The acronym Limprint stands for Lymphedema IMpact and PRevalence INTernational and was run under the auspices of the International Lymphedema Framework (ILF), a charity dedicated to improving provision of care globally. The primary aim was to identify the number of people with chronic edema (chronic edema present for >3 months and due to a range of underlying etiologies and associated risk factors) within diverse health services in nine participating countries and to determine its impact using validated methods. An international protocol and sampling framework, online data capture system, and standard operating procedures were adopted. An international consensus was used to create a core data tool that covered 13 domains. Specialist data on demographics and disability, details of swelling, wounds, cancer, and health-related quality of life were also available for sites. The study protocol was designed to allow flexibility in the types of studies undertaken within complex health care systems. All cases were confirmed using the modified pitting test. Sensitivity and specificity for this method were determined in Japanese and European populations. Following confirmation of a chronic edema case, Lymphologists defined whether it was a primary of a secondary form. The study was designed to provide robust evidence that chronic edema is an important and unrecognized public health problem in health services with significant morbidity. Without evidence of the size and complexity, it will remain considered a rare phenomenon and people affected will be denied access to appropriate treatment that would allow them to have fulfilled and productive lives.
This study was supported by a research grant from Smith & Nephew Ltd.
This article explores the professional challenges of treating patients with complex/severe forms of chronic oedema/lymphoedema with compression therapy. Four focus groups were held, two in the UK and two in Canada, to examine the challenges faced by practitioners in their everyday practice. A number of challenges were identified by participants in both countries and include the changing profile of lymphoedema/chronic oedema and how increasing complexity is outpacing the development of services and research-based guidelines. Focus groups also highlighted a lack of public awareness, poor professional knowledge, delayed diagnosis and inappropriate treatment as having a significant impact on practice. Other practice-related issues include a poor understanding of treatment options among practitioners, a lack of evidence-based practice as well as difficulties associated with managing psychosocial problems and of ensuring concordance with treatment. In Canada, services tend to be more rural and remote than in the UK, autonomous specialist practice is less developed and practitioners were generally less confident and felt more vulnerable than their UK colleagues. There is a need for integrated, multi-disciplinary services in both countries, with improved education and training, as well as the development of cost-effective compression bandaging systems that can make a major contribution to meeting the challenges of contemporary lymphoedema practice.
The version presented here may differ from the published version or from the version of record. If you wish to cite this item you are advised to consult the publisher's version. Please see the repository url above for details on accessing the published version and note that access may require a subscription. A randomised controlled Trial (RCT) was used to evaluate time to ulcer healing, quality of life, pain and cost effectiveness.100 patients were randomised to receive either Oxyzyme/ Iodozyme (active group) or standard care (control group) with venous or mixed arterio-venous ulcers.Patients were evaluated weekly up to 12 weeks, with further follow up at 24 weeks. Whilst there was a small benefit in terms of healing over follow up using the Cox Proportional Hazards Model, this did not achieve a standard level of statistical significance (Hazard Ratio= 1.13, 95%CI 0.64 to 2.02, p=0.67) after adjustment for confounding factors. Patients with high protease activity showed an improved and faster healing in the active group, (HR=1.35, 95%CI 0.63, 2.87)p=0.44.The active group required significantly fewer dressing changes (14.8 versus 10.0, p=0.033). Despite the dressing costs being higher, there was a significantly lower cost of nursing time, leading to a greater cost effectiveness in terms of cost per healed ulcer (£977 versus £1071. A Markov model used to assess cost effectiveness in the main trial found that the control group had slightly better outcomes (12 more ulcer free weeks), but at a substantially greater cost (£5,031). When those with high protease activity the cost in the active group dominated, with lower cost (-£2,450) and an improved outcome (29 more ulcer free weeks).Health related quality of life (HRQoL) and pain significantly improved over the assessment period, though there was no difference between the treatment groups.The use of Oxyzyme® & Iodozyme®) could provide better value for money in the management of venous and mixed arterio-venous ulcers than standard care in a community leg ulcer service.
This paper reports on a study in the UK that explored the experience of children suffering with Lymphoedema and that of their families. Qualitative data was collected from 20 children between the ages of 6 and 18 and their respective parents. Single, semi-structured interviews were used in which children and their parents were asked to share how lymphoedema impacted on their family life. Children were asked about their school experience, their dreams and their aspirations. Three categories emerged. Firstly, the negotiation of the health care system. Themes included correct diagnosis, finding robust information and reaching a knowledgeable expert. The second category explored the complex role of the parents as advocates. Themes within this category included the dilemmas of parenting and the increasing challenges as children reached adolescence. The final category involved the impact on the family unit. The first theme concerned the integration of lymphoedema into daily activities and the intrusion on family time. The second explored the impact on siblings and the final theme the changing dilemmas as children moved through the stages of childhood and faced adulthood.
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