Addition of Lymphatic Stimulating Self-Care Practices Reduces Acute Attacks among People Affected by Moderate and Severe Lower-Limb Lymphedema in Ethiopia, a Cluster Randomized Controlled Trial

Lymphedema causes disability and exacerbates poverty in many countries. The management of lymphatic filariasis (LF) and podoconiosis-related lymphedema involves daily hygiene to reduce secondary infections, but self-massage and deep-breathing, which have proven beneficial in cancer-related lymphedema, are not included. A cluster randomized trial in northern Ethiopia investigated the effects of lymphatic stimulation for people affected by moderate to severe lymphedema. Participants were allocated to either standard (control n = 59) or enhanced (intervention n = 67) self-care groups. Primary outcomes were lymphedema stage, mid-calf circumference, and tissue compressibility. Secondary outcomes were the frequency and duration of acute attacks. After 24 weeks, fewer patients were assessed as severe (control -37.8%, intervention -42.4%, p = 0.15) and there were clinically relevant changes in mid-calf tissue compressibility but not circumference. There was a significant between-group difference in patients who reported any acute attacks over the study period (control n = 22 (38%), intervention n = 7 (12%), p = 0.014). Daily lymphedema self-care resulted in meaningful benefits for all participants with a greater reduction in acute episodes among people performing lymphatic stimulation. Observations of a change in lymphedema status support earlier findings in Bangladesh and extend the demonstrated benefits of enhanced self-care to people affected by podoconiosis

Insights on Lymphedema Self-Care Knowledge and Practice in Filariasis and Podoconiosis-Endemic Communities in Bangladesh and Ethiopia

Lymphedema is a life-long sequelae to several neglected tropical diseases (NTD). In Bangladesh the main cause is lymphatic filariasis (LF) and Ethiopia is endemic for both LF and podoconiosis. The World Health Organization (WHO) recommends daily self-care including meticulous washing and drying of affected skin and attention to entry lesions, limb exercises and elevation. Adherence to this regime reduces secondary infections which cause disabling episodes of acute dermato-lymphangitis (ADL). Self-care practices must be integrated into family life, supported by community and monitored by health staff; however, little is known about the influence of personal and socio-demographic factors on adherence. People affected by lymphedema (n=272), adult caregivers (n=272), and health workers (n=68) in Bangladesh and Ethiopia were trained in lymphedema management according to WHO recommendations. Surveys on the causes and management of lymphedema were collected at baseline and 24-weeks, and patients completed a daily journal of self-care activities and symptoms. At baseline knowledge on causes and management of lymphedema was greater among health workers (&amp;gt;70%) than patients and caregivers (&amp;lt;20%) in both countries, and there were significant between-country differences in patient reported use of limb washing (Bangladesh = 7.7%. Ethiopia = 51.1%, p = 0.001). At 24-weeks knowledge on lymphedema causes and management had increased significantly among patients and caregivers, there was &amp;lt;70% adherence to limb washing and exercises, but lesser use of limb elevation in both countries. A range of patient characteristics were associated with significant variation in self-care, except for limb washing. Performance of fewer leg exercises was significantly associated with increased age or severe lymphedema in Bangladesh, and with being female or in paid work in Ethiopia. Patient journals recorded ADL symptoms and working days lost due to lymphedema more frequently than were reported by recall during the 24-week survey. Core elements of lymphedema self-care education, training and monitoring are the same for multiple etiologies. This creates opportunities for cross-cutting implementation of integrated service delivery across several skin NTDs. Sustainability will depend on community level ownership and research on factors affecting adherence to lymphedema self-care are urgently needed.</jats:p

Intra-Rater Reliability and Agreement of the Indurometer When Used to Assess Mid-Calf Tissue Compressibility Among People Affected by Moderate to Severe Lymphedema in Bangladesh and Ethiopia

Background: Lymphedema is a chronic skin disease that induces tissue fibrosis (stiffness). Tissue tonometry has been used to assess skin and tissue compressibility in lymphedema, primarily in research on arm lymphedema after breast cancer. A digital tonometer, the Indurometer (Flinders and SA Biomedical Engineering, Australia), has shown excellent intra-rater reliability in young healthy people in Australia and Myanmar and was able to detect covert changes in young, asymptomatic Myanmar people infected with lymphatic filariasis. It has not been tested in overt lower-limb lymphedema. Methods and Results: The Indurometer was used in a cluster randomized trial in Bangladesh and Ethiopia to measure tissue compressibility among adults affected by moderate to severe lymphatic filariasis- or podoconiosis-related leg lymphedema. The study compared different self-care intervention and after baseline there were follow-ups at 4, 12, and 24 weeks. Three consecutive Indurometer scores were collected by two data collection teams in each country at the mid-calf of each leg. Indurometer scores were available for three timepoints in Bangladesh and four time-points in Ethiopia. An intra-class correlation coefficient (ICC) was calculated for each data collection team, and a coefficient of variation (CV) was used to assess measurement agreement in moderate and severe stages of lymphedema. The intra-rater reliability among local research assistants was good to excellent in both countries at all time-points (ICC range 0.829 [95% confidence interval; CI 0.730–0.896]-0.992 [95% CI 0.989–0.995]). In Bangladesh, agreement between measures was highest among unaffected legs (range 16%–22%) and lowest in severe lymphedema (range 19%–39%). CV scores in Ethiopia showed no distinct pattern for lymphedema stage (range 15%–32%). Conclusion: The Indurometer is an inexpensive and easy-to-use device to assess skin and tissue compressibility and should be considered in clinical research on lower-limb lymphedema