Alonso Juan Pedro, Ini Natalí, Villarejo Agustina, Belizán María, Roberti Javier
Institute for Clinical Effectiveness and Health Policy (IECS), Buenos Aires, Argentina.
Gino Germani Institute, CONICET, Buenos Aires, Argentina.
Disabil Rehabil. 2025 Apr;47(7):1828-1835. doi: 10.1080/09638288.2024.2385732. Epub 2024 Jul 29.
To examine the burden of treatment (BoT) experienced by people with Amyotrophic Lateral Sclerosis (ALS) in Argentina.
Qualitative methodological design based on semi-structured interviews. Nineteen semi-structured interviews were conducted (PwALS = 7, informal caregivers= 12). The interview guides were designed based on the literature and BoT theory. Data were analysed following a framework analysis approach.
The research highlighted the arduous journey toward obtaining a diagnosis, marked by delays influenced by healthcare system inefficiencies, lack of disease awareness and pandemic-related anxiety. Receiving the diagnosis was a destabilising experience, triggering the need to reframe self-identity, a new reality. As the disease progressed, patients encountered significant challenges in their daily activities and basic tasks, affecting their ability to work, communicate, and manage personal care. The burden extended beyond the patients to their primary caregivers. Access to specialised care, bureaucratic complexities in securing treatment, and the financial impact of managing the disease posed substantial challenges.
The findings offer valuable insights into the experiences of PwALS and their caregivers in Argentina. They underscore the need for increased disease awareness, improved access to specialised care, and enhanced support networks to alleviate the burdens PwALS and their families face.
研究阿根廷肌萎缩侧索硬化症（ALS）患者所经历的治疗负担（BoT）。
基于半结构化访谈的定性方法设计。进行了19次半结构化访谈（ALS患者 = 7名，非正式照料者 = 12名）。访谈指南基于文献和治疗负担理论设计。采用框架分析方法对数据进行分析。
该研究突出了获得诊断的艰难历程，其特点是受到医疗系统效率低下、疾病认知不足和大流行相关焦虑影响而出现延误。得到诊断是一次令人不安的经历，引发了重新构建自我认同这一需求，即面对一个新的现实。随着疾病进展，患者在日常活动和基本任务中遇到重大挑战，影响了他们工作、沟通和自理的能力。负担不仅落在患者身上，还延伸到他们的主要照料者。获得专科护理、获取治疗过程中的官僚主义复杂性以及应对疾病的经济影响都带来了重大挑战。
研究结果为了解阿根廷ALS患者及其照料者的经历提供了宝贵见解。它们强调需要提高疾病认知、改善专科护理的可及性以及加强支持网络，以减轻ALS患者及其家庭面临的负担。
