Our study involves collaboration/participation in order to develop culturally sensitive multinational tools for assessing post viral symptoms. We discuss the creation of questionnaires using patient participation, and the translation of these questionnaires using international collaboration. Patient engagement in collaboration on the creation and use of these types of instruments is of particular importance for patients who historically have not been true partners in collaborative efforts to understand diseases. This has occurred for those with the post-viral illness called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which has generated considerable resentment and estrangement among the patient community. Our article reviews: 1) why participation of diverse groups/patients is important in the development of instruments to measure key symptoms of ME/CFS, 2) why the ME/CFS group of patients needs to be included specifically (as an example), and 3) why structured health questionnaires are important/useful. Our article also has an overall aim of demonstrating collaborative efforts with patients and others on creating multinational scales. We provide examples of participatory processes used in developing and translating patient-driven instruments so that they can be used in non-English speaking countries. Our article illustrates how patients and international researchers can be involved in efforts to develop and translate international assessment instruments to validly capture domains of unexplained illness like ME/CFS. With the onset of another post-viral illness, Long COVID, there is a world-wide need to create valid and culturally sensitive assessment instruments to measure critical symptoms, many of which are similar to ME/CFS.
Keywords: participatory process, survey translation, survey translation guidelines, survey development, DePaul Symptom Questionnaire, DePaul Post-Exertional Malaise Questionnaire, long-haul COVID
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