Impact of clean intermittent catheterization on quality of life of patients with neurogenic lower urinary tract dysfunction due to radical hysterectomy: A cross‐sectional study

Abstract

Aims

We investigated the quality of life (QOL) of a homogenous group of ambulant patients with neurogenic lower urinary tract dysfunction without significant comorbidities to elucidate the impact of clean intermittent catheterization (CIC) on QOL.

Methods

The subjects were 71 female patients who underwent radical hysterectomy (RH) without recurrent disease. QOL was cross‐sectionally measured with the Short‐Form 36‐Item Health Survey (SF‐36) and King's Health Questionnaire (KHQ). We divided urinary management into spontaneous voiding (SV) and CIC as well as postoperative elapsed time into the entire period, less than 24 months (<24 months) and 24 months or more (≥24 months).

Results

Patients with CIC showed significantly poorer QOL than patients with SV in some subscale/domain scores on SF‐36 and KHQ for the entire period as well as <24 months after RH. In contrast, significant differences were not revealed between scores on both measures of patients with CIC and SV ≥24 months after RH. Moreover, in patients with CIC ≥24 months, some subscale/domain scores on both measures were significantly better than in those with <24 months. Norm‐based scoring of SF‐36 revealed that all subscales of patients with CIC <24 months were below the average score of healthy Japanese people, while only four subscales of those ≥24 months remained below the average.

Conclusions

QOL in patients with CIC was worse than in patients with SV in the short term, but similar in the long term, which suggests that QOL probably might improve with time in patients with CIC.

1 INTRODUCTION

Clean intermittent catheterization (CIC) is a standard procedure for patients with neurogenic lower urinary tract dysfunction (NLUTD) who are unable to void spontaneously.^{1, 2} While the efficacy and safety of CIC have been frequently reported,^{3, 4} there have been few reports regarding differences in quality of life (QOL) between CIC and spontaneous voiding (SV) in patients with NLUTD, except patients with spinal cord injury (SCI).^5-11 Patients' QOL after SCI is profoundly affected not only by urinary management but also by disability due to the injury itself.^7-10 Therefore, in order to understand whether the QOL is reduced by underlying disease or is a result of urinary management, it is essential to exclude those participants with significant disabilities to attain a homogenous study population.⁸ In this regard, possible candidates are patients whose NLUTD is due to peripheral nervous injury distal to the pelvic plexus during radical pelvic surgery, such as radical hysterectomy (RH), to control cancer, and are free from postoperative complications.

Although nerve‐sparing procedures have become common, RH for uterine cervical cancer is one of the major causes of infrasacral NLUTD.^{12, 13} In Japan, surgical treatment is chosen at a high rate as the primary treatment for early‐stage cervical cancer due to the high cure rate by the time‐honored Okabayashi RH with functional preservation being improved by various technical modifications.¹⁴ A recent Japanese multicenter study demonstrated that 5‐year disease‐free survival rates among disease stage IB1‐IIB patients reached approximately 80% or more.¹⁵ Therefore, postoperative QOL as well as cancer control after RH is of paramount importance for survivors.

To the best of our knowledge, it has not been determined whether QOL significantly differs between patients with SV and those with CIC after RH. Among patients with SCI, Crescenze et al demonstrated that women continue to be highly dissatisfied with CIC and that female gender is an independent predictive factor for dissatisfaction with CIC along with a more recent injury, recurrent urinary tract infection (UTI), and bowel dysfunction.⁹ Therefore, in the present study, we targeted a relatively homogenous group of female patients with NLUTD and investigated the short‐ and long‐term impacts of CIC on QOL.

2 MATERIALS AND METHODS

2.1 Patients

This study was approved by the Clinical Research Ethics Committee at our institution and was conducted according to the 1964 Helsinki Declaration with its later amendments and complete ethical standards. The subjects were 71 of 77 ambulant female patients who underwent modified Okabayashi RH for localized cervical cancer between September 1997 and August 2011, were referred to our NLUTD clinic because they needed CIC at discharge from the hospital, and were followed up at an NLUTD clinic. These 71 patients did not have recurrent disease or significant comorbidities, such as neurologic diseases, previous pelvic surgeries, previous lower urinary tract, as well as pelvic floor disorders, and agreed to answer QOL questionnaires. Patients who were undergoing adjuvant therapy (3) or significant therapeutic complications requiring interventions, such as symptomatic pelvic lymphocele (1), lymphedema (1), and ureteral stricture (1), were not included.

2.2 Urinary management

Urinary management for patients after RH at our institution was previously reported¹³ but is briefly described here. Bladder expression to facilitate emptying the bladder as a substitute for voluntary voiding after removal of an indwelling urethral catheter is not recommended because it increases bladder pressure, risk of vesicoureteral reflux, and pressure propagation to the kidneys and pelvic floor, potentially resulting in long‐term renal and pelvic floor damage. Therefore, CIC is substituted for bladder expression in our hospital when patients are unable to void without the aid of a forceful Valsalva maneuver after removal of the catheter. As a rule, CIC was also introduced to patients with significant residual urine volume (>100 mL) despite voluntary voiding as well as urinary retention. After discharge, all the patients who needed CIC at discharge were regularly managed at the NLUTD clinic. A neuro‐urologist and nurses thoroughly instructed patients about the pathophysiology of NLUTD and the need for urinary management to be performed. Because lower urinary tract function is usually recovered around 12 months after radical pelvic surgery,¹⁶ a urodynamic study was performed at that time. If sufficient detrusor contraction was present or if sufficient detrusor contraction was not demonstrated but a continuous flow pattern was evident on at least three consecutive uroflowmetries, CIC was gradually stopped. On the other hand, if detrusor contraction was not demonstrated and an intermittent flow pattern with a poor flow remained unchanged on repeated uroflowmetries, CIC was continued. Our protocol of withdrawal of CIC is shown below. Patients were instructed to perform CIC immediately after voiding and to describe frequency‐volume charts. If the residual urine volume was <100 mL each time, the frequency of CIC was reduced one by one. We checked findings of the charts and uroflowmetry at the monthly visit. If CIC was performed only once a day with a residual urine volume <100 mL and uroflowmetry showed a continuous curve with a maximum uroflow rate more than 10 mL/s, CIC was ceased. Thereafter, patients were regularly followed up with uroflowmetry. Twelve patients were able to discontinue performing CIC along the protocol before the planned urodynamic study because the patients could spontaneously void without bladder expression, and uroflowmetries showed continuous curves with good flow rate. Therefore, these patients did not undergo the urodynamic study.

2.3 Evaluation of QOL

QOL was cross‐sectionally measured with the Japanese version of the Short‐Form 36‐Item Health Survey (SF‐36)¹⁷ as well as the King's Health Questionnaire (KHQ)¹⁸ at their regular visits to the clinic. The SF‐36 survey comprises 36 questions, is organized into eight subscales that can be transformed, and scores range from 0 to 100. A higher score represents a better health status. In addition, the physical component score (PCS) and mental component score (MCS) can be calculated from the eight subscales. The KHQ consists of 21 questions, which can specifically reflect the effect of urinary problems on a patient's QOL. Each domain score is also transformed onto a scale from 0 to 100, but unlike the SF‐36, a higher score on the KHQ indicates a worse QOL. Caution should be exercised in interpreting the incontinence impact domain because the question of this domain (“How much do you think your bladder problem affects your life?”) is associated with not only incontinence but also other storage and voiding dysfunctions.

First, we compared each subscale/domain scores of the QOL questionnaires of patients with CIC to those of patients with SV for the entire period. Then, we divided the postoperative elapsed time into two periods, that is, less than 24 months (<24 months) and 24 months or more (≥24 months), and compared the QOL of patients with SV and CIC in separate time periods for the following reasons. While managing patients in the NLUTD clinic, we noticed that few patients changed their urinary management after the second year, and we had the impression that it would take at least 2 years for patients to accept CIC as a lifelong requirement for urinary management. In fact, only four patients stopped CIC after 24 months in the present study. In addition, we compared each subscale/domain score < 24 months after RH with that of ≥24 months after RH between each urinary management group. Finally, a norm‐based score of the patient was calculated and compared with the average score of the Japanese population, which was defined as 50 points.¹⁹

2.4 Statistical analysis

The data were analyzed using JMP version 15.0.0 (SAS Institute Japan Ltd, Tokyo, Japan). For descriptive purposes, the data were presented as means with standard deviations (SD) for the results of the SF‐36 and KHQ. After the test of normality by the Shapiro‐Wilk test and Anderson‐Darling test, we performed Student's t test and Wilcoxon rank sum test for scores of each subscale/domain when the data were normally and non‐normally distributed, respectively, and a chi‐square test for categorical variables. P < .05 was considered statistically significant.

3 RESULTS

3.1 Patients' characteristics

All the patients needed CIC at discharge and were regularly managed at the NLUTD clinic. Patients' characteristics for each group are shown in Table 1; there were no significant differences in patients' characteristics between patients with SV and those with CIC by time period. All the patients with CIC performed CIC themselves. In patients with SV, the duration of CIC was 16.4 ± 7.2 months (median: 15.5 months [interquartile range: 11.25, 24.25 months]) after RH. The main reason why patients with SV visited the NLUTD clinic was that they needed a periodical evaluation with uroflowmetry and postvoid residual urine volume due to incomplete recovery of the emptying dysfunction, although they were able to cease CIC. CIC was not reinitiated in any of the patients with SV and was continued in all the patients with CIC during the follow‐up period.

TABLE 1. Patient characteristics

	Entire period		P	<24 months		P	≥24 months		P
	SV	CIC		SV	CIC		SV	CIC
n	21	50		9	11		12	39
Age at RH (years)	42.7 ± 10.1	44.7 ± 10.6	.4558^aa Student's t test.	41.3 ± 10.2	44.4 ± 8.7	.4641^aa Student's t test.	43.8 ± 10.3	44.8 ± 11.2	.7749^aa Student's t test.
Age at QOL evaluation (years)	47.0 ± 11.7	49.3 ± 11.9	.4510^aa Student's t test.	42.6 ± 10.4	45.4 ± 8.7	.5233^aa Student's t test.	50.2 ± 11.9	50.4 ± 12.6	.9640^aa Student's t test.
Months after RH	51.7 ± 71.5	55.4 ± 42.7	.1014^bb Wilcoxon rank sum test.	16.7 ± 6.0	12.2 ± 4.6	.0737^aa Student's t test.	78.0 ± 86.6	67.6 ± 40.6	.3396^bb Wilcoxon rank sum test.
Stage			.1719			.7320			.0689
IB	12	37		5	8		7	29
IIA	3	2		1	1		2	1
IIB	6	10		3	2		3	8
III		1						1
Adjuvant radiotherapy (%)	13 (62)	24 (48)	.2844	7 (78)	6 (55)	.2785	6 (50)	18 (46)	.8154
Urinary incontinence (%)	5 (24)	11 (22)	.8677	1 (11)	1 (9)	.8809	4 (33)	10 (26)	.6016
Comorbidities			^cc Due to the small numbers of each comorbidity, we did not perform statistical analysis for comorbidities.			^cc Due to the small numbers of each comorbidity, we did not perform statistical analysis for comorbidities.			^cc Due to the small numbers of each comorbidity, we did not perform statistical analysis for comorbidities.
Diabetes mellitus	1	1					1	1
Hypoparathyroidism		1						1
Lumbar spondylosis		1						1

• Note: Data are shown as mean ± SD.
• Abbreviations: CIC, clean intermittent catheterization; QOL, quality of life; RH, radical hysterectomy; SV, spontaneous voiding.
• a Student's t test.
• b Wilcoxon rank sum test.
• c Due to the small numbers of each comorbidity, we did not perform statistical analysis for comorbidities.

3.2 Evaluation of QOL

We were able to analyze SF‐36 in all 71 patients, but KHQ in 63 patients due to inadequate responses. Means with SD of scores of each subscale/domain on the SF‐36 and KHQ in relation to time since RH are shown in Tables 2 and 3, respectively, while radar charts of them are shown in Figure 1. For the entire period, the MCS on SF‐36 and incontinence impact domain scores on KHQ were significantly worse in patients with CIC than in patients with SV. In addition, general health (GH, P = .0665) and social functioning (SF, P = .0921) subscale scores on the SF‐36 as well as role limitations (P = .0877) and social limitations (P = .0629) domain scores on the KHQ tended to be worse in patients with CIC. The scores of each subscale/domain on SF‐36 and KHQ in patients with SV and CIC did not show significant differences between patients with and without radiotherapy (data are not shown), while scores of the severity measures domain on KHQ showed statistical differences between patients with and without urinary incontinence (38.33 ± 20.64 vs 9.74 ± 9.67 [P = .0114] in patients with SV and 30.37 ± 19.75 vs 16.00 ± 20.16 [P = .0422] in patients with CIC, respectively, by Wilcoxon rank sum test).

TABLE 2. Subscale scores on the Short‐Form 36‐Item Health Survey

	Physical functioning	Role physical	Bodily pain	General health	Vitality	Social functioning	Role emotional	Mental health	PCS	MCS
Entire period
SV (n = 21)	85.36 ± 13.52	84.82 ± 20.40	75.81 ± 20.47	63.00 ± 13.66	67.86 ± 14.15	90.48 ± 16.25	88.88 ± 16.94	79.23 ± 15.31	46.60 ± 9.66	54.43 ± 6.76
CIC (n = 50)	85.70 ± 17.10	79.63 ± 26.24	74.45 ± 22.46	55.84 ± 15.20	61.63 ± 18.21	83.00 ± 19.84	81.67 ± 25.37	72.15 ± 18.86	45.26 ± 13.70	50.06 ± 8.97
P	.5835	.5904	1.0000	.0665*	.1664*	.0921	.3136	.1330*	.8649	.0492*
<24 months
SV (n = 9)	85.28 ± 14.28	77.08 ± 24.61	75.56 ± 24.82	62.32 ± 14.95	65.97 ± 12.15	88.89 ± 17.05	85.19 ± 18.99	76.67 ± 18.20	44.38 ± 12.05	54.18 ± 7.20
CIC (n = 11)	85.91 ± 11.24	72.73 ± 30.91	72.18 ± 17.26	47.91 ± 13.42*	56.82 ± 22.61	69.32 ± 21.19*	72.72 ± 29.37	63.18 ± 24.42	43.22 ± 13.15	45.95 ± 9.85
P	.9373	.8772	.8771	.0355*	.2657	.0438	.2864	.1871*	.9394	.0482
≥24 months
SV (n = 12)	85.42 ± 13.56	90.63 ± 15.19	76.00 ± 17.70	63.50 ± 13.27	69.27 ± 15.87	91.67 ± 16.28	91.67 ± 15.49	81.15 ± 13.27	48.27 ± 7.55	54.62 ± 6.74
CIC (n = 39)	85.64 ± 18.56	81.57 ± 24.87	75.11 ± 23.92	58.08 ± 15.07	62.98 ± 16.87	86.86 ± 17.90	84.19 ± 23.94	74.68 ± 16.48	45.84 ± 13.97	51.22 ± 8.48
P	.5248	.3911	.8709	.2411	.2481	.2885	.4255	.2981	.5681*	.2109*
<24 vs ≥24 months
P, between SV patients	.9241	.1942	.9710	.6411	.4901	.6877	.4633	.6665	.6411	.8869*
P, between CIC patients	.4207	.2833	.5660	.0231	.3340	.0115	.1115	.1830	.3992	.0856*

• Note: Data are shown as mean ± SD. P values were calculated by Wilcoxon rank sum test except the P values with a superscript (*), for which Student's t test was used. Missing data: n = 1 in physical functioning and n = 1 in bodily pain in patients with CIC ≥ 24 months.
• Abbreviations: CIC, clean intermittent catheterization; MCS, mental component score; PCS, physical component score; SV, spontaneous voiding.

TABLE 3. Domain scores on King's Health Questionnaire

	General health perception	Incontinence impact	Role limitations	Physical limitations	Social limitations	Personal relationships	Emotions	Sleep/energy	Severity measures
Entire period
SV (n = 19)	34.21 ± 17.10	22.81 ± 19.41	13.16 ± 16.27	21.05 ± 23.47	5.85 ± 9.35	6.86 ± 11.87	23.46 ± 17.83	25.00 ± 15.39	15.56 ± 17.41
CIC (n = 44)	36.93 ± 19.05	37.88 ± 23.40	22.76 ± 21.65	25.00 ± 26.29	15.40 ± 20.36	10.29 ± 14.80	33.33 ± 26.39	34.62 ± 25.76	19.32 ± 20.73
P	.6712	.0167	.0877	.5957	.0629	.4726	.2908	.2178	.6701
<24 months
SV (n = 9)	30.56 ± 16.67	22.22 ± 23.57	16.67 ± 18.63	24.07 ± 25.15	6.17 ± 9.80	6.25 ± 12.40	29.63 ± 18.43	27.78 ± 18.63	11.11 ± 12.02
CIC (n = 10)	47.50 ± 14.19	56.67 ± 27.44	31.67 ± 22.84	40.00 ± 31.62	24.44 ± 30.00	15.00 ± 14.59	50.00 ± 34.05	43.33 ± 23.83	28.00 ± 24.91
P	.0365	.0146	.1508	.2258	.1061	.1824	.1945	.1286	.0869
≥24 months
SV (n = 10)	37.50 ± 17.68	23.33 ± 16.10	10.00 ± 14.05	18.33 ± 22.84	5.56 ± 9.44	7.41 ± 12.11	17.28 ± 15.82	22.22 ± 11.79	20.00 ± 21.34
CIC (n = 34)	33.82 ± 19.35	32.35 ± 19.22	19.89 ± 20.83	20.59 ± 23.23	12.75 ± 16.21	8.33 ± 14.74	27.78 ± 21.19	31.61 ± 26.10	16.32 ± 18.65
P	.4753	.1947	.1515	.7666	.2172	.9602	.2507	.5166	.5165
<24 vs ≥24 months
P, between SV patients	.3438	.8146	.4483	.5792	.9206	.8104	.1991	.8443	.4443
P, between CIC patients	.0375	.0094	.0663	.0580	.3084	.1448	.0498	.1581	.0925

• Note: P values were calculated by Wilcoxon rank sum test. Missing data: n = 3 in role limitations in patients with CIC ≥ 24 months, n = 1 and 10 in personal relationships, n = 1 and 4 in emotions, n = 1 and 5 in sleep/energy, and n = 1 and 5 in severity measures in patients with SV and CIC ≥24 months, respectively.
• Abbreviations: CIC, clean intermittent catheterization; SV, spontaneous voiding.

FIGURE 1

Radar charts of the patients after radical hysterectomy. A. Short‐Form 36‐Item Health Survey <24 months; B. King's Health Questionnaire <24 months; C. Short‐Form 36‐Item Health Survey ≥24 months; D. King's Health Questionnaire ≥24 months. SV, spontaneous voiding; CIC, clean intermittent catheterization. *P < .05, vs SV < 24 months; **P < .05, vs SV ≥ 24 months; ***P < .05, vs CIC < 24 months

Less than 24 months after RH, GH and SF subscale scores and MCS on the SF‐36, and general health perceptions and incontinence impact domain scores on the KHQ were significantly worse in patients with CIC than in patients with SV. In addition, social limitations (P = .1061) and severity measures (P = .0869) domain scores on the KHQ tended to be worse in patients with CIC. Twenty‐four months or more after RH, significant differences were not revealed between patients with CIC and those with SV by scores of each subscale/domain on both the SF‐36 and KHQ. In patients with CIC, GH and SF subscale scores on the SF‐36 were significantly better in patients ≥24 months than in patients <24 months, while MCS (P = .0856) tended to be better in patients ≥24 months. Moreover, general health perception, incontinence impact, and emotions domain scores on KHQ were significantly better in patients ≥24 months than in patients <24 months, while role limitations (P = .0663), physical limitations (P = .0580), and severity measures (P = .0925) tended to be better in patients ≥24 months. On the other hand, no subscale/domain on both the SF‐36 and KHQ demonstrated significant differences between the groups of patients with SV.

The norm‐based scores of patients with SV and CIC are demonstrated in Figure 2. In patients with SV < 24 months after RH, the norm‐based score revealed that physical functioning (PF), role physical (RP), and role emotional (RE) were below the average score of healthy Japanese people. On the other hand, only PF in patients with SV ≥24 months after RH was below the average. In patients with CIC < 24 months after RH, QOL was much worse than in healthy Japanese people because all the subscales were below the average. However, QOL was improved with time although PF, RP, GH, and RE remained below the average in patients with CIC ≥24 months after RH.

FIGURE 2

Norm‐based scoring of the Short‐Form 36‐Item Health Survey. Fifty points (red line) indicate the average score of healthy Japanese people. SV, spontaneous voiding; CIC, clean intermittent catheterization

4 DISCUSSION

It has not been determined whether QOL in patients with NLUTD requiring CIC is different by underlying disease, such as between RH and SCI. A few studies of patients with SCI‐induced NLUTD previously evaluated QOL by urinary management with SF‐36 or KHQ,^{6, 8} but these studies did not demonstrate results of QOL by time since injury.^{6, 8} Liu et al⁶ evaluated QOL of 142 patients with SCI of whom 21.1% were female at mean 67.8 months since injury by urinary management. Patients with SCI had low subscale scores in PF and RP, probably due to the presence of paraplegia or tetraplegia. While a minimum clinically important difference in SF‐36 is supposed to be approximately five points,²⁰ GH, vitality (VT), and mental health (MH) subscale scores of patients with CIC < 24 months after RH were poor (within almost ±5 points), compared to patients with SCI who performed CIC themselves (clean intermittent self‐catheterization, CISC). In contrast to this, in patients with CIC ≥24 months after RH, these subscale scores were about 2 to 10 points higher than those in patients with CISC after SCI. In addition, scores of patients with CIC after RH were approximately 15 to 17 points higher in mean PCS than those of patients with SCI. Patients with CIC < 24 months had a mean MCS similar to that of patients with SCI, while patients with CIC ≥24 months had a MCS approximately nine points higher than the mean MCS compared to that in patients with SCI. Yasami et al⁸ evaluated 171 patients with SCI of whom 26% were female at mean 55.09 months since injury by urinary management. The subscale scores in this study were generally higher than the scores in the study reported by Liu et al,⁶ although scores of PF and RP were still low. Surprisingly, five of the remaining six subscale scores in patients with CIC < 24 months after RH were within ±5 points of (bodily pain, BP) or more than 5 points lower (GH, VT, SF, and MH) than those in patients with CISC after SCI, while four of the subscale scores in patients with CIC ≥ 24 months after RH remained within almost ±5 points (BP, GH, VT, and MH) compared with those in patients with CISC after SCI. Liu et al⁶ also measured KHQ in patients with SCI. The patients had low domain scores in social limitations, personal relationships, and severity measures, probably due to physical disabilities as well as sexual dysfunctions. While a minimum clinically important difference in KHQ is supposed to be approximately five points,²⁰ surprisingly, all of the remaining six domain scores in patients with CIC < 24 months after RH are within ±5 points of (general health perception, role limitations, physical limitations) or more than 5 points higher (incontinence impact, emotions, and sleep/energy) than those in patients with CISC after SCI. In contrast to this, except the sleep/energy domain score, which remained within ±5 points, the other five domain scores in patients with CIC ≥ 24 months after RH were approximately 10 to 23 points lower than those in patients with CISC after SCI. Taken together, these findings indicate that healthcare professionals should be aware that the implementation of CIC after RH restricts daily as well as physical activities and everyday relationships, and negatively affects the perception of the bladder condition as well as the mental status causing a depressive, anxious, nervous, bad, or exhausted mood, which corresponds to the degree of patients with SCI.

Although in the present study, patients with CIC showed significantly worse, or a trend toward worse, QOL scores in several subscales/domains than patients with SV for the entire period and <24 months after RH, QOL did not demonstrate significant differences between patients with SV and those with CIC ≥24 months after RH. Moreover, it was suggested that QOL of patients with CIC improved with time because scores on the perception of GH as well as bladder condition, daily activities, everyday relationships, and mental status showed better results for patients ≥24 months than for patients <24 months after RH. These improvements in QOL may contribute to the lack of significant differences in QOL between patients with CIC and those with SV ≥24 months after RH. One of the reasons why this phenomenon occurs could be interpreted as the concept of a “response shift.”²¹ A response shift is defined as the change in an individual's internal standards, values, or conceptualizations that occur in response to a particular catalyst, such as NLUTD requiring CIC, which means that a response shift is a psychological process that allows an individual to maintain an acceptable QOL in the face of deteriorating health.²¹ Because patients treated for gynecologic malignancies are often informed about the possible consequences of their treatment, they expect lower urinary tract dysfunction to occur and find their own way to cope with these complaints.²² Furthermore, Bergmark et al²³ reported that 90% of the patients were not willing to trade survival for freedom from symptoms derived from treatments, such as lymphedema, as well as bladder, bowel, and sexual dysfunctions. Taken together, patients with CIC can adapt to a new situation with time, which would allow them to maintain an acceptable QOL despite continuing CIC.

If patients requiring CIC after RH have as poor QOL as patients with SCI in the short term, but the response shift occurs during follow‐up, what should healthcare professionals keep in mind in clinical practice? The results from the norm‐based scoring of SF‐36 in the present study suggest that while patients need comprehensive support in implementing CIC, they also need individualized support for maintaining daily activities and overcoming physical as well as mental barriers to work while continuing CIC. Since the response shift can be helpful or unhelpful depending on the context, it is noteworthy that encouraging patients to focus on areas of their life that are positive, and to set goals in areas that are highly valued and progressing well would be helpful.²¹ Performing CIC in women poses increased complexity compared with performing CIC in men because access to the urethra is more challenging for women, and women can perceive CIC as intrusive, embarrassing, and aversive.¹¹ Patients who are not able to establish a reasonable routine, due to a lack of social support or logistical means to allow for timely CIC, are more likely to abandon it.¹¹ Thus, unsurprisingly, patients who remain on CIC in the long term become well adjusted and are less likely to be dissatisfied with CIC.¹¹ Until recently, we have seen patients with CIC monthly because of a restriction on reimbursement for catheters for CIC by the Japanese healthcare system. This means that healthcare professionals who have a deep knowledge of CIC are able to counsel patients with CIC monthly on their problems in implementing as well as continuing CIC and help solve problems, which might contribute to improvement of several subscale scores with time.

The present study has several limitations. First, this is not a longitudinal study but a cross‐sectional study with a small number of patients. A longitudinal study with a larger cohort is imperative to investigate the serial changes in QOL. Second, we did not use NLUTD‐ or CIC‐specific QOL questionnaires. Regrettably, we can only use a Japanese version of the Qualiveen‐Short Form for patients with SCI as an NLUTD‐specific questionnaire,¹ and could not use the Japanese version of the Intermittent Self‐Catheterization Questionnaire²⁴ because it was not published at that time. Third, we did not investigate the association between urinary complications, for example, frequency or severity of urinary incontinence, or recurrent UTI and QOL. Since those complications are associated with reduced QOL in patients with SCI,^{6, 9} further studies are needed to determine the presence or absence of the association in patients after RH. Fourth, we did not use a uterine cervical cancer‐specific QOL questionnaire, which renders assessment of the impact of sexual or bowel dysfunctions on SF‐36 and KHQ impossible. Finally, we did not investigate QOL data for patients who were not referred to the NLUTD clinic as well as age‐matched control subjects. However, data on patients with SV and the norm‐based scoring of SF‐36 would compensate for the lack of those QOL data to some extent. Taking these limitations into consideration, we think that the present study provides valuable information on potential changes in QOL of patients with CIC over time, which probably have not been systematically investigated in patients with NLUTD.

In conclusion, the present cross‐sectional study showed that patients with CIC after RH showed significantly worse, or a trend toward worse, QOL scores in several subscales/domains on SF‐36 and KHQ than patients with SV for the entire period, primarily due to the lower QOL in patients with CIC < 24 months after RH. Therefore, to enhance QOL of patients with CIC, healthcare professionals must make every effort to provide patients with comprehensive support in implementing CIC as well as individualized support to maintain their daily activities and work while continuing CIC.

DISCLOSURE

We conducted this study with institutional research funds and did not receive funding from government, corporations, or companies.

Open Research

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.