Abstract
BACKGROUND: Secondary Lower-Limb Lymphedema (LLL) is a frequent, progressive late effect affecting women after gynaecological cancer treatment, causing swelling due to fluid accumulation in the interstitial spaces in the lower extremities, the lower abdomen, hips and genitals. There is no consensus on how to define and quantify LLL, which makes research on treatment effect difficult. A negative relation between LLL and quality of life has been reported. AIM: To review the literature concerning the identification and impact of LLL on women's lives after gynaecological cancer, including physical, psycho-social and existential aspects. METHODS: In an integrative review, as described by Whittemore & Knafl, data were thematically analysed. RESULTS: Forty-one papers published between 2003 and 2024, encompassing a total of 11,488 participants, were included. The overarching theme was limited knowledge of LLL among healthcare professionals and patients and identification discrepancies. It highlighted a widespread lack of awareness among healthcare professionals and the absence of a standardised approach to LLL assessment. This was further substantiated by the considerable heterogeneity in both diagnostic and measurement methods. Consequently, women received minimal information, experienced delayed diagnoses and had restricted access to treatment. These shortcomings had a negative impact on daily life, affecting physical and psychosocial wellbeing, as well as sexual health. The women reported unmet needs, which led them to adopt proactive approaches and various coping strategies. CONCLUSION: LLL profoundly affects women's quality of life, physical and psychosocial health and existential well-being. Lack of standardised assessment and diagnostic criteria and clear care pathways creates knowledge gaps, delays diagnosis and fragments care, while its 'homeless' status leaves responsibility unclear. Urgent systemic change is needed: research must define evidence-based strategies and policy makers should prioritise multidisciplinary centres and education, with healthcare adopting patient-centred, multidisciplinary practices to ensure timely diagnosis, referral and self-management support. TRIAL REGISTRATION: https://osf.io/jrh6c.