Department of Psychology and Sociology of Health and Public Health, School of Public Health, Collegium Medicum of the University of Warmia and Mazury, Olsztyn, Poland.
Instytut Terapii Komórkowych S.A., Olsztyn, Poland.
Neurol Sci. 2022 Jul;43(7):4257-4265. doi: 10.1007/s10072-022-05931-1. Epub 2022 Feb 12.
Amyotrophic lateral sclerosis (ALS) is a rare, incurable, and fatal neurodegenerative disease with median survival time from onset to death ranging from 20 to 48 months. Breaking bad news about ALS diagnosis is a challenging task for physicians and a life-changing experience for patients. Several protocols for delivering difficult information are available, including SPIKES and EMPATHY. Our goal was to assess to what extent these guidelines are followed in Polish ALS patients' experience as well as to identify any other patients' preferences not addressed by the guidelines. Participants of our study were recruited via a neurology clinic. Twenty-four patients with confirmed ALS diagnosis were interviewed using in-depth interview and a self-constructed questionnaire: 9 females, 15 males in age ranging from 30-39 to 60-69. The analysis showed a pattern of shortcomings and fundamental violations of available protocols reported by ALS patients. Patients also had to deal with therapeutic nihilism, as they were perceived as "hopeless cases"; unlike in oncological setting, their end-of-life needs were not accommodated by some standard schemes. As a conclusion, we recommend using extended breaking bad news protocols with special emphasis on preparing a treatment plan, giving the patient hope and sense of purpose, offering psychological support and counselling directed to patients and caregivers, and providing the patient with meaningful information about the disease, social support, treatment options, and referral to appropriate health care centres.
肌萎缩侧索硬化症（ALS）是一种罕见的、无法治愈的、致命的神经退行性疾病，从中风到死亡的中位生存时间为 20 至 48 个月。向患者通报肌萎缩侧索硬化症的诊断是医生面临的一项挑战，也是患者人生的重大转折点。目前有几种传递困难信息的方案，包括 SPIKES 和 EMPATHY。我们的目标是评估这些指南在波兰肌萎缩侧索硬化症患者的体验中得到了多大程度的遵循，并确定这些指南没有涉及的任何其他患者偏好。我们的研究参与者是通过神经病学诊所招募的。使用深度访谈和自我构建的问卷对 24 名确诊为肌萎缩侧索硬化症的患者进行了访谈：9 名女性，15 名男性，年龄从 30-39 岁到 60-69 岁不等。分析显示，肌萎缩侧索硬化症患者报告了现有协议存在的模式缺陷和根本违反情况。患者还必须面对治疗虚无主义，因为他们被视为“无望病例”；与肿瘤学环境不同，他们的临终需求没有得到一些标准方案的满足。因此，我们建议使用扩展的通报坏消息协议，特别强调制定治疗计划，给予患者希望和目标感，为患者和照顾者提供心理支持和咨询，并向患者提供有关疾病、社会支持、治疗选择和转介到适当的医疗中心的有意义的信息。
