Preliminary Results: Both High and Low Literacy Lung Transplant Patients Have Difficulty Adhering to and Interpreting Home Spirometry

Abstract

Purpose Given the complexity of the lung transplant (LT) medical regimen, health literacy (HL) may significantly impact post-transplant outcomes. We present preliminary results regarding the ability of LT patients to understand and adhere with the medical regimen after LT. Methods and Materials We performed a mixed-methods study of LT patients. Subjects completed structured assessments and were sampled for qualitative interviews based on level of HL (Test of Functional HL in Adults) and self-reported medical adherence (Health Habits Assessment). Qualitative interviews included open-ended questions regarding facilitators and barriers to adherence. Results A total of 73 patients have been enrolled (response rate: 67%). Median (IQR) age was 61 (46, 68). Most participants were female (50%) and white (88%). Prevalence (95% CI) of low HL was 23% (14, 35). Patients with low and adequate HL reported not understanding the purpose of home spirometry (89% vs. 76%, ns) and not adhering to home spirometry monitoring (55% vs. 35%, ns) respectively. Both low and adequate HL subjects reported difficulty interpreting home spirometry values and few knew to call their coordinator with a 10% FEV1 drop. For example, when asked, “How do you decide when to call the nurse coordinator about your spirometer measurements?” a low HL subject responded: “I didn’t really realize that this spirometer would be telling you about the possibility [of] rejecting.” A subject with adequate HL said, “I think if it’s below, what is it…4? You’re in a range…and if you go too high or too low you call. I think my range was 4 to 5.” Conclusions More than 20% of LT patients had low HL. Both low and adequate HL patients had difficulty performing and understanding their home spirometry measurement. The results of this study demonstrate that better education regarding spirometry may be an important intervention to improve outcomes for all LT patients. We are currently underpowered to detect a difference between HL groups but continue to enroll patients in this study.