Imperial College London, London, UK.
Imperial College Healthcare NHS Trust, London, UK.
Dysphagia. 2022 Apr;37(2):365-374. doi: 10.1007/s00455-021-10287-3. Epub 2021 Apr 8.
Acquired laryngotracheal stenosis (LTS) is a rare condition causing dyspnea and stridor. Patients often require multiple surgical procedures with no guarantee of a definitive outcome. Difficulty swallowing is a recognised problem associated with LTS and the reconstructive surgeries required to manage the condition. The breathlessness patient's experience impacts on swallowing, and the vulnerable structures of the larynx are implicated during complex surgeries. This leads to dysphagia post-surgery, with some patients experiencing more chronic symptoms depending on the biomechanical impact of the surgery, or a pre-existing dysphagia. Despite this there is limited observational research about the dysphagia associated with LTS, with no exploration of the patient experience. Our aim was to investigate patient experience of living with LTS focussing on dysphagia in order to guide clinical practice. A qualitative study was completed using focus groups and semi-structured interviews with 24 patients who have had reconstructive surgery for LTS. Thematic analysis was used to identify three over-arching themes: The Physical Journey, The Emotional Journey and The Medical Journey. Key sub-themes included the importance of self-management and control, presence of symptoms, benefits of therapy, living with a life-long condition, fear and anxiety, autonomy, medicalisation of normal processes and the dichotomy between staff expertise and complacency. Swallowing was connected to all themes. The results are reviewed with consideration of the wider literature of lived experience particularly in relation to other chronic conditions and those that carry a high symptom burden such as head and neck cancer. Future clinical and research recommendations have been made. Akin to other clinical groups, adults with LTS are keen that management of their swallowing is person-centred and holistic.
获得性喉气管狭窄（LTS）是一种罕见的疾病，会导致呼吸困难和喘鸣。患者通常需要多次手术，但不能保证最终结果。吞咽困难是与 LTS 相关的公认问题，也是管理该病所需的重建手术的一个问题。呼吸困难患者的体验会影响吞咽，而在复杂的手术中，喉部的脆弱结构也会受到影响。这会导致手术后出现吞咽困难，一些患者由于手术的生物力学影响或先前存在的吞咽困难，会出现更慢性的症状。尽管如此，关于 LTS 相关吞咽困难的观察性研究有限，而且没有探讨患者的体验。我们的目的是调查患有 LTS 的患者的生活体验，重点关注吞咽困难，以指导临床实践。采用焦点小组和半结构式访谈的方法对 24 名接受过 LTS 重建手术的患者进行了定性研究。采用主题分析法确定了三个主要主题：身体之旅、情感之旅和医疗之旅。主要子主题包括自我管理和控制的重要性、症状的存在、治疗的益处、终身疾病的生活、恐惧和焦虑、自主性、正常过程的医学化以及员工专业知识和自满之间的二分法。吞咽与所有主题都有关联。考虑到更广泛的生活体验文献，特别是与其他慢性疾病以及那些症状负担高的疾病（如头颈部癌症）的关系，对结果进行了审查。提出了未来临床和研究建议。与其他临床群体一样，患有 LTS 的成年人希望他们的吞咽管理以患者为中心且全面。
