Hutchins, Melanie

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.

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.

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 Japanese 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.

OBJECTIVE Facial nerve function, hearing preservation, and tumor control have been the primary benchmarks used to assess vestibular schwannoma (VS) outcomes. Acknowledging the frequent discrepancy between what physicians prioritize and what patients value, there has been increasing prioritization of patient-reported outcome measures when evaluating the impact of VS diagnosis and its treatment. Motivated by reported limitations of prior instruments used to assess quality of life (QOL) in patients with VS, the authors describe the development and validation of a new disease-specific QOL measure: the Vestibular Schwannoma Quality of Life (VSQOL) Index. METHODS The content development phase comprised identification of clinically important domains and prioritization of feelings or concerns individuals with VS may have. The validation phase encompassed determining how items were grouped into domains and eliminating redundant items. Both phases leveraged data from cross-sectional and longitudinal surveys, expertise from a multidisciplinary working group, and patients with a broad range of experiences with VS (n = 42 during content development and n = 263 during validation). Domain scores from the new instrument were assessed for reliability and correlation with other measures of similar constructs. RESULTS The VSQOL Index consists of 40 items that evaluate the impact of VS diagnosis and its management on QOL, treatment satisfaction, and employment and is estimated to take 8–10 minutes to complete. Domain scores range from 0 (worst) to 100 (best) and demonstrate excellent psychometric properties, including content, construct, and convergent validity and both internal consistency (Cronbach’s alphas 0.83 to 0.91) and test-retest reliability (reliability coefficients 0.86 to 0.96). CONCLUSIONS The VSQOL Index is a valid and reliable measure that overcomes several limitations of prior instruments, including omission or underrepresentation of domains that frequently impact well-being, such as pain, cognition, satisfaction or regret surrounding treatment decisions, and occupational limitations, to comprehensively evaluate the impact of VS diagnosis or its treatment on QOL.