INTRODUCTION
Patients with neurogenic bladder should be treated with appropriate behavioral therapy such as adequate water intake and restriction of caffeinated drinks to promote proper urination. Although medications such as alpha-blockers, anticholinergic agents, beta-3 agonists, and antidiuretic hormone are very common as therapies, these drugs are often not fully effective in achieving complete control of frequent lower urinary tract symptoms such as urinary frequency, urgency, and persistence. A large amount of residual urine and urinary tract infections are more common in patients with neurogenic bladder than in the general population, and neurogenic bladder patients are at a higher risk of kidney damage in the long term [1]. Therefore, to overcome the limitations of behavioral therapy and pharmacotherapy, a catheter can be used to perform clean intermittent catheterization (CIC), which regularly empties the bladder, at least 4–6 times a day.
To date, nelaton catheters, which are mainly composed of rubber, are most commonly used in patients with neurogenic bladder who need to perform self-catheterization because they are the cheapest and most affordable options. However, nelaton catheters are so weak that they are difficult to insert into the urethra. Additionally, it is difficult to store and transport them cleanly and smoothly, and they have disadvantages, such as an increased risk of urinary tract infections and urethral trauma that occurs during reuse [2]. To overcome these shortcomings, various types of catheters have been marketed. However, very few tools are available in Korea for evaluating patient satisfaction, ease of use, and quality of life when using these catheters. Therefore, doctors cannot objectively evaluate patients’ perspectives about performing catheterization in the outpatient clinic.
In recent years, the importance of patient satisfaction and quality of life—referred to as patient-related outcomes—has been emphasized, in addition to the evaluation of symptoms and severity through questionnaires. However, the questionnaires that can be applied to Korean patients with neurogenic bladder are limited. Therefore, the current study linguistically validated the Intermittent Self-Catheterization Questionnaire (ISC-Q) as an instrument to evaluate the quality of life of patients with neurogenic bladder who regularly perform CIC.
MATERIALS AND METHODS
Intermittent Self-Catheterization Questionnaire
The ISC-Q is used to evaluate aspects of quality of life specific to the needs of individuals performing intermittent self-catheterization [3]. It focuses on 4 issues: ease of use, convenience, discreetness, and psychological well-being.
Translation and Linguistic Validation
The Institutional Review Board of Seoul Metropolitan Government - Seoul National University Boramae Medical Center approved this study (approval number: 26-2016-64). This procedure was conceptually the same as that of previous studies designed to obtain translated versions of other questionnaires in Korean. The linguistic validation of the ISC-Q consisted of forward translation, reconciliation, backward translation, cognitive debriefing, and proofreading [4,5]. Two different bilingual translators performed forward translations, and in the process of the first forward translation left comments on difficulty, meaning, and alternative options for translation. Then, in the backward translation, cases where words were differently translated were reconciled into one English word. Comments on difficulty, meaning, and alternative options for translation were reflected in the backward translation, cognitive debriefing, and proofreading process.
Permission
Acquisition of consent was received directly from the researcher who developed the ISC-Q.
Forward Translation
Two independent bilingual speakers each performed a standard translation and also translated expressions and meanings from the original questionnaire into conceptually equivalent Korean words.
Reconciliation
Two bilingual speakers compared their differences in translation, and agreed on the most relevant Korean words for the final forward translated Korean version.
Backward Translation
A third bilingual speaker performed a backward translation of the reconciled version of the Korean questionnaire into English. Afterwards, the 3 bilingual speakers met to discuss the differences among the original questionnaire, the reconciled version of the forward translation of the questionnaire, and the backward translation of the questionnaire. During this process, some comments on difficult-to-understand phrases were made on the basis of comparing the original text and the translated questionnaire in English, and alternative options for translation were suggested.
Cognitive Debriefing
The final questionnaire was given to 5 patients with different backgrounds in terms of age, sex, pathology, and educational level. The questionnaire was evaluated as being understandable, difficult to understand, or meaningless. Survey interviews were performed to interpret each question in the questionnaire and to provide participants with an opportunity to indicate whether there were difficulties in understanding the questions or whether there were any confusing terms.
RESULTS
Forward Translation and Reconciliation
As shown in Table 1, the 24 questions of the ISC-Q were translated into Korean. The subject of the questionnaire (ISC-Q) was translated as ganheoljeok jagadonyo seolmunji. The word “intermittent” was translated as bijeonggi and ganheoljeok in translations 1 and 2, respectively. The panel agreed on ganheoljeok (“intermittent”).
Ease of use
Question 1, “It is easy to prepare my catheter for use each time I need it” in the original version, was translated as naneun piryosi sayonghal su itdorok kateteoreul swipge junbihal su itda. The word “easy” was translated as yongi and swipge in translations 1 and 2, respectively. The panel agreed on swipge (“easy”).
Question 2, “It is messy to prepare my catheter for use” in the original version, was translated as naneun kateteoreul sayonghal su itdorok junbihaneunge bokjapada. The word “messy” was translated as golchiapeuda (“troubled”) in translation 1, and bokjapada (“complicated”) in translation 2. The phrase “for use” was translated as piryosi and sayonghal su itdorok in translations 1 and 2, respectively. Finally, the panel agreed on bokjapada and sayonghal su itdorok.
Question 3, “It is easy to insert my catheter” in the original version, was translated as naneun kateteoreul sabipaneun ge swipda. The word “easy” was translated as eoryeopji anta and swipda in translations 1 and 2, respectively. The panel agreed on swipda.
Question 4, “I find inserting the catheter is uncomfortable sometimes” in the original version, was translated as naneun kateteo sabip si gakkeum bulpyeonhameul neukkinda.
Question 5, “The design of the catheter makes it easy to insert” in the original version, was translated as kateteoui dijaini sabipagie swipge doeeo itda.
Question 6, “The catheter is fiddly to use” in the original version, was translated as kateteoreul sayonghagie seonggasida. The word “fiddly” was translated as seonggasida by both translators.
Question 7, “The lubrication on the catheter makes it difficult to use” in the original version, was translated as kateteoui yunhwaraegeuro inhae sayonghagiga eoryeopda. The word “lubrication” was translated as yunhwal in translation 1, and yunhwaryu in translation 2. The panel agreed on yunhwaraek.
Question 8, “I feel confident in my ability to use my catheter” in the original version, was translated as naneun kateteoreul jal hwaryonghaneunde jasini itda.
Convenience
Question 9, “Storage of catheters at home is inconvenient” in the original version, was translated as jibeseo kateteoreul bogwanhagie bulpyeonhada.
Question 10, “Taking enough catheters for a weekend away is very inconvenient” in the original version, was translated as jumaldongan oechulsi kateteoreul chungbunhi gajyeoganeun geosi maeu bulpyeonhada.
Question 11, “Taking enough catheters for a 2-week holiday is very inconvenient” in the original version, was translated as 2 weeks hyugasi kateteoreul chungbunhi gajyeoganeun geosi maeu bulpyeonhada. The word “weekend” was translated as yeohaeng in translation 1, and as hyuga in translation 2. The panel agreed on hyuga.
Question 12, “Disposal of my catheter is inconvenient when away from home” in the original version, was translated as jip bakke inneun gyeongu kateteoreul pyegihaneun geosi bulpyeonhada. The phrase “when away from home” was translated as jibeul tteonasseul ttae and jip bakke inneun gyeongu in translations 1 and 2, respectively. The panel reconciled it as jip bakke inneun gyeongu. The category of “discreetness” was translated as eunmilseong in translation 1, and as sinjungseong in translation 2. The panel agreed on eunmilseong.
Discreetness
Question 13, “I find it easy to carry enough catheters around with me on a day-to-day basis” in the original version, was translated as naneun harue piryohan mankeumui kateteoreul gajigo danineun geosi swipda.
Question 14, “I find it easy to dispose of my catheter when I am away from home” in the original version, was translated as naneun jip bakke inneun gyeongu kateteoreul pyegihaneun geosi swipda. The phrase “when I am away from home” was translated as jibeul tteonasseul ttae and jip bakke inneun gyeongu in translations 1 and 2, respectively. The panel reconciled it as jip bakke inneun gyeongu. The word “dispose” was translated as cheori in translation 1, and as cheobun in translation 2. The panel agreed on pyegi.
Question 15, “My catheter is discreet” in the original version, was translated as nae kateteoneun swipge nune ttuiji anneunda. The word “discreet” was translated as swipge nune ttuiji anneunda in translation 1, and as samgada in translation 2. The panel agreed on swipge nune ttuiji anneunda.
Question 16, “I can use my catheter discreetly when I am away from home” was translated as naneun jip bakke inneun gyeongu nameul uisikaji anko kateteoreul sayonghal su itda. The word “discreetly” was translated as eunmilhage in translation 1, and as josimseureopge in translation 2. The panel agreed on nameul uisikaji anko.
Question 17, “I can easily dispose of my catheter without it being obvious to people” in the original version, was translated as naneun kateteoreul nune ttuiji anke swipge pyegihal su itda.
Question 18, “My catheter allows me to feel confident when away from home” in the original version, was translated as jip bakke inneun gyeongu kateteoro inhae jasini itda.
Psychological well-being
Question 19, “I am self-conscious about my need to self-catheterize” in the original version, was translated as naneun jagadonyoui piryoseongeul uisikago itda.
Question 20, “I would feel embarrassed if people saw my catheter in its packet” in the original version, was translated as naneun dareun saramdeuri nae kateteo yonggireul bondamyeon bukkeureoumeul neukkil geot gatda.
Question 21, “My need to use a catheter sometimes makes me feel embarrassed” in the original version, was translated as naneun kateteo sayongi gakkeum piryohadaneun jeomeuro inhae bukkeureoumeul neukkinda.
Question 22, “I worry that my catheter doesn’t always empty my bladder fully” in the original version, was translated as naneun kateteoga naui banggwangeul hangsang wanjeonhi biuji motalkka bwa geokjeongdoenda. The word “empty” was translated as baechulsikida in translation 1, and as biuda in translation 2. The panel agreed on biuda.
Question 23, “My need to use catheters stops me from visiting friends and family as often as I would like” in the original version, was translated as kateteo sayongi piryohadaneun jeomeuro inhae wonhaneun mankeum chinguwa gajogeul jaju mannal su eopda. The phrase “my need to use catheters” was translated as naneun kateteoreul sayonghagi ttaemune and naui kateteo sayong piryoro inhae in translations 1 and 2, respectively. The panel agreed on kateteo sayongi piryohadaneun jeomeuro inhae.
Question 24, “I worry about the risk of long-term problems from using my catheter” in the original version, was translated as naneun kateteo sayonge uihan janggijeok munjeui wiheome daehae geokjeongdoenda.
Backward Translation and Retranslation
As shown in Table 2, the panel discussed the differences between translations of “the catheter is fiddly to use” in the original version and “it is bothersome to use the catheter” in the reconciled version. The panel finally agreed to change the translated term seonggasida in Korean to darugi himdeulda. The panel agreed to change the translated question kateteoui yunhwaraegeuro inhae sayonghagiga eoryeopda in Korean to kateotega yunhwaldoeeo sayonghagi eoryeopda.
For the category of “discreetness,” the panel ultimately agreed to change the translated term eunmilseong to bunbyeolseong. The panel discussed the differences between “I find it easy to dispose of my catheter when I am away from home” in the original version and “it is easy (for me) to dispose the catheter when I’m outside the house” in the reconciled version. The panel commented on whether or not it would be suitable to change jip bakke inneun gyeongu (“when away from home”) to oechulsi (“when I’m outside the house”). The panel finally agreed to change the term. The panel agreed to change the translated question nae kateteoneun swipge nune ttuiji anneunda to kateteoneun taineul uisikaji anko manjokseureopge sayongdoelman hada. The panel discussed the differences between “I can use my catheter discreetly when I am away from home” in the original version and “I can use the catheter (when I’m) outside my house (without being conscious of others)” in the reconciled version. The panel commented on whether or not it would be suitable to change jip bakke inneun gyeongu (“when away from home”) to oechulsi (“when I’m outside the house”). The panel agreed to change the translated question jip bakke inneun gyeongu kateteoro inhae jasini itda to oechul si kateteoro inhae jasingami saengginda. The panel agreed to change the translated question naneun kateteo sayongi gakkeum piryohadaneun jeomeuro inhae bukkeureoumeul neukkinda to naneun kateteoreul sayonghaeya handaneun piryoseong ttaemune gakkeum bukkeureopda. The panel also agreed to change the translated question naneun kateteo sayonge uihan janggijeok munjeui wiheome daehae geokjeongdoenda to naneun kateteo sayonge uihan janggijeok munjega balsaenghalkka geokjeongdoenda.
Cognitive Debriefing and Proofreading
The translated questionnaire was tested by 5 patients with neurogenic bladder who regularly performed CIC. As shown in Table 3, age, pathology, level of education, and time to complete the questionnaire varied across all 5 patients. The patients aged 70 years or older were not able to answer the questionnaire correctly, and the time required for the questionnaire ranged from 10 to 15 minutes. A 60-year-old male patient did not know the meaning of “catheter,” so he used his cell phone to search for the meaning of that word in the questionnaire. When asked whether the questionnaire explained the situation of the patient well, all the patients answered “yes.” In addition, the format of the questionnaire was not particularly inconvenient for all patients. The final version is shown in Fig. 1.
DISCUSSION
Reviewing some words that had comments in the translation process, the word “messy” in question 2 was changed to “complicated” when translating into Korean because the meaning of “dirty, clutter” was inappropriate. As a result, it was translated as “complicated” in the backward translation process.
For question 5, the opinion was raised that the word for ‘design’ was difficult to translate into Korean because the word for “design” is a loanword in Korea, and it was felt that the passive expression was a bit awkward. However, it was backward-translated as “design,” and therefore the panelists agreed to use the word “design” as a loanword.
The expression “fiddly” from question 6 was reconciled and backward-translated to “bothersome” because it refers to inconveniences when dealing with small objects, such as a needle and thread. Furthermore, in question 15, the meaning of “discreet” was implicative, so the decision was made that some further description was needed, and the expression was changed to “not easily noticeable.” As a result, it was backward-translated into “not easily seen/noticed (by others).”
In conclusion, this present study presents the successful linguistic validation of the Korean version of the ISC-Q. The Korean version of the ISC-Q will play an important role in assessing the quality of life and the satisfaction of Koreans who are performing CIC, and it will serve as a tool that allows physicians to objectively evaluate patients who are performing CIC.