Faculty of Health Sciences, McMaster University, 1280 Main St, W, Hamilton ON, L8N 3Z5, Canada.
Health Qual Life Outcomes. 2014 Jun 11;12:93. doi: 10.1186/1477-7525-12-93.
Refractory angina is a severe chronic disease, defined as angina which cannot be controlled by usual treatments for heart disease. This disease is frightening, debilitating, and difficult to manage. Many people suffering refractory have inadequate pain relief, continually revisit emergency departments for help, undergo repeated cardiac investigations, and struggle with obtaining appropriate care. There is no clear framework to help people understand the risks and benefits of available treatment options in Canada. Some treatments for refractory angina are invasive, while others are not covered by provincial health insurance plans. Effective care for refractory angina sufferers in Canada is critically underdeveloped; it is important that healthcare professionals and refractory angina sufferers alike understand the treatment options and their implications. This proposal builds on the recent Canadian practice guidelines for the management of refractory angina. We propose to develop a decision support tool in order to help people suffering from refractory angina make well-informed decisions about their healthcare and reduce their uncertainty about treatment options.
This project will be conducted in three phases: a) development of the support tool with input from clinical experts, the Canadian refractory angina guidelines, and people living with refractory angina, b) pilot testing of the usability of the tool, and c) formal preliminary evaluation of the effectiveness of the support tool to help people make informed decisions about treatment options.
A decision support tool for refractory angina is needed and the available data suggest that by developing such a tool, we may be able to help refractory angina sufferers better understand their condition and the effectiveness of available treatment options (in their respective clinical settings) as well as their implications (e.g. risks vs. benefits). By virtue of this tool, we may also be able to facilitate identification and inclusion of patients' values and preferences in the decision making process. This is particularly important as refractory angina is an intractable condition, necessitating that the selected course of treatment be lifelong. This study will yield a much needed patient decision aid for people living with refractory angina and pilot data to support a subsequent effectiveness study.
难治性心绞痛是一种严重的慢性疾病，定义为通常的心脏病治疗无法控制的心绞痛。这种疾病令人恐惧、使人虚弱，难以控制。许多患有难治性心绞痛的人疼痛缓解不足，不断到急诊室寻求帮助，反复进行心脏检查，并难以获得适当的护理。加拿大没有明确的框架来帮助人们了解可用治疗方案的风险和益处。一些难治性心绞痛的治疗方法具有侵入性，而另一些则不在省级医疗保险计划范围内。加拿大对难治性心绞痛患者的有效护理严重不足；医疗保健专业人员和难治性心绞痛患者都了解治疗方案及其影响非常重要。本提案建立在最近加拿大难治性心绞痛管理实践指南的基础上。我们建议开发一个决策支持工具，以帮助患有难治性心绞痛的人就其医疗保健做出明智的决策，并减少他们对治疗方案的不确定性。
该项目将分三个阶段进行：a）在临床专家、加拿大难治性心绞痛指南和难治性心绞痛患者的输入下开发支持工具，b）测试工具的可用性，c）正式初步评估支持工具帮助人们就治疗方案做出明智决策的有效性。
需要一种难治性心绞痛的决策支持工具，并且现有数据表明，通过开发这样的工具，我们也许能够帮助难治性心绞痛患者更好地了解他们的病情和可用治疗方案的有效性（在各自的临床环境中）以及它们的影响（例如，风险与收益）。通过该工具，我们也许还能够促进识别和纳入患者的价值观和偏好在决策过程中。这一点尤其重要，因为难治性心绞痛是一种难以治愈的疾病，需要终身选择治疗方案。这项研究将为难治性心绞痛患者提供急需的患者决策辅助工具，并提供试点数据来支持随后的有效性研究。
