Lee Joanna Y T, Tikellis Gabriella, Hoffman Mariana, Mellerick Christie R, Symons Karen, Bondarenko Janet, Khor Yet H, Glaspole Ian, Holland Anne E
Respiratory Research@Alfred, School of Translational Medicine, Monash University, Melbourne, Australia.
Institute for Breathing and Sleep, Melbourne, Australia.
PEC Innov. 2024 Aug 5;5:100328. doi: 10.1016/j.pecinn.2024.100328. eCollection 2024 Dec 15.
There is currently no self-management package designed to meet the needs of people with pulmonary fibrosis (PF). This study evaluated the feasibility and acceptability of a PF-specific self-management package.
Adults with PF were randomly allocated (1:1) to either receive the self-management package with healthcare professional (HCP) support or standardised PF information. Primary outcomes were feasibility and acceptability of the intervention. Secondary outcomes included health-related quality of life, self-efficacy, breathlessness, daily steps, use of PF-related treatments, and healthcare utilisation. Participants' experiences of using the package were explored using qualitative interviews.
Thirty participants were included. Recruitment rate was 91% and 100% of those recruited were randomised. Eighty-seven percent of participants who received the package read ≥1 module and set a goal. Secondary outcomes were feasible to collect with high assessment completion rates (87%). Most participants reported the package was easy to use and enhanced knowledge, but suggested some improvements, while HCP support was highly valued.
A PF-specific self-management package was feasible to deliver and requires further testing in a trial powered to detect changes in clinical outcomes.
This is the first self-management package designed specifically for people with PF, informed by patient experience and expert consensus.
目前尚无专门为肺纤维化(PF)患者设计的自我管理方案。本研究评估了一种针对PF的自我管理方案的可行性和可接受性。
成年PF患者被随机分配(1:1),分别接受有医疗保健专业人员(HCP)支持的自我管理方案或标准化的PF信息。主要结局是干预措施的可行性和可接受性。次要结局包括与健康相关的生活质量、自我效能感、呼吸困难、每日步数、PF相关治疗的使用情况以及医疗保健利用情况。通过定性访谈探索了参与者使用该方案的体验。
纳入了30名参与者。招募率为91%,且所有招募的参与者均被随机分组。接受该方案的参与者中有87%阅读了≥1个模块并设定了目标。次要结局易于收集,评估完成率很高(87%)。大多数参与者报告该方案易于使用且增加了知识,但也提出了一些改进建议,同时HCP的支持受到高度重视。
一种针对PF的自我管理方案实施起来是可行的,需要在有足够动力检测临床结局变化的试验中进一步测试。
这是首个专门为PF患者设计的自我管理方案,以患者体验和专家共识为依据。