Background

Lymphoedema is a chronic condition that has significant detrimental impact on patients’ quality of life. Secondary lymphoedema often results from anti-tumour treatment, in contrast to primary lymphoedema which is the result of genetic abnormalities that leads to an abnormal development of the lymphatic system.

Objective

To describe and compare the experience of individuals with primary and secondary lymphoedema.

Methods

A total of 19 patients (mean ± standard deviation age: 56.7 ± 16.2 years), 8 with primary and 11 with secondary lymphoedema, participated in this qualitative phenomenological study. Purposeful sampling method was applied. We recruited participants from specialised lymphoedema units of two physical therapy clinics and the Lymphoedema Patient Association in Spain. Data collection methods included unstructured and semi-structured interviews. An inductive thematic analysis was used.

Results

The findings suggest differences between the experience of living with primary or secondary lymphoedema. Also, those with lower extremity lymphoedema have more pain, fatigue, and functional limitations. Three primary themes emerged: “Emotional challenge”, “Adapting your life to a new situation,” and “lymphoedema management”.

Conclusions

The experience of living with lymphoedema involves aspects of fear, suffering, coping, and management of the disease and differs between secondary and primary causes. However, it seems to be more dependent on its location than its cause.

中文翻译：

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比较原发性和继发性淋巴水肿患者的经历：一项定性研究

背景

淋巴水肿是一种慢性疾病，对患者的生活质量有显着的不利影响。继发性淋巴水肿通常由抗肿瘤治疗引起，与原发性淋巴水肿相反，原发性淋巴水肿是遗传异常导致淋巴系统发育异常的结果。

客观的

描述和比较患有原发性和继发性淋巴水肿的个体的经历。

方法

共有 19 名患者（平均±标准差年龄：56.7±16.2 岁），其中 8 名患有原发性淋巴水肿，11 名患有继发性淋巴水肿，参与了这项定性现象学研究。采用有目的的抽样方法。我们从两个物理治疗诊所和西班牙淋巴水肿患者协会的专门淋巴水肿部门招募了参与者。数据收集方法包括非结构化和半结构化访谈。使用了归纳主题分析。

结果

研究结果表明，原发性或继发性淋巴水肿的生活经历存在差异。此外，患有下肢淋巴水肿的患者会有更多的疼痛、疲劳和功能受限。出现了三个主要主题：“情绪挑战”、“让您的生活适应新情况”和“淋巴水肿管理”。

结论

与淋巴水肿一起生活的经历涉及恐惧、痛苦、应对和疾病管理等方面，并且在次要原因和主要原因之间有所不同。然而，它似乎更依赖于它的位置而不是它的原因。