The Use of an Iterative Strategy of Cognitive Interview and Expert Consultation to Revise the Quality of Life Scale for Patients with Aplastic Anemia (QLS-AA)

BACKGROUND: Aplastic anemia is characterized by anemia, hemorrhage and infection, and is accompanied by a variety of complications and psychological burden. Therefore, the quality of life of AA patients is not optimistic. Our team is committed to developing an assessment tool for the quality of life of AA patients, and adopting an iterative strategy of cognitive interview and expert consultation to solve the challenges encountered in item revision. PURPOSE: We aim to use the strategy of cognitive interview and expert consultation to inform revision of the QLS-AA into a user-friendly tool with unambiguous items and improve the content validity of the scale. METHODS: We used an iterative strategy of cognitive interview and expert consultation. Two rounds of cognitive interview were conducted to identify problems with item comprehension, recall and other cognitive processes. As well as, a multi-disciplinary group of expert consultation was consulted to review the rationality of item revisions. RESULTS: In the first round of cognitive interview, 16 participants responded to 107 items. Among them, the most common problems were “clarification” and “item duplication”. Based on the results of the first round of interview, an expert consultation was organized. A total of 16 amendments were put forward by the expert and 14 were adopted. In the second round of cognitive interviews, A total of 5 participants were included and 64 items were evaluated. Two items were suggested to be revised, and the remaining items were accurately understood and recognized by all participants. COUCLUSION: This study highlights the key issues to consider when incorporating patient perspectives into quality measurement. The revision of QLS-AA through the strategy of cognitive interview and expert consultation may provide valuable insights into the measurement of quality of life in aplastic patients. TRIAL REGISTRATION NUMBER: ChiCTR2100047575.