Background

Pulmonary embolism (PE) is the third most common cause of cardiovascular death. However, comprehensive knowledge on the lived experience of patients with PE is lacking so far. The objective of this study was to fill this gap using a qualitative research approach.

Methods

A qualitative study using focus group methodology was conducted. Sampling of patients followed the maximum variation strategy. Sample size was determined by saturation. The patients were presented eight questions, which asked for their experiences in terms of prodromal and acute symptoms, changes of physical and mental well-being, daily life and social life, and experiences with PE medication and treatment. The focus group discussions were digitally recorded and transcribed verbatim. The constant comparative method was used for data analysis.

Results

Five focus groups with n = 18 participants (50% female, median age 56 years) in total were performed. Major identified themes were: (1) progressing dyspnea and pain as major prodromal and acute symptoms, (2) persisting dyspnea and loss of physical fitness, (3) depression, fears and threat monitoring, (4) exhaustion which improves over time, (5) social contacts ranging between ignorance and overprotection, (6) anticoagulants as lifesavers and threat, (7) quick versus delayed diagnosis, (8) left alone by health care providers, and (9) unsupportive health care system.

Conclusion

PE may be associated with considerable mental health problems and the existing health care system is experienced as not supportive by a number of patients. Further results from larger, quantitative studies are needed to estimate the extent of the identified problems.

中文翻译：

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肺栓塞的实际经验：使用焦点小组进行的定性研究。

背景

肺栓塞（PE）是导致心血管死亡的第三大最常见原因。然而，到目前为止，缺乏关于PE患者生活经历的全面知识。这项研究的目的是使用定性研究方法来填补这一空白。

方法

使用焦点小组方法进行了定性研究。对患者的抽样遵循最大变异策略。样品量由饱和度确定。向患者提出了八个问题，询问他们在前驱和急性症状，身心健康的变化，日常生活和社交生活以及使用PE药物和治疗方面的经验。对焦点小组的讨论进行了数字记录并逐字记录。常数比较法用于数据分析。

结果

进行了五个焦点小组，共有n = 18名参与者（女性占50％，中位年龄56岁）。所确定的主要主题是：（1）呼吸困难和疼痛以主要前驱症状和急性症状进展;（2）呼吸困难和体力丧失持续存在;（3）抑郁，恐惧和威胁监测;（4）疲劳随着时间而改善，（ 5）在无知和过度保护之间的社会交往，（6）抗凝剂可以挽救生命和威胁生命，（7）快速诊断与延迟诊断，（8）医护人员独自一人，以及（9）无支持的医疗体系。

结论

PE可能伴有严重的精神健康问题，许多患者认为现有的医疗保健系统不支持PE。需要更大范围的定量研究的进一步结果来估计已发现问题的程度。