Using qualitative methods to inform the design of a decision aid for people with advanced cystic fibrosis: The InformedChoices CF patient decision aid
Using qualitative methods to inform the design of a decision aid for people with advanced cystic fibrosis: The InformedChoices CF patient decision aid
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DOI：
10.1016/j.pec.2019.06.007
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发表时间：
2019-11-01
影响因子：
3.5
通讯作者：
Hajizadeh, Negin
中科院分区：
文献类型：
--
作者：
Basile, Melissa;Andrews, Johanna;Hajizadeh, Negin
目的：评估成人囊性纤维化患者及其家属对设计有创机械通气(IMV)和肺移植决策辅助工具的信息需求。方法：采用焦点小组和深度访谈的方法，了解受试者对IMV和肺移植的相关知识、既往的临床对话和决策。访谈和焦点小组被记录下来并记录下来进行分析。结果：N=24名参与者被招募。确定的主题是：先前与临床医生的沟通，决策过程，以及与CF的生活。参与者先前与CF临床医生就以下问题进行过对话：肺移植(N=17/74%)和IMV(N=3/13%)。大多数15人(65%)认为听取患者的真实生活经验很重要，其他人(3/13%)依赖他们的CF医生提供信息。大多数人(16/70%)认为听力预测是有帮助的，但有5人(22%)认为这个信息很可怕。结论：定性方法有助于确定对成人的IMV和LT决策有重要意义的区域。未来的方向包括决策辅助工具的可用性和可行性测试。实践意义：由于IMV很少与成人CF讨论，临床医生可能会像移植一样处理这个话题，因为肺功能开始下降。慢性阻塞性肺疾病护理团队还应促进慢性阻塞性肺疾病患者层面的信息交流。(C)2019爱思唯尔B.V.保留所有权利。
Objective: To assess information needs of adults with Cystic Fibrosis and their families toward designing a patient decision aid about invasive mechanical ventilation (IMV) and lung transplant.Methods: Focus groups and in-depth interviews explored participants' knowledge, prior clinical conversations, and decisions about IMV and lung transplant. Interviews and focus groups were recorded and transcribed for analysis.Results: N= 24 participants were recruited. Themes identified were: prior communication with clinicians, decision-making process, and living with CF. Participants having prior conversations with CF clinicians regarding: lung transplant (N =17/74%), and IMV (N =3/13%). Most 15(65%) felt it was important to hear patients' real-life experience, others (3/13%) relied on their CF doctors for information. Most people (16/ 70%) believed hearing prognosis was helpful, but 5(22%) found this information frightening. High degrees of social isolation and a desire for more interaction with other CF adults were found.Conclusions: Qualitative methods helped identify areas important for decision making about IMV and LT for CF adults. Future directions include usability and feasibility testing of the decision aid.Practice implications: Because IMV is rarely discussed with CF adults, clinicians might approach this topic, as with transplant, as lung function begins to decline. CF-care teams should also foster CF patient-level information exchange. (C) 2019 Elsevier B.V. All rights reserved.