a time frame after which symptoms usually resolve

Lastly, our findings suggest an important unmet clinical and research need for patient-reported experience measures (PREMs) for stent removal, concomitant with efforts to reduce psychological distress. PREMs reflect perceptions of the experience of care, and provide information helpful for improving patient experience, which is an indicator of quality. Systematic assessment of patient experience with stent removal and structured effort to reduce psychological distress may help to mitigate the burdens of stone treatment.

Our study has both strengths and limitations. By conducting interviews within 30 days of stent removal, we were able to limit recall bias. Further, the geographic diversity of our sample enabled us to capture variations in clinical practice that may occur between centers, thus reflecting commonalities in patient experience. Limitations include the purposeful selection process such that a different group of participants may have recounted different experiences as well as the limited racial and ethnic diversity of the study population. Daily symptom scores following ureteroscopy with stent have been reported for this nested cohort,²⁸ and are similar in the entire STENTS cohort.²⁹ The perspectives primarily pertain to stent removal by cystoscopy, and may be less salient to removal without cystoscopy (e.g., by tether). In this observational study, practices such as pre-cystoscopy counseling were not standardized across the study, in order to gain insights from practice variation. In addition, we lack granular procedural data for the stent removal (e.g., lidocaine use); many of the patient-reported impacts, such as lack of privacy and psychological stress, would not be impacted by these clinical factors.

However, our findings, particularly relative to the occurrence of post-stent pain, are reflective of other published studies on stent removal.

CONCLUSION

Our findings revealed that participants not only experience pain and physical discomfort with the removal of post-ureteroscopy ureteral stents but also psychological distress, and some experience lingering pain or urinary symptoms, described qualitatively herein and quantified by daily symptom measurement.²⁸ Urologists may be able to mitigate psychological discomfort during the stent removal procedure through education and communication, with particular focus on topics that may reduce anticipatory anxiety and manage expectations for the process, including symptomatology following stent removal. Development of PREMs and systematic efforts to improve the stent removal experience appear indicated.