慢性阻塞性肺疾病（COPD）患者的未满足需求：一项针对患者和医生的定性研究。
Unmet needs of patients with chronic obstructive pulmonary disease (COPD): a qualitative study on patients and doctors.
机构信息
Department of Primary Care Medicine, University of Malaya Primary Care Research Group (UMPCRG), Faculty of Medicine, University of Malaya, Kuala Lumpur 50603, Malaysia.
出版信息
BMC Fam Pract. 2014 Apr 16;15:67. doi: 10.1186/1471-2296-15-67.
BACKGROUND
Chronic Obstructive Pulmonary Disease (COPD) is a chronic disease with repeated exacerbations resulting in gradual debilitation. The quality of life has been shown to be poor in patients with COPD despite efforts to improve self-management. However, the evidence on the benefit of self-management in COPD is conflicting. Whether this could be due to other unmet needs of patients have not been investigated. Therefore, we aimed to explore unmet needs of patients from both patients and doctors managing COPD.
METHODS
We conducted a qualitative study with doctors and patients in Malaysia. We used convenience sampling to recruit patients until data saturation. Eighteen patients and eighteen doctors consented and were interviewed using a semi-structured interview guide. The interviews were audio-recorded, transcribed verbatim and checked by the interviewers. Data were analysed using a thematic approach.
RESULTS
The themes were similar for both the patients and doctors. Three main themes emerged: knowledge and awareness of COPD, psychosocial and physical impact of COPD and the utility of self-management. Knowledge about COPD was generally poor. Patients were not familiar with the term chronic obstructive pulmonary disease or COPD. The word 'asthma' was used synonymously with COPD by both patients and doctors. Most patients experienced difficulties in their psychosocial and physical functions such as breathlessness, fear and helplessness. Most patients were not confident in self-managing their illness and prefer a more passive role with doctors directing their care.
CONCLUSIONS
In conclusion, our study showed that knowledge of COPD is generally poor. There was mislabelling of COPD as asthma by both patients and physicians. This could have resulted in the lack of understanding of treatment options, outcomes, and prognosis of COPD. The misconception that cough due to COPD was contagious, and breathlessness that resulted from COPD, had important physical and psychosocial impact, and could lead to social isolation. Most patients and physicians did not favour self-management approaches, suggesting innovations based on self-management may be of limited benefit.
背景
慢性阻塞性肺疾病（COPD）是一种慢性病，反复发作会导致逐渐衰弱。尽管努力改善自我管理，但 COPD 患者的生活质量仍然很差。然而，COPD 自我管理获益的证据存在争议。这是否可能是由于患者的其他未满足需求尚未得到调查。因此，我们旨在探索管理 COPD 的患者和医生对患者的未满足需求。
方法
我们在马来西亚进行了一项定性研究，涉及医生和患者。我们使用便利抽样招募患者，直到数据饱和。18 名患者和 18 名医生同意并使用半结构化访谈指南进行了访谈。访谈进行了录音、逐字记录并由访谈者检查。使用主题方法进行数据分析。
结果
患者和医生的主题相似。出现了三个主要主题：COPD 的知识和意识、COPD 的心理社会和身体影响以及自我管理的效用。对 COPD 的了解普遍较差。患者不熟悉慢性阻塞性肺病或 COPD 这两个术语。患者和医生都将“哮喘”一词与 COPD 同义使用。大多数患者在心理社会和身体功能方面都存在困难，例如呼吸困难、恐惧和无助。大多数患者对自我管理疾病没有信心，更倾向于被动接受医生指导他们的护理。
结论
总之，我们的研究表明，对 COPD 的了解普遍较差。患者和医生都将 COPD 误诊为哮喘。这可能导致对 COPD 的治疗选择、结果和预后缺乏了解。由于 COPD 引起的咳嗽是传染性的，以及 COPD 引起的呼吸困难对身体和心理都有重要影响，并可能导致社交孤立的误解，导致了患者和医生的误解。大多数患者和医生都不赞成自我管理方法，这表明基于自我管理的创新可能受益有限。
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