关键词: 肌萎缩侧索硬化症；患者；照顾者；居家护理；调查；需求

Abstract: Objective: To investigate the knowledge needs of home care in patients with Amyotrophic Lateral Sclerosis and care needs from their primary caregivers. Methods: From June 2020 to May 2021, eligible patients with Amyotrophic Lateral Sclerosis and their primary caregivers in a tertiary grade A hospital in Beijing were included in this study following convenient sampling. Information about patients and their primary caregivers were collected using questionnaires, and their care needs were collected using the home care knowledge demand questionnaire. Results: A total of 203 valid questionnaires were collected during the study period, including 101 patients with Amyotrophic Lateral Sclerosis and 102 primary caregivers. There were 23.76% an 25.49% of ALS patients and their primary caregivers participated in home care knowledge training, respectively. Based on participants' response, the main method in acquiring home care knowledge was online resources, followed by medical staff. Compared with patients with Amyotrophic Lateral Sclerosis, the primary caregivers had a higher demand for home care knowledge training (P=0.032), with "respiratory care" being scored as the highest. Meanwhile, patients with ALS and their primary caregivers reported that they preferred to acquire knowledge through video playback first, followed by WeChat public account/ WeChat group. Conclusion: ALS patients and their primary caregivers have a high demand for knowledge on home care. It is recommended that relevant departments should increase the dissemination of health education on home care knowledge, especially contents on respiratory home care, which can be conducted through video or Wechat public account/ Wechat group and other methods to meet patients' needs.

Key words: Amyotrophic Lateral Sclerosis; patient; caregiver; home care; survey; needs