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AbstractWith increasing opportunities for minors to undergo genomic testing, factors influencing young people's decision stability and instability regarding genomic testing are unclear. This interpretive description study examines decision stability when adolescents (13–17) and young adults (18–21) decide whether to learn genetic testing results. Adolescents and young adults enrolled in a clinical trial chose whether they wanted to learn genetic testing results and could modify their decisions during a study visit or 2 weeks later. A purposive sample of clinical trial participants was invited to participate in an interview exploring their decision preferences, confidence level, and factors impacting decision stability. Twenty‐two participants chose to learn all (n = 7), some (n = 7), or no genetic test results (n = 8). Perceptions of the impact of personal genetic information on one's quality of life and sense of reproductive goals and responsibilities were driving factors for people who chose to learn no or some genetic results, while curiosity influenced those who chose to learn all. Prior health and healthcare experiences and others' influence also factored into decision‐making about receiving results. Decision stability varied among individuals but increased over time and was positively influenced by parents, baseline decision confidence, and fear of missing out on the opportunity to learn genetic information. Participants felt favorably about the opportunity to change their decision 2 weeks after the study visit. Among study participants, decision stability was high, as was satisfaction with decisions regarding how much personal genetic information to learn. The results suggest that adolescent and young adult genetic research participants may experience high decision stability and confidence in making choices regarding personal genetic testing, especially when a window of opportunity for change is available. Researchers and clinicians should consider the benefits and challenges of offering multiple checkpoints to bolster decision stability.

ImportanceDirect immunofluorescence (DIF) testing has been an important ancillary tool for the diagnosis of various inflammatory mucocutaneous conditions for more than 50 years. Current DIF test panels are based on historical clinical descriptions; few studies have rigorously addressed preanalytical, analytical, and/or postanalytical aspects, and even fewer have been replicated or validated. Recent unresolved key issues include whether DIF testing and test panels should be triaged or truncated based on clinical indication or histopathologic findings.ObjectiveTo assess levels of consensus regarding practical aspects of DIF testing among immunodermatology testing specialists in the US.Design, Setting, and ParticipantsUsing modified Delphi methods with a priori characterized criteria, a survey containing 54 statements pertaining to DIF testing was created and distributed to assess consensus. Statements not initially reaching consensus were discussed in 2 live virtual sessions, which were supplemented by relevant literature review and free-text survey comments. These statements were then reassessed in a second survey. Immunodermatology testing specialists in US academic institution–based and independent laboratories were invited based on serving as immunodermatology laboratory medical directors, authoring pertinent literature, or delivering relevant talks at major conferences or by referral. The first survey was conducted from January to February 2024, and the second survey was conducted from March to April 2024.Main Outcomes and MeasuresThe primary measured outcome was degree of consensus for various DIF testing practice, including DIF testing triage by histopathology/dermatopathology findings and DIF testing panel tailored truncations by clinical indication.ResultsA total of 23 respondents to the survey invitation had a mean (SD) of 18.5 (11.1) years and median (range) of 20.0 (1.5-46.0) years in immunodermatology laboratory practice. Consensus was achieved for 46 of 54 statements (85.2%) in the initial survey and for an additional 4 statements in the second survey (50 of 54 [92.6%]). Strong consensus was found against tailored truncation of DIF panel based on the clinical indication in the first survey round. The general acceptability of triaging specimens for DIF testing based on histopathology findings remained without consensus after both surveys.Conclusions and RelevanceOverall, participating US specialists in immunodermatology laboratory testing agreed on many practical aspects of DIF testing, including matters not queried previously. The findings also revealed areas of continued controversy and identified issues for prioritized future study.

To address the limitations of existing instruments, the authors developed the Vestibular Schwannoma Quality of Life (VSQOL) Index. The Index captures the multifaceted impacts of vestibular schwannoma (VS) on daily life across eight categories: hearing problems; dizziness and imbalance; pain, discomfort, and tinnitus; problems with face or eyes; impact on physical, emotional, and social well-being; difficulty with thinking and memory; satisfaction or regret; and impact on employment. Initially developed in English, this digital supplement of the Journal of Neurosurgery presents translations of the VSQOL Index to Simplified Chinese, Spanish, Japanese, Arabic, French, and Norwegian. These translations aim to improve access to VS quality of life (QOL) research globally with enhanced racial, ethnic, and geographic representation. The goal is to comprehensively evaluate the impact of VS diagnosis and management on well-being and QOL by offering the VSQOL Index in patients’ native, or first-learned, languages. The English version and these translations may be used for noncommercial research, clinical, or educational purposes without written permission from the authors. Investigators interested in translating the VSQOL Index to other languages should contact the corresponding author for translation methodology instructions.

Abstract Objectives The aim of this study was to compare the measured physiological factors that limit running performance with real marathon results from world-class distance runners, evaluating the compatibility between measured data and predicted results based on the previously suggested model. Methods Four world-class East African marathon runners (three male, one female) underwent physiological running assessments to predict marathon performance times using a model based on V ˙ $\dot {\mathrm{V}}$ O 2 peak, percentage of V ˙ $\dot {\mathrm{V}}$ O 2 peak at the second ventilatory threshold, and running economy. Predictions were then compared to participants’ best marathon times. Results The measured V ˙ $\dot {\mathrm{V}}$ O 2 peak of the world-class runners was 75.1 ± 2.7 mL/kg/min. The second ventilatory threshold occurred at 85 ± 3 % of the peak, with a running economy of 63.7 ± 2.4 mL/kg/min at 19.6 ± 0.9 km/h. The predicted marathon performance time was 2:06:51 ± 0:03:17 h:min:s for the males and 2:17:36 h:min:s for the female. Comparing these predictions to their personal best times, the average difference was 00:55 ± 00:51 min:s (range: 00:20-02:08). Conclusions This research provides laboratory data on world-class road running athletes, reinforcing the link between marathon performance and V ˙ $\dot {\mathrm{V}}$ O 2 peak, the percentage of V ˙ $\dot {\mathrm{V}}$ O 2 peak at the second ventilatory threshold, and running economy. The examined athletes had lower V ˙ $\dot {\mathrm{V}}$ O 2 peak compared to predicted values, highlighting the importance of running economy and fractional utilization of V ˙ $\dot {\mathrm{V}}$ O 2 peak in achieving such performances. Future studies should continue to advance the field by including additional bioenergetic parameters measured during race conditions and expanding the participant cohort of elite marathoners, encompassing both sexes.

The authors developed a new disease-specific patient-reported outcome measure to capture the multifaceted impacts of vestibular schwannoma on daily life, the Vestibular Schwannoma Quality of Life (VSQOL) Index, which contains 40 items grouped into eight categories: hearing problems; dizziness and imbalance; pain, discomfort, and tinnitus; problems with face or eyes; impact on physical, emotional, and social well-being; difficulty with thinking and memory; satisfaction or regret; and impact on employment. 1 The VSQOL Index was developed in English, although the availability of this instrument in other languages can improve access to quality of life (QOL) research worldwide with enhanced racial, ethnic, and geographic representation. The authors partnered with FACITtrans, a component of the Functional Assessment of Chronic Illness Therapy (FACIT) group with more than 25 years of experience in translation, cultural adaptation, and linguistic validation of patient-reported outcome measures, to translate the VSQOL Index to Norwegian using a rigorous translation methodology. 2–5 The translation of the VSQOL Index presented at the end of this article may be used for noncommercial research, clinical, or educational purposes without seeking written permission from the authors. By providing a suite of translations in this digital supplement of the Journal of Neurosurgery , the authors hope to increase the reach and breadth of vestibular schwannoma QOL research and facilitate international collaborations.

The authors developed a new disease-specific patient-reported outcome measure to capture the multifaceted impacts of vestibular schwannoma on daily life, the Vestibular Schwannoma Quality of Life (VSQOL) Index, which contains 40 items grouped into eight categories: hearing problems; dizziness and imbalance; pain, discomfort, and tinnitus; problems with face or eyes; impact on physical, emotional, and social well-being; difficulty with thinking and memory; satisfaction or regret; and impact on employment. 1 The VSQOL Index was developed in English, although the availability of this instrument in other languages can improve access to quality of life (QOL) research worldwide with enhanced racial, ethnic, and geographic representation. The authors partnered with FACITtrans, a component of the Functional Assessment of Chronic Illness Therapy (FACIT) group with more than 25 years of experience in translation, cultural adaptation, and linguistic validation of patient-reported outcome measures, to translate the VSQOL Index to French using a rigorous translation methodology. 2–5 The translation of the VSQOL Index presented at the end of this article may be used for noncommercial research, clinical, or educational purposes without seeking written permission from the authors. By providing a suite of translations in this digital supplement of the Journal of Neurosurgery , the authors hope to increase the reach and breadth of QOL research and facilitate international collaborations.

The authors developed a new disease-specific patient-reported outcome measure to capture the multifaceted impacts of vestibular schwannoma on daily life, the Vestibular Schwannoma Quality of Life (VSQOL) Index, which contains 40 items grouped into eight categories: hearing problems; dizziness and imbalance; pain, discomfort, and tinnitus; problems with face or eyes; impact on physical, emotional, and social well-being; difficulty with thinking and memory; satisfaction or regret; and impact on employment. 1 The VSQOL Index was developed in English, although the availability of this instrument in other languages can improve access to quality of life (QOL) research worldwide with enhanced racial, ethnic, and geographic representation. The authors partnered with FACITtrans, a component of the Functional Assessment of Chronic Illness Therapy (FACIT) group with more than 25 years of experience in translation, cultural adaptation, and linguistic validation of patient-reported outcome measures, to translate the VSQOL Index to Simplified Chinese using a rigorous translation methodology. 2–5 The translation of the VSQOL Index presented at the end of this article may be used for noncommercial research, clinical, or educational purposes without seeking written permission from the authors. By providing a suite of translations in this digital supplement of the Journal of Neurosurgery , the authors hope to increase the reach and breadth of QOL research and facilitate international collaborations.

The authors developed a new disease-specific patient-reported outcome measure to capture the multifaceted impacts of vestibular schwannoma on daily life, the Vestibular Schwannoma Quality of Life (VSQOL) Index, which contains 40 items grouped into eight categories: hearing problems; dizziness and imbalance; pain, discomfort, and tinnitus; problems with face or eyes; impact on physical, emotional, and social well-being; difficulty with thinking and memory; satisfaction or regret; and impact on employment. 1 The VSQOL Index was developed in English, although the availability of this instrument in other languages can improve access to quality of life (QOL) research worldwide with enhanced racial, ethnic, and geographic representation. The authors partnered with FACITtrans, a component of the Functional Assessment of Chronic Illness Therapy (FACIT) group with more than 25 years of experience in translation, cultural adaptation, and linguistic validation of patient-reported outcome measures, to translate the VSQOL Index to Arabic using a rigorous translation methodology. 2–5 The translation of the VSQOL Index presented at the end of this article may be used for noncommercial research, clinical, or educational purposes without seeking written permission from the authors. By providing a suite of translations in this digital supplement of the Journal of Neurosurgery , the authors hope to increase the reach and breadth of QOL research and facilitate international collaborations.

The authors developed a new disease-specific patient-reported outcome measure to capture the multifaceted impacts of vestibular schwannoma on daily life, the Vestibular Schwannoma Quality of Life (VSQOL) Index, which contains 40 items grouped into eight categories: hearing problems; dizziness and imbalance; pain, discomfort, and tinnitus; problems with face or eyes; impact on physical, emotional, and social well-being; difficulty with thinking and memory; satisfaction or regret; and impact on employment. 1 The VSQOL Index was developed in English, although the availability of this instrument in other languages can improve access to quality of life (QOL) research worldwide with enhanced racial, ethnic, and geographic representation. The authors partnered with FACITtrans, a component of the Functional Assessment of Chronic Illness Therapy (FACIT) group with more than 25 years of experience in translation, cultural adaptation, and linguistic validation of patient-reported outcome measures, to translate the VSQOL Index to Spanish using a rigorous translation methodology. 2–5 The translation of the VSQOL Index presented at the end of this article may be used for noncommercial research, clinical, or educational purposes without seeking written permission from the authors. By providing a suite of translations in this digital supplement of the Journal of Neurosurgery , the authors hope to increase the reach and breadth of QOL research and facilitate international collaborations.