Literature suggests a knowledge gap concerning the detection and management of secondary lower limb lymphoedema (LLL) in women following treatment for gynaecological malignancies. Guidelines recommend detecting and treating LLL as early as possible to improve health outcomes, but there are few studies investigating the earliest symptoms of LLL in this cohort of women.
This research primarily aimed to explore the earliest detectable symptom of LLL, with a secondary aim of describing the current detection and management pathways.
The mixed methods design was comprised of a quantitative cross sectional retrospective validated questionnaire sent to 216 women treated for gynaecological cancer, followed by semi structured interviews of 10 selected consenting women, to map detection and treatment pathways. Participants were sourced from all gynaecological patients recorded in the hospital e-record database (n=1881), April 2014 to December 2015, following ethics approval. Quantitative data was de identified, coded and analysed using IBM SPSS statistics software. Thematic analysis of interviews enabled identification of common themes and rich descriptions of symptoms and management of LLL.
Data analysis of questionnaires demonstrated ankle swelling as the most common early symptom of LLL by 21.88% of questionnaire respondents (95% Confidence Interval or CI = 14.08% to 31.50%) (return rate 46.29%) and 80% of interview participants. Semi structured interview analysis identified 4 common themes: Knowledge/Education; Fear of recurrence; Coping with Symptoms and Circumstances; and Patient-Directed Management Strategies.
The study has contributed to understanding this previously unstudied private patient cohort regarding early symptoms of LLL, treatment pathways and common ongoing survivorship issues. These findings can be applied to practice, with improved timing and content of LLL education, psychological support, practical advice and evidence based patient-directed management to deliver better health outcomes regarding LLL. The valuable input from interview participants provided insight into the support and follow up required by women following treatment for gynaecological cancers.