Actual needs of patients with amyotrophic lateral sclerosis: a qualitative study from Wuhan, China

• DOI: 10.1186/s12904-025-01684-8
• Publication Date: 2025-02-22T11:03:33Z
• Authors: Lijuan Zeng; Fen Yang; Dandan Xu; Jing Zhou; Guiyuan Qiao; Man Wu; Chaoyang Li; Yiqing Yu; Yufei Qiu; Jiali Liu
• Keywords: Pain medicine

Amyotrophic Lateral Sclerosis (ALS) is a progressive and fatal neurodegenerative disorder that significantly impacts individuals families. Previous research on ALS has predominantly focused its pathophysiology, genetic factors, potential therapeutic interventions. While these aspects are essential for understanding treating the disease, there been growing recognition of importance studying patients' actual needs. Understanding needs vital developing patient-centered care models can enhance well-being patients. However, existing studies often limited in scope. Many conducted Western countries, results may not be directly applicable to patients other cultural socioeconomic contexts. China, with large population diverse cultural, economic, healthcare landscapes, presents unique setting At same time, traditional Chinese medicine (TCM) practices deeply ingrained their system affect way people seek treatment manage condition. Therefore, differences lead China. In conclusion, this qualitative study China aims bridge gap research. By exploring needs, it provide valuable insights providers, policymakers, researchers, ultimately contributing improvement quality life We carried out using an empirical phenomenological approach. Individual in-depth interviews were performed among 22 from motor neuron disease rehabilitation center tertiary hospital interview content was analyzed qualitatively. Interview recordings converted text by NVivo 11.0 software Colaizzi's method. Three main themes identified study: (1) Demand services, (2) Emotional requirements, (3) Functional requirements. addition, 8 sub-themes extracted as This based real experience after diagnosis, deep experiences explore many give reasonable advice help. Given particularity uncertainty treatment, will have practical relevant medical support, emotional physical functions, during period illness, corresponding support effective measure reduce burden