Translation and validation of the Korean version of the QUAlity of Life Assessment in Spina bifida for Teenagers (QUALAS-T-K).

PURPOSE: The Quality of Life Assessment in Spina bifida for Teenagers (QUALAS-T) is a tool used to evaluate health-related quality of life (HRQOL) in adolescents with spina bifida (SB). The purpose of this study was to translate the QUALAS-T into Korean and validate its Korean version (QUALAS-T-K). METHODS: Translation and validation processes were carried out in accordance with a specified protocol, including forward and back translation, a content validity study, and a main study. The tool's reliability was evaluated based on its internal consistency and stability. Factor analysis was conducted, and convergent validity was confirmed using the KIDSCREEN-27. RESULTS: Of the 59 participants, 35 had lipomyelomeningoceles. Confirmatory factor analysis confirmed that QUALAS-T-K had the same structure as QUALAS-T. The QUALAS-T-K showed excellent internal consistency (α: 0.872-0.893, ω: 0.875-0.885), test-retest reliability (ICC:0.84-0.92), and weak to strong correlations with the KIDSCREEN-27. CONCLUSIONS: The QUALAS-T-K, developed by reflecting on the characteristics of SB and considering the applicability of Korean cultural characteristics and clinical practice, is a convenient and reliable tool with excellent internal consistency and stability. This could be a useful tool in clinical and research settings for HRQOL evaluation of adolescents with SB.Implications for RehabilitationOptimizing health-related quality of life (HRQOL) is one of the goals of individuals with spina bifida (SB), and HRQOL measures that reflect the condition specificity of SB should be performed.The QUAlity of Life Assessment in Spina bifida for Teenagers (QUALAS-T), developed in the USA, is a self-reported HRQOL questionnaire used in research and clinical practice for adolescents with SB.This study revealed that the QUALAS-T, translated into Korean, is a valid, convenient, and reliable tool.The Korean version of the QUALAS-T is a useful tool that can be used in clinical and research settings to optimize HRQOL in adolescents with SB.

Cross-cultural adaptation and validation of the Korean version of the quality of life assessment in spina bifida for children (QUALAS-C-K).

PURPOSE: This study aimed to translate and cross-culturally adapt the QUAlity of Life Assessment in Spina bifida for Children (QUALAS-C) and validate the Korean version of the QUALAS-C (QUALAS-C-K). MATERIALS AND METHODS: Three urologists translated the QUALAS-C into Korean. Facial and content validity were assessed in the pilot study. Back-translation into English was performed. In the main study, the QUALAS-C-K and Korean version of KIDSCREEN-27 were administered simultaneously. Test-retest reliability was confirmed by re-administering the QUALAS-C-K. Internal consistency was verified using Cronbach's alpha. Factor analysis was performed, and convergent and divergent validity were demonstrated using the Korean version of KIDSCREEN-27. RESULTS: A total of 53 children with spina bifida participated in the main study. Cronbach's alpha for the overall instrument determined good internal consistency (0.72-0.85), the intraclass correlation coefficient showed good stability (0.74-0.77), and the factor analysis converged to the same two-factor structure as in the original version. Construct validity revealed weak-to-moderate associations (r ≤ 0.57) between QUALAS-C-K and K-KIDSCREEN-27, indicating that QUALAS-C-K measures different aspects of the HRQOL than K-KIDSCEEN-27. CONCLUSIONS: The QUALAS-C-K is a reliable and valid instrument for assessing the health-related quality of life of children with SB in Korea.IMPLICATIONS FOR REHABILITATIONHealth-related quality of life (HRQOL) is an important patient-reported outcome among children with spina bifida (SB).The QUAlity of Life Assessment of Spina bifida for Children (QUALAS-C) is a self-reported, age-appropriate, and condition-specific HRQOL questionnaire for children with SB, developed in the United States.Our study demonstrated that the Korean version of the QUAlity of Life Assessment of Spina bifida for Children (QUALAS-C-K) is a valid and reliable tool.The QUALAS-C-K is a succinct and valuable questionnaire that can be used to assess HRQOL of children with SB, particularly focusing on bladder and bowel problems in clinical practice and research.

The association between nurse continuity and hypospadias repair patient outcomes: A retrospective study.

BACKGROUND: Recently, nurse continuity, the intensity and consistency of a patient's exposure to nurses during hospitalization, has been shown to be associated with patient outcomes. However, little is known about how nurse continuity is related to patients' surgical outcomes. AIMS: To examine the association between nurse continuity and outcomes of hypospadias repair to clarify the importance of nurse continuity as a nursing practice. DESIGN: This is a retrospective study. METHODS: We analysed the data from electronic health records of patients under 1 year who had undergone proximal hypospadias repair between January 2014 and December 2016. Nurse continuity was measured using the Continuity of Care Index. Since approximately half of the patients reportedly needed further operations in the long term, the primary outcome was whether patients with proximal hypospadias repair had two or more additional operations within 3 years of discharge. RESULTS: The rate of undergoing two or more follow-up operations in 3 years was significantly higher in patients with low nurse continuity-38.6% versus 12.8% for high continuity. CONCLUSION: This study identified nurse continuity as an important factor related to patients' surgical outcomes. These findings suggest that nurse continuity be considered an important nursing strategy for patient outcomes and further research is needed on this topic. IMPACT STATEMENT: As empirical evidence regarding the association between nurse continuity and patient outcomes grows, nurse managers and policymakers should view nurse continuity as a critical factor for positive patient outcomes when considering nursing workforce regulations. NO PATIENT OR PUBLIC CONTRIBUTION: The data for this study were obtained from electronic health records, and the entire process of this study did not involve patient or public participation.

Factors affecting the transition to adulthood of Korean young adults with spina bifida: a qualitative study.

BACKGROUND: Transition to adulthood to live independently while self-managing health and daily life without parental help is crucial for young adults with chronic conditions. Despite its importance as a precursor to effectively managing lifelong conditions, little is known about the experiences of young adults with spina bifida (SB) in transition to adulthood in Asian countries. This study aimed to explore the experiences of Korean young adults with SB to identify the facilitators or barriers to the transition from adolescence to adulthood from their perspectives. METHODS: This study used a qualitative descriptive design. The data were collected in South Korea through three focus group interviews with 16 young adults with SB, aged 19-26, from August to November 2020. We conducted a qualitative content analysis using a conventional approach to identify the factors that facilitated and hindered the participants' transition to adulthood. RESULTS: Two themes emerged as facilitators and barriers to the transition to adulthood. a) Facilitators: understanding and acceptance of SB, acquiring self-management skills, parenting styles encouraging autonomy, parents' emotional support, school teachers' thoughtful consideration, and participation in self-help groups. b) Barriers: overprotective parenting style, experience of being bullied by peers, damaged self-concept, concealing one's chronic condition from others, and the lack of privacy in school restrooms. CONCLUSIONS: Korean young adults with SB shared their experiences of struggling to properly manage their chronic conditions on their own, particularly concerning regular bladder emptying, during the transition from adolescence to adulthood. To facilitate the transition to adulthood, education on the SB and self-management for adolescents with SB and on parenting styles for their parents are important. To eliminate barriers to the transition to adulthood, improving negative perceptions of disability among students and teachers and making school restrooms CIC-friendly are needed.

Analysis of factors affecting permanent clean intermittent catheterization and bladder function after primary neurosurgical repair of lipomyelomeningocele.

AIMS: This study was conducted to identify potential risk factors for permanent clean intermittent catheterization (CIC) and incontinence in patients with lipomyelomeningocele (LMMC) and evaluate how LMMC affects bladder function prognosis, measured by urodynamic (UD) score. METHODS: This retrospective study analyzed the electronic health records of patients who underwent primary neurosurgical repair for LMMC at a single tertiary referral center between January 2012 and December 2016 and were followed at least 3 years after surgery. Data regarding bladder function were obtained from medical records for multiple time points, including before surgery, after surgery but before hospital discharge, 3 months after surgery, and at outpatient visits during follow-up. RESULTS: This study enrolled 120 patients. At a mean follow-up of 62.6 ± 13.9 months after primary neurosurgical LMMC repair, 22 (18.3%) patients continued to require CIC for bladder emptying, only 7 (31.8%) of whom maintained bladder continence. A multivariate logistic regression model identified age at the time of surgery and the type of LMMC as significant presurgical prognostic risk factors for permanent CIC. In addition, postoperative urinary retention and a UD score greater than or equal to 5 measured 3 months after surgery were identified as significant postsurgical risk factors for permanent CIC and urinary incontinence. A linear mixed model adjusted for age at the time of surgery showed that patients with a transitional or chaotic LMMC type were more likely to experience gradual bladder function decline than patients with other LMMC types. CONCLUSIONS: This study identified both presurgical (age at the time of surgery, LMMC type) and postsurgical (postoperative urinary retention, UD score greater than or equal to 5 at 3 months postsurgery) risk factors for permanent CIC and urinary incontinence. In addition, LMMC type was identified as a prognostic risk factor for bladder function decline. These results will enhance the current understanding of bladder function outcomes in patients who undergo surgical treatment for LMMC.

Cross-cultural adaptation and validation of the Korean modified version of the QUAlity of Life Assessment in Spina bifida for Young Adults (QAULAS-YA-Km).

PURPOSE: The QUAlity of Life Assessment in Spina bifida (QUALAS) for adults (QUALAS-A) evaluates the health-related quality of life (HRQOL), reflecting the condition specificity of adults with spina bifida (SB). The study's purpose was to translate and cross-culturally adapt the QUALAS-A into Korean and validate a Korean-modified version of the QUALAS for Young Adults (QUALAS-YA-Km). METHOD: Face and content validity were evaluated in the pilot study. Internal consistency and test-retest reliability were confirmed in the main study. Factor analysis was performed, and convergent and divergent validity was verified using the World Health Organization Quality of Life assessment instrument abbreviated version (WHOQOL-BREF). RESULTS: Forty-seven adults had myelomeningocele. Five items with low communality were deleted through the factor analysis, and the domains were renamed. The QUALAS-YA-Km showed good internal consistency (Cronbach's alpha 0.73-0.83) and excellent test-retest reliability (intraclass correlation coefficient 0.84-0.89). The QUALAS-YA-Km showed good convergent and divergent validity, with weak to strong correlations with the WHOQOL-BREF. CONCLUSIONS: Developed with consideration of Korea's cultural characteristics, the QUALAS-YA-Km is a convenient and reliable instrument, with good internal consistency, stability, and construct validity. This can be a useful tool in clinical and research settings for HRQOL optimization in young adults with SB.Implications for RehabilitationOptimizing health-related quality of life (HRQOL) is one of the goals of people with spina bifida (SB), which requires HRQOL measurements that reflect the condition specificity of SBThe QUAlity of Life Assessment of Spina bifida for Adults (QUALAS-A) is a self-reported HRQOL questionnaire for adults with SB developed in the United States, which is used in research and clinical practiceThe present study revealed that the Korean modified version of the QUAlity of Life Assessment of Spina bifida for Young Adults (QUALAS-YA-Km), developed in consideration of the cultural characteristics of Korea, is a valid, convenient, and reliable toolThe QUALAS-YA-Km, is a useful tool that can be used in clinical and research settings for HRQOL optimization in adults with SB.

Long-term usage pattern and satisfaction survey of continent catheterizable channels.

INTRODUCTION: We investigated the long-term usage pattern and satisfaction of continent catheterizable channels (CCCs). METHODS: From 2005 to 2018, CCCs, including Mitrofanoff and antegrade continent enema (ACE) channels, were made in 67 patients (Mitrofanoff in 21 patients, ACE channels in 43 patients, and both in three patients) in our institution. An online survey was conducted for these patients in order to assess usage pattern, continent status, difficulty in usage, and patient satisfaction. RESULTS: Sixteen (66.7%) out of 24 patients with the Mitrofanoff channel and 39 (84.7%) out of 46 patients with the ACE channel completed the online survey. In the Mitrofanoff channel group, 10 (62.5%) patients had spina bifida, two (12.5%) had Hinman syndrome, one (6.3%) had posterior urethral valves, and three (18.8%) had urethral trauma or atresia. Additionally, the mean age of the patients at the time of surgery was 10.0 years, and the median follow-up duration was 10.9 years. All patients were using the Mitrofanoff channel to perform clean intermittent catheterization (CIC). Eleven patients (68.8%) had difficulty with catheterization, mostly at the stomal site. Most patients conducted CIC more than four times a day (13, 81.3%). Regarding urination status, seven patients (43.8%) responded that they were satisfied and nine (56.2%) responded they were neutral. In the ACE channel group, 35 patients (89.7%) had spina bifida, seven (17.9%) had cloacal anomalies, and 26 (66.7%) had anorectal malformations. The mean age of the patients at the time of surgery was 8.4 years, and the median follow-up period was 7.4 years. Two (5.1%) patients were no longer using their ACE channels, but 15 (38.5%) patients were still using their channels almost daily. Twenty-eight (71.8%) patients complained that performing enema was time-consuming, and seven (17.9%) patients reported pain when performing ACE and fecal incontinence. Most patients were satisfied with their defecation status (23, 59%), 15 (38.5%) were neutral, and one (2.6%) was dissatisfied. CONCLUSIONS: While most patients who had either Mitrofanoff or ACE channels were still using their channels effectively, approximately half of the patients with CCCs demonstrated neutral satisfaction with their current status; this shows a poor result compared to previous reports. Considering the results of our patient-based study, thorough explanations should be provided to patients who are candidates for Mitrofanoff and ACE procedures; additionally, the discomfort related to the procedures should be comprehensively assessed during follow-up consults.

Discrepancies in Educational Needs for Transition in Adolescents and Young Adults with Spina Bifida in South Korea: Use of the Borich Needs Assessment Model.

PURPOSE: Transition is an important goal for ensuring that adolescents and young adults (AYAs) with spina bifida (SB) lead autonomous lives. This study aimed to identify the educational needs of AYAs with SB based on the discrepancies between perceived importance and proficiency levels during the transition process. DESIGN AND METHODS: A cross-sectional study was conducted through face-to-face and online surveys from Jan-Dec 2020 of AYAs aged 13-25 years who had previously been diagnosed with SB. The survey consisted of 37 transition-related questions, of which 11 pertained to healthcare environments and 26 pertained to transition education needs SPSS and Excel were used for statistical analysis. Transition educational needs were analyzed by the Borich Needs Assessment Model. Higher the mean weighted discrepancy scores, lower the proficiency as compared to the perceived importance, indicating that the educational needs were high. RESULTS: Overall, 108 responses were analyzed, and 56 (51.9%) AYAs were diagnosed with lipomyelomeningocele. The highest ranked educational needs were for "Health insurance system", "SB related urinary system diseases management", "SB related nervous system symptoms", and "Self-catheterization management". "The demands for 'SB related work life", "Urinary incontinence management", and "Constipation management" were significantly higher in young adults than adolescents. CONCLUSIONS: During the transition process, activities perceived as important by AYAs with SB may differ from the activities that they can actually perform proficiently. It is important to assess their needs based on these discrepancies. PRACTICE IMPLICATIONS: Transition education programs are needed that consider the individual educational needs and developmental stage-specific characteristics of AYAs with SB.

Two-Step Integrative Education Program and mHealth for Korean Children with Spina Bifida: A Quasi-Experimental Pre-Post Study.

PURPOSE: Self-management of the daily tasks associated with condition management is an important goal for children with spina bifida (SB)to achieve for adolescence. This study investigated the effects of a two-step self-management improvement program including an onsite, integrative education program and mHealth on children with SB based on the Individual and Family Self-Management Theory. DESIGN AND METHODS: We used a pretest-posttest, quasi-experimental design with a nonequivalent control group. Open-ended questions were administered to obtain the opinions of the participants and their parents on the intervention program. The intervention effectiveness was evaluated by repeated-measures ANOVA using factors such as school adjustment, self-management knowledge, self-efficacy, self-management behavior, and quality of life measurement in 35 children with SB aged 7-12 years and their parents from July 2018 to October 2018. RESULTS: This intervention program did not result in a significant difference in quantitative outcomes between the experimental and control groups, but qualitatively, the children participating in this study and their parents responded positively to the self-management program. CONCLUSION: The current study demonstrated the potential effectiveness of this self-management program in children with SB. PRACTICE IMPLICATIONS: When healthcare providers develop an intervention for school-going children who are the digital native generation, up-to-date technological interventions, level of motivation of children, and intervention dosage should be taken into consideration.

A 2-Step Integrative Education Program and mHealth for Self-Management in Korean Children with Spina Bifida: Feasibility Study.

PURPOSE: The aim of this study was to develop and test the feasibility of a 2-step self-management program, including onsite integrative education and a mobile health (mHealth) intervention, for children with spina bifida (SB). DESIGN AND METHODS: This feasibility study used a quasi-experimental single group pre-and post-test design. The onsite integrative education and the mHealth program, "Glowing Stars™," were developed and then tested for content validity by a panel of experts. The feasibility and user satisfaction were evaluated using factors such as school adjustment, self-management knowledge, self-efficacy, self-management behavior, and quality of life measurement by children aged 10 to 12 years with SB and their parents, from March 2018 to April 2018. RESULTS: A total of five children with SB completed this intervention. All children perceived that this program was usable and feasible to maintain self-management behavior. A statistically significant difference was observed in the children's self-management behavior domain between the first and second post-test (p = .043). CONCLUSION: This innovative 2-step self-management intervention program complements existing single interventions and confirms the possibility of mHealth technology as an intervention for children with SB. PRACTICE IMPLICATIONS: In pediatric nursing, this innovative intervention could be adapted for children with chronic conditions, with a positive effect on self-management.

Parents' Needs Concerning Their Children with Spina Bifida in South Korea: A Mixed Method Study.

PURPOSE: This study aimed to determine the needs of children with spina bifida (SB) and their families from their parents' perspective in South Korea. DESIGN AND METHODS: This was a convergent mixed methods study design. From December 2016 to February 2017, parents of children with SB participated in a quantitative prospective observational study (N = 164), using the Family Needs Assessment Tool. Qualitative focus group interviews were conducted, according to three developmental stages (N = 15) in May 2017. Integrated analyses were conducted jointly by merging the quantitative and qualitative findings. RESULTS: Quantitative findings revealed very high parental needs in three assessment domains: information, healthcare service/program, and difficulties related to healthcare. Ten qualitative themes were identified in these 3 domains. Quantitative and qualitative methods enabled more extensive findings. Comparison and merging of the data resulted in six confirmed and four expanded findings. In particular, we identified the need for a child-focused self-management program, a bladder/bowel disability awareness program, welfare policies, and partnership with healthcare professionals as the expanded findings. CONCLUSION: This mixed method study provided empirical evidence to help better understand the complex needs of parents of children with SB. PRACTICE IMPLICATIONS: When developing and providing healthcare education and service to families of children with SB, especially, in countries where SB educational programs have not been established yet, it is important to develop them based on their own needs, which may vary based on the child's developmental stage and socio-cultural characteristics.

Sexual function and qualify of life in women with spina bifida: Are the women with spina bifida satisfied with their sexual activity?

AIMS: As the life expectancy of persons with spina bifida increases, sexual life in adulthood presents a considerable challenge for this population. The purpose of this study was to evaluate the sexual function of young women with spina bifida and its impact on their quality of life (QOL). METHODS: To assess sexual function and QOL by using self-administered questionnaires (Female Sexual Function Index [FSFI] and 36-Item Short Form Health Survey) in young women with spina bifida, we collected data from 44 young women with spina bifida between June 2013 and October 2013 at the spina bifida clinic of our hospital. RESULTS: Sexual dysfunction was noted in 55.5% of women with spina bifida who had sexual activity in the previous month. In sexually active women, the diagnosis, ventriculoperitoneal shunt in situ, mobility, and clean intermittent catheterization did not show a significant difference between each subdomain (desire, arousal, lubrication, orgasm, satisfaction, and pain) and the total FSFI score. However, women who did not have urinary incontinence experienced better sexual function in terms of lubrication and pain scores (P = 0.033 and P = 0.026, respectively). Both the physical and mental composites of QOL were positively weakly correlated with the arousal score of FSFI (r = 0.455, P = 0.044 and r = 0.507, P = 0.023, respectively). CONCLUSIONS: More than half of sexually active women with spina bifida experience sexual dysfunction. Therefore, health-care providers should pay attention to the symptoms and their management.

Sexual Function and Quality of Life in Young Men With Spina Bifida: Could It Be Neglected Aspects in Clinical Practice?

OBJECTIVE: To evaluate the sexual function of young men with spina bifida and the impact of the disorder on the quality of life (QOL). MATERIALS AND METHODS: To assess sexual function and QOL by using self-administered questionnaires (International Index of Erectile Function [IIEF] and 36-Item Short Form Health Survey) for young men with spina bifida. We collected data from 47 young men with spina bifida between June 2013 and October 2013 at the spina bifida clinic of Severance Children's Hospital, Seoul, South Korea. RESULTS: Of the 47 men who completed the IIEF, 24 (51.1%) had sexual intercourse at least once during the previous month, and the patients' sexual activity status had a significant association with their sexual function; however, the status of their sexual activity did not show any differentiation with their QOL scores. Concerning overall satisfaction in sexual activity, about 87% reported more than mild dysfunction; however, 67% and 50% had normal erectile function and orgasmic function, respectively. In 10 patients (41.7%) among them, the frequency of ejaculation problems ranged from "sometimes" to "most of the time" during sexual activity. The correlation between sexual function and QOL had a statistically significant association with the weak correlation (r = 0.496, P = .014). CONCLUSION: Sexual function should be evaluated routinely in patients with spina bifida because such patients experience sexual dysfunction, although sexual function did not directly show a significant correlation with the QOL in this study.