A self-management package for pulmonary fibrosis: A feasibility study

Joanna Y.T. Lee , Gabriella Tikellis , Mariana Hoffman , Christie R. Mellerick , Karen Symons , Janet Bondarenko , Yet H. Khor , Ian Glaspole , Anne E. Holland
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Abstract

Background and objective

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.

Methods

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.

Results

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.

Conclusion

A PF-specific self-management package was feasible to deliver and requires further testing in a trial powered to detect changes in clinical outcomes.

Innovation

This is the first self-management package designed specifically for people with PF, informed by patient experience and expert consensus.

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肺纤维化自我管理包:可行性研究
背景和目的目前还没有针对肺纤维化患者需求而设计的自我管理套餐。本研究评估了肺纤维化患者专用自我管理套餐的可行性和可接受性。方法将肺纤维化患者随机分配(1:1),让他们接受有医护人员(HCP)支持的自我管理套餐或标准化肺纤维化信息。主要结果是干预的可行性和可接受性。次要结果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 相关治疗的使用以及医疗保健的利用率。通过定性访谈探讨了参与者使用该套餐的经验。招募率为 91%,100% 的招募者被随机分配。87%的受试者在收到套餐后阅读了≥1个模块并设定了目标。次要结果的收集是可行的,评估完成率很高(87%)。大多数参与者表示,该套餐易于使用并能增强知识,但也提出了一些改进建议,而医护人员的支持则得到了高度评价。创新这是首个专为宫颈糜烂患者设计的自我管理套餐,其设计参考了患者经验和专家共识。
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来源期刊
PEC innovation
PEC innovation Medicine and Dentistry (General)
CiteScore
0.80
自引率
0.00%
发文量
0
审稿时长
147 days
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