Abstract
BackgroundThe Quality of Life in Neurological Disorders (Neuro-QoL) item banks evaluate and monitor the physical, mental, and social health of individuals with neurological conditions. Neuro-QoL items can be administered via short form or computerized adaptive testing. This paper describes the English-to-Simplified Chinese translation of 299 items from 13 adult item banks, which are publicly available.MethodsItems were translated according to the Functional Assessment of Chronic Illness Therapy (FACIT) method, including forward and backward translation, reconciliation, expert reviews, and cognitive debriefing with both general and clinical populations in China.ResultsMost of the 299 Simplified Chinese items were well understood by the respondents. Revisions were made on a small number of items after cognitive debriefing. Although some difficulties were encountered in the translation process, all 13 item banks were linguistically validated with acceptable translations.ConclusionAll Chinese adult Neuro-QoL measures are linguistically equivalent to their English sources. Future work includes psychometric validation of these measures in order to create a final version of the item banks. The translation methodology used in this study can serve as a blueprint for researchers in other countries interested in translating the Neuro-QoL.
Highlights
The Quality of Life in Neurological Disorders (Neuro-QoL) item banks evaluate and monitor the physical, mental, and social health of individuals with neurological conditions
They were translated according to the Functional Assessment of Chronic Illness in Therapy (FACIT) translation methodology, which employs a universal approach to translation and cross-cultural validation [16, 17]
We identified numerous challenges in the translation process, including: Step7: Cognitive Interviews
Summary
The Quality of Life in Neurological Disorders (Neuro-QoL) item banks evaluate and monitor the physical, mental, and social health of individuals with neurological conditions. Neurological disorders can influence one’s health-related quality of life (HRQoL) in different domains. Precise measurement that evaluates different aspects of HRQoL provides a fuller understanding of the effects of disease or treatment on the patient [1, 2]. The Neuro-QoL project, sponsored by the United States (U.S.) National Institute of Neurological Disorders and Stroke (NINDS), aimed to develop a clinically relevant, bilingual (English & Spanish), and psychometrically robust PRO for adults and children with neurological disorders in the U.S [7, 10]. The final domains in the adult version were developed for five neurological conditions: stroke, multiple sclerosis, Parkinson’s disease, epilepsy, and amyotrophic
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