Insights from lymphoedema healthcare professionals managing lipalgia syndrome (lipoedema): a service evaluation.

Abstract

Background: Lipalgia syndrome, also known as lipoedema, is a chronic condition involving disproportionate adipose tissue accumulation with pain and tenderness.

Aim: This study explores the perceptions, challenges and needs of lymphoedema healthcare professionals supporting and managing patients with lipalgia syndrome/lipoedema in Wales.

Methods: A service evaluation was conducted between March and June 2024, involving six face-to-face and one online session. Sixty registered and non-registered healthcare practitioners (HCPs) working in lymphoedema services across Wales participated in the evaluation.

Results: Thematic analysis revealed challenges in differential diagnosis, gaps in evidence-based resources and emotional impact on practitioners. Key findings include HCPs feeling inadequate because of perceived limited treatment options and feeling unable to meet perceived patient expectations. However, increased empathy and transparent communication were identified as crucial for enhancing care delivery.

Conclusions: The study highlights the need for standardised diagnostic tools, evidence-based guidelines and interdisciplinary collaboration to support effective and empathetic care.