Comparing the experience of individuals with primary and secondary lymphoedema: A qualitative study

Abstract

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.