Abstract

Purpose In order to ensure adequate self-management after solid organ transplantation (Tx), patients need sufficient knowledge about correct medication intake, a healthy lifestyle and monitoring vital signs. Nurses typically take the lead in educating patients prior to post-Tx discharge. No instrument currently exists, however, to determine the patients level of knowledge and need for remediating interventions. We aimed to develop, validate and implement a self-report instrument to measure knowledge post-Tx. Methods We used a phased approach: 1) An item pool was created based on a literature search, an evaluation of current practice, and cognitive debriefings with 11 international Tx professionals. 2) 12 professionals determined the Item and Scale content validity (S-CVI) in two rounds. 3) The instrument was piloted in 58 Dutch speaking Tx patients prior to discharge (60.3% male; median age 60 years; 17.2% lung Tx and 13.7% heart Tx), aiming to describe patients’ level of knowledge, and the instruments’ construct validity by comparing scores based on level of education and health literacy. Results The final instrument consists of 35 questions with S-CVI of 0.94, indicating excellent content validity. The median knowledge score at discharge was 28/35 points (interquartile range [IQR] = 5.25; range 16-35). Lower health literacy, but not education level (p= 0.198), was associated with lower knowledge (p=0.034). Conclusion Our newly designed knowledge instrument shows excellent content and construct validity, and will allow to more formally evaluate whether patients have sufficient knowledge at time of post-Tx discharge. Further validation in larger, international samples is indicated.

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