Getting Help During Active Pain Crises in Sickle Cell Disease: Patient and Caregiver Perspectives in Canada

<b>What is this summary about?</b> This is a plain language summary of an article originally published in <i>Patient Preference and Adherence</i>. This study aimed to identify the notable symptoms and impacts of sickle cell disease from the point of view of individuals living with sickle cell disease and their caregivers. The study also sought to understand the factors involved in individuals living with sickle cell disease’ and caregivers’ decisions and preferences if and when they seek care during a pain crisis. This summary describes: the <b>symptoms experienced</b> by adolescents and adults living with sickle cell disease and their severity; the <b>treatments</b> they and their caregivers prefer to use when they are experiencing a pain crisis; and the <b>factors</b> that go into deciding when and whether individuals living with sickle cell disease and their caregivers should seek outside help -- to go to a hospital, for example - during a pain crisis. <b>What were the results?</b> Individuals living with sickle cell disease undergoing an acute pain crisis and their caregivers consider many factors when deciding whether to seek care at a medical facility. These include:
The intensity of their symptomsIf the facility has a treatment plan for them already in placeIf the facility has long wait timesIf the facility has an understanding and compassionate staffThe individual's age and ability to manage their daily responsibilities
The intensity of their symptoms If the facility has a treatment plan for them already in place If the facility has long wait times If the facility has an understanding and compassionate staff The individual's age and ability to manage their daily responsibilities Racial bias, shown in the actions and lack of empathy of Emergency Department staff toward individuals living with sickle cell disease, frequently factored into the individuals' and caregivers’ decision-making and hinders their ability to get the treatment needed during a pain crisis. <b>What do the results mean?</b> There is a need for a unified care team at medical facilities that treats all individuals living with sickle cell disease with the same high level of empathy and treatment quality and for a strong support system for individuals living with sickle cell disease outside of the hospital or clinic. <b>This is an abstract of the Plain Language Summary of Publication article.</b> View the full Plain Language Summary PDF of this article to read the full-text Link to original article here

【本摘要的主题是什么？】本文为发表于《患者偏好与依从性（Patient Preference and Adherence）》期刊的一篇学术文章的通俗语言摘要。本研究旨在从镰状细胞病（sickle cell disease）患者及其照料者的视角，明确该疾病的典型症状与疾病负担。此外，本研究还试图探究镰状细胞病患者及照料者在疼痛危象（pain crisis）发作时，寻求医疗救治的决策逻辑与偏好倾向的相关影响因素。本摘要涵盖以下内容：镰状细胞病青少年与成年患者及其照料者所经历的症状表现及严重程度；患者与照料者在疼痛危象发作时偏好采用的治疗方案；以及镰状细胞病患者及照料者在疼痛危象发作时，决定是否寻求外部医疗帮助（例如前往医院）的相关决策考量因素。【研究结果如何？】镰状细胞病急性疼痛危象患者及其照料者在决定是否前往医疗机构就诊时，会综合考量诸多因素，具体包括：症状严重程度、医疗机构是否已为其制定专属治疗方案、医疗机构候诊时长是否过长、医疗机构医护人员是否具备共情与同理心、患者年龄及日常事务自理能力。此外，急诊科（Emergency Department）医护人员针对镰状细胞病患者表现出的种族偏见与共情缺失，亦会频繁介入患者与照料者的决策过程，阻碍其在疼痛危象发作时获得亟需的治疗。【研究结果有何启示？】医疗系统亟需构建统一的照护团队，为所有镰状细胞病患者提供同等高质量的共情照护与诊疗服务；同时，也亟需为镰状细胞病患者搭建医院、诊所之外的完善院外支持体系。【本文为该文章通俗语言摘要的摘要版】如需查看本文的完整通俗语言摘要PDF及原文全文，请点击此处原文链接。