慢性阻塞性肺疾病(COPD)和哮喘患者在整个就医过程中的支持需求:一项定性研究
Support Needs of Patients with Chronic Obstructive Pulmonary Disease (COPD) and Asthma Throughout Their Patient Journey: A Qualitative Study.
作者信息
Almonacid Carlos, Gómez Raquel, Morán Ignacio, Muerza Irantzu, Pastor Mariano, Garcia-Esparcia Paula, García Elena, Soria Cristina, Lázaro Esther, Querol Dolors
机构信息
Departamento de Neumología, Hospital Puerta de Hierro Majadahonda, Madrid, España.
Asociación Sevilla Respira, Sevilla, España.
出版信息
Int J Chron Obstruct Pulmon Dis. 2025 Jul 28;20:2639-2658. doi: 10.2147/COPD.S526548. eCollection 2025.
PURPOSE
Chronic respiratory diseases, such as chronic obstructive pulmonary disease (COPD) and asthma, pose a significant health risk due to the increasingly pronounced rise in its prevalence, associated complications and impact on patients' quality of life. The aim of this study is to analyse the needs of patients with COPD and asthma throughout their patient journey.
PATIENTS AND METHODS
To this end, a qualitative and cross-sectional study was conducted based on interviews and focus groups. 28 people took part, including patients, relatives and representatives of patient associations, and they were selected to ensure a diversity of perspectives. The data collected were analyzed by two psychologists with experience in qualitative research, who conducted thematic analysis and made use of data saturation criteria.
RESULTS
The results emphasize that patient needs vary according to the stage of the disease. In the initial stage, patients find it difficult to identify symptoms and risk factors, and demand education on basic concepts and self-care strategies. When diagnosed, they require psycho-emotional support and training on the disease. Insufficient information, particularly concerning the use of inhalers and the different therapies, is a recurrent obstacle in treatment and monitoring. Furthermore, therapeutic nonadherence is affected by factors such as perception of the severity of the disease, related to the treatment and deficiencies in inhaler technique. Additionally, pulmonary rehabilitation and multidisciplinary care are unmet needs that have an impact on patients' quality of life.
CONCLUSION
The study highlights the importance of personalizing interventions according to the stage of the patient journey, combining education, disease coping strategies and comprehensive monitoring. Patient groups play a key role as they are a source of emotional support, guidance and self-care. In conclusion, a proposal is made for a patient-centred approach that promotes self-management, equitable access to resources and coordination between healthcare teams to optimise integrated care in respiratory diseases. In this respect, it seems relevant and appropriate to develop training environments for patients diagnosed with asthma/COPD and their carers, where information and training are offered to support good disease management in the different stages of the patient journey.
目的
慢性呼吸道疾病,如慢性阻塞性肺疾病(COPD)和哮喘,因其患病率、相关并发症日益显著上升以及对患者生活质量的影响,构成了重大的健康风险。本研究的目的是分析COPD和哮喘患者在整个就医过程中的需求。
患者与方法
为此,基于访谈和焦点小组开展了一项定性和横断面研究。28人参与其中,包括患者、亲属及患者协会代表,他们的选取确保了观点的多样性。收集到的数据由两名具备定性研究经验的心理学家进行分析,他们进行了主题分析并运用了数据饱和标准。
结果
结果强调患者需求因疾病阶段而异。在初始阶段,患者难以识别症状和风险因素,需要关于基本概念和自我护理策略的教育。确诊后,他们需要心理情感支持和关于疾病的培训。信息不足,尤其是关于吸入器的使用和不同疗法的信息,是治疗和监测中反复出现的障碍。此外,治疗依从性受到诸如对疾病严重程度的认知、与治疗相关的因素以及吸入器技术缺陷等因素的影响。此外,肺康复和多学科护理是未得到满足的需求,对患者生活质量有影响。
结论
该研究强调了根据患者就医阶段个性化干预的重要性,将教育、疾病应对策略和全面监测相结合。患者群体发挥着关键作用,因为他们是情感支持、指导和自我护理的来源。总之,提出了一种以患者为中心的方法,该方法促进自我管理、公平获取资源以及医疗团队之间的协调,以优化呼吸系统疾病的综合护理。在这方面,为诊断为哮喘/COPD的患者及其护理人员开发培训环境似乎是相关且合适的,在该环境中提供信息和培训以支持患者在就医不同阶段的良好疾病管理。
相似文献
Int J Chron Obstruct Pulmon Dis. 2025-7-28
Cochrane Database Syst Rev. 2016-12-19
JBI Database System Rev Implement Rep. 2016-4
Cochrane Database Syst Rev. 2017-5-23
Zhonghua Jie He He Hu Xi Za Zhi. 2025-3-12
Cochrane Database Syst Rev. 2016-10-6
Cochrane Database Syst Rev. 2017-8-4
本文引用的文献
Eur Respir Rev. 2023-9-30
Adv Respir Med. 2023-3-10
J Taibah Univ Med Sci. 2023-1-12
Tuberc Respir Dis (Seoul). 2020-10