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.

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.

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.

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.

The Effect of Epidermal Growth Factor Receptor Mutation on Intracranial Progression-Free Survival of Non-Small Cell Lung Cancer Patients with Brain Metastasis Underwent Gamma Knife Radiosurgery.

BACKGROUND: The aim of this study was to survey prognostic factors, particularly those focusing on epidermal growth factor receptor (EGFR) mutations, of patients with non-small cell lung cancer (NSCLC) after Gamma Knife Radiosurgery (GKRS) for metastatic brain tumors. METHODS: We retrospectively reviewed the medical records of 98 patients with NSCLC who underwent GKRS for brain metastases from August 2010 to July 2017. The primary endpoint was progression-free survival (PFS) of the intracranial disease. We analyzed variables such as age, sex, Karnofsky Performance Status, recursive partitioning analysis (RPA) class, smoking status, primary cancer pathology, EGFR mutations, and time to brain metastases as prognostic factors. RESULTS: The median overall survival (OS) of the patients was 16 months [95% confidence interval (CI), 13-21 months]. Median systemic PFS and intracranial PFS were 9 months (95% CI, 8-11 months) and 11 months (95% CI, 7-14 months), respectively. Kaplan-Meier survival analysis revealed that the patients with EGFR mutations had longer intracranial PFS than those without EGFR mutation (median intracranial PFS: 19 vs. 10 months with p=0.01) while they had no benefits in OS and systemic PFS. Furthermore, the patients harboring adenocarcinoma had longer OS (p<0.01) and intracranial PFS (p<0.01) and the patients with lower RPA class had longer OS (p=0.02) and intracranial PFS (p=0.03). CONCLUSION: EGFR mutations, primary cancer pathology, and RPA class may be proposed as prognostic factors for intracranial PFS in NSCLC patients after GKRS for brain metastasis in this study.

Risk and protective factors related to stigma among people with epilepsy: An integrative review.

INTRODUCTION: Stigma is a critical issue among people with epilepsy (PWE). There is a need to undertake an integrative review of the factors associated with stigma, as it is experienced subjectively, and cannot be fully understood through quantitative research alone. The aims of this study were to explore the factors influencing epilepsy-associated stigma and to extend our understanding of stigma using an integrative review approach. METHODS: Three databases (i.e., CINAHL, PubMed, and PsycINFO) were searched for articles published from January 2010 through December 2018 on stigma among PWE. Selected articles were assessed for quality using the mixed-method appraisal tool. The matrix method was used for data extraction and analysis. Overall, the process of the review was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist. RESULTS: Overall, 26 studies were included in this review: four qualitative studies, twenty-one quantitative studies, and one mixed-method study. Several factors associated with stigma were found, divided into four categories across two main aspects: individual (i.e., disease and social characteristics) and community (i.e., overall impression/beliefs regarding epilepsy and social networks) based on the Framework Integrating Normative Influences on Stigma. CONCLUSIONS: The impression of and beliefs about epilepsy among the general population as well as among PWE were the primary factors affecting stigma. Thus, there is a need for the provision of accurate information about epilepsy to both these groups. Additional studies on epilepsy-associated stigma employing various methodological approaches are required.