Non-cancer-related lower limb lymphoedema in complex decongestive therapy: the patient experience

Abstract

Objective: Lymphoedema is a debilitating condition that results in the swelling of one or more limbs, leading to a significant impairment of mobility. From a psychosocial perspective, body image and quality of life (QoL) are also adversely affected. To date, non-cancer lymphoedema has been under-researched. The primary objectives of this study were to explore QoL and limb volume in patients with primary and secondary non-cancer-related lower limb lymphoedema during the intensive, maintenance and self-care phases of complex decongestive therapy over a 24-week period. Secondary objectives included exploring patients' experiences of living with lymphoedema and the challenges of self-care maintenance. Method: A sequential mixed methodology, using quantitative and qualitative methods, was used. The quantitative part of the study involved the use of tape measurements at 4cm intervals to ascertain limb volume alterations. Measurements were taken during the intensive phase at weeks 1, 2, 3 and 4; and during the maintenance phase at weeks 8, 16 and 24. QoL was measured using the lymphoedema QoL (LYMQOL) leg, at baseline and weeks 8 and 24. The qualitative part of the study involved the use of semi-structured interviews with patients at week 8. Interviews explored the experiences of patients living with lymphoedema and their experiences of complex decongestive therapy. Results: A total of 20 patients were recruited, two male and 18 female, with a mean age of 58.8 years (standard deviation (SD): 16 years), and all receiving complex decongestive therapy. At baseline, for all patients, the mean QoL score was 4.3 (SD: 2.4); and 8 (SD: 1.5) after 8 weeks of complex decongestive therapy. Mean difference was 4.00 (95% confidence interval: 2.76–5.24; p=0.00001) indicating a positive treatment effect. Limb volume measurements demonstrated a reduction in oedema from baseline to week 8. However, there were fluctuations in limb volume over the maintenance period of four months after treatment as the patients endeavoured to engage in self-care. Analysis of the interviews identified themes pertaining to lack of knowledge of lymphoedema among health professionals, a negative impact of living with lymphoedema and the positive therapeutic effect of complex decongestive therapy. Conclusion: Lower limb lymphoedema is a chronic condition that impacts negatively on the individual. Complex decongestive therapy improves QoL and reduces oedema. However, given the fluctuations in oedema post-treatment, individuals need greater support to maintain active engagement in effective self-care strategies.