Hu Xianjing, Wei Mingyu, Zhang Heli, Yu Miao, Wang Mingxuan, Zhou Baohua, Luo Yongmei, Li Baohua
Department of Nursing, Peking University Third Hospital, Beijing, 100191, China.
Department of Cardiology and Institute of Vascular Medicine, Peking University Third Hospital, Beijing, 100191, China.
Sci Rep. 2025 Mar 25;15(1):10183. doi: 10.1038/s41598-025-93270-4.
ALS is a progressive neurodegenerative disease that has a serious impact on patients and their caregivers. For a long time in the past, ALS was considered a painless disease that was largely ignored by clinicians. Describing the complexity and needs of pain symptoms from the perspective of patients can provide the most intuitive direction for future research. The purpose of our research is to explore the experience of pain symptoms in patients with amyotrophic lateral sclerosis (ALS), provide reference for better understanding of pain symptoms in ALS patients. From April 2023 to May 2023, 27 patients experiencing pain symptoms in Peking University Third Hospital who met the diagnostic criteria of "Chinese Guidelines for the Diagnosis and Treatment of amyotrophic lateral sclerosis" were interviewed by means of objective sampling. The content analysis method was used to describe the pain changes since the disease (amyotrophic lateral sclerosis), the factors that aggravate the pain, the measures to cope with the pain and the needs. The interview results included 3 themes and 11 subthemes. (1) Pain is diverse: the type of pain, the time when pain occurs, the change in pain intensity, and the factors that aggravate pain; (2) Individualized pain coping measures: posture adjustment, medication, physical therapy, warmth, emotional regulation; (3) Patients lack of understanding of pain: insufficient source of knowledge, the single orientation of the solution. The nature, location and aggravating factors of pain in amyotrophic lateral sclerosis patients in China are complicated, which should be paid attention to by clinical staff and scientific researchers. The situation of pain management is not optimistic, and the pain of the vast majority of patients has not been effectively alleviated. It is necessary to realize the importance of self-management and care of others in coping with pain, and conduct further research in the future to find a breakthrough in pain relief, so as to strengthen pain intervention in clinical practice.
肌萎缩侧索硬化症（ALS）是一种进行性神经退行性疾病，对患者及其护理人员有严重影响。在过去很长一段时间里，ALS被认为是一种无痛疾病，在很大程度上被临床医生忽视。从患者角度描述疼痛症状的复杂性和需求可为未来研究提供最直观的方向。我们研究的目的是探索肌萎缩侧索硬化症（ALS）患者疼痛症状的体验，为更好地理解ALS患者的疼痛症状提供参考。2023年4月至2023年5月，采用客观抽样的方法，对北京大学第三医院27例符合“中国肌萎缩侧索硬化症诊断与治疗指南”诊断标准且有疼痛症状的患者进行访谈。采用内容分析法描述自疾病（肌萎缩侧索硬化症）以来的疼痛变化、加重疼痛的因素、应对疼痛的措施及需求。访谈结果包括3个主题和11个子主题。（1）疼痛具有多样性：疼痛类型、疼痛发生时间、疼痛强度变化及加重疼痛的因素；（2）个性化的疼痛应对措施：姿势调整、药物治疗、物理治疗、保暖、情绪调节；（3）患者对疼痛缺乏认识：知识来源不足、解决问题的方向单一。我国肌萎缩侧索硬化症患者疼痛的性质、部位及加重因素较为复杂，应引起临床工作人员和科研人员的重视。疼痛管理情况不容乐观，绝大多数患者的疼痛未得到有效缓解。有必要认识到自我管理和他人护理在应对疼痛中的重要性，未来开展进一步研究以找到缓解疼痛的突破口，从而加强临床实践中的疼痛干预。
