Young Dave, Bartlett Lauren E, Reid Nick, Hartzler Andrea L, Bradford Miranda C, Goss Christopher H, Pilewski Joseph M, Dunitz Jordan M, Saavedra Milene, Berry Donna L, Kapnadak Siddhartha G, Hobler Mara R, Ramos Kathleen J
Department of Biology, University of Washington, Seattle, WA, USA.
Department of Medicine, University of Washington, Seattle, WA, USA.
Patient Educ Couns. 2025 Aug;137:108822. doi: 10.1016/j.pec.2025.108822. Epub 2025 May 5.
Cystic fibrosis (CF) causes progressive respiratory disease and premature death. Lung transplantation (LTx) is an important treatment consideration for people with CF (PwCF). Among PwCF, does preparedness for LTx and knowledge about LTx improve by reading personal narratives from CF LTx recipients ("CF Stories")?
Adults with CF were recruited and presented with online CF Stories. Pre- and post-intervention questionnaires assessed LTx preparedness, knowledge, and decisional conflict. Deductive thematic analysis of study visits was conducted.
Twenty-five participants were included. Pre-intervention, 24 % (6/25) reported feeling "very prepared" to discuss LTx. Among the remaining 19, preparedness improved post-intervention for 74 % (n = 14, 95 % CI: 51-88 %), with 42 % (n = 8, 95 % CI: 23-64 %) transitioning to feeling "very prepared." Baseline transplant knowledge was high (100 % questions correct) among 48 % (12/25) of participants; among the remaining 13, 92 % (n = 12, 95 % CI: 67-99 %) scored 100 % post-intervention. Decisional conflict improved for 67 % of participants (16/24), with a mean individual Decisional Conflict Scale change of -9.4 (95 % CI: -2.8, -15.9; p = 0.01). Thematic analysis revealed that participants valued practical LTx insights and relatable stories, identifying key medical information for LTx discussions.
CF Stories improved knowledge and preparedness for LTx discussions.
Personal narratives could enhance preparedness for LTx discussions and decision-making for PwCF.
囊性纤维化（CF）会导致进行性呼吸系统疾病和过早死亡。肺移植（LTx）是囊性纤维化患者（PwCF）重要的治疗考量。在PwCF中，阅读囊性纤维化肺移植受者的个人经历（“CF故事”）是否会提高对LTx的准备程度和相关知识？
招募成年CF患者并让他们在线阅读CF故事。干预前后的问卷评估了LTx的准备程度、知识水平和决策冲突。对研究访问进行了演绎主题分析。
纳入了25名参与者。干预前，24%（6/25）的参与者表示对讨论LTx “准备非常充分”。在其余19名参与者中，74%（n = 14，95% CI：51 - 88%）在干预后准备程度有所提高，其中42%（n = 8，95% CI：23 - 64%）转变为感觉“准备非常充分”。48%（12/25）的参与者基线移植知识水平较高（100%的问题回答正确）；在其余13名参与者中，92%（n = 12，95% CI：67 - 99%）在干预后得分100%。67%的参与者（16/24）决策冲突有所改善，决策冲突量表的平均个人变化为 -9.4（95% CI：-2.8，-15.9；p = 0.01）。主题分析显示，参与者重视LTx的实用见解和相关故事，确定了LTx讨论的关键医学信息。
CF故事提高了对LTx讨论的知识水平和准备程度。
个人经历可以增强PwCF对LTx讨论和决策的准备程度。
