Worldwide assessment of healthcare personnel dealing with lymphoedema

A data extraction form was developed in Excel. Individual physicians and researchers were assigned to one of the following categories depending on their main focus: surgery, conservative therapy, research, filariasis, podoconiosis and medical imaging. Their professional affiliations were recorded along with the postal and digital address. When the information was originated in research papers, experts were grouped by geographic distribution, not by paper. International research groups had their members therefore grouped separately according to their country of residence. Experts were counterchecked individually for their qualifications (medical doctors or e.g. biologists) and a Google search for data under their name was performed to assign them to a main focus as stated above. Medical societies and institutions were also sorted by country as well as main focus and likewise pharmaceutical companies (Fig. 1). The main findings were analysed narratively as statistical pooling was not adequate for this scoping study.

Ethics approval was not required for this study, as online information is publicly accessible and there is no reasonable expectation of privacy.

One possible limitation of our study resulted from restricting our search to the internet. Certainly, local offers of lymphoedema management exist that were not visible online. About 67% of the world’s population does not have access to the internet [28]. Especially in developing regions patients still seek advice from traditional healers [29‐35]. This is supported by reports from the Caribbean, showing that most patients only seek care from university-trained but more expensive healthcare providers when traditional treatment has shown to be ineffective [26, 27]. If patients and their communities are taught about their disease, it has been shown that a loco-cultural understanding of the disease can coexist with the biomedical one [36]. Therefore, additional low-cost programs should be established, as they improve lymphoedema outcomes, even leading to an important economic benefit as patients are able to work again or work more [24]. Examples of low-cost interventions are training of communities on hygiene measures of the lymphoedema limb as well as demonstrations for the application of topic antibiotics on secondary wound infections and bandaging. When comparing the yearly costs per patient in hygiene and/or bandaging materials including antibiotic ointments (direct healthcare costs) with the gain in working days/salary since program implementation (indirect workforce costs), Stillwaggon et al. [24] could calculate per-person savings of more than 130 times the per-person costs of their program. This demonstrates the importance of understanding the cultural background when planning health resources in these societies [37]. The online selection bias might nevertheless have the advantage of listing only professionals that have reached a certain degree of impact, at least at regional level. This study therefore mimics the barriers encountered by lymphoedema patients seeking healthcare providers with the support of online search engines but might not be exact concerning the current local healthcare measures provided by the communities.

Considering the language barrier, the analysis was limited to six languages spoken by the main authors. Regions of the world not using the latin alphabet were impermeable to our search thus creating false negatives mainly in the data on Asia and North Africa. Therefore, although our search was thoroughly performed with the name of every single country in the world, the fact that we were using western languages in our search reduced our scope of investigation extensively, especially considering that Asia is an extremely populated region of the world. Retrospectively, most countries failing to provide any online information were small in size and population. Additionally, some of these countries use specific local terms to name lymphoedema. Common synonyms are “big foot” in Haiti [29] or “mossy foot” in Ethiopia [38] (Table 5). These alternative terms might have led to incomplete listing of involved professionals in the respective regions of Africa, Central America and Asia.

General analysis of the absolute number of professionals qualified at tertiary level in this field reveals a great need for Asian, North American and European countries to organise training offers. In the reminiscent regions, countries do not seem to possess enough professionals to offer the whole spectrum of medical training on lymphatic diseases (Fig. 2; Table 3). Therefore, it is paramount that healthcare providers in Asia, North America and Europe embrace this challenge, take responsibility and promote training offers to improve global geographical coverage. Lymphology should already be taught in undergraduate medical school in order to close the knowledge gap [11]. Analysing general medical care in most countries of Africa shows that although this continent is responsible for 24% of the burden of diseases worldwide, it is only disserved by 3% of the total healthcare providers [39]. One could postulate that if financial resources invested in humanitarian treatment of disease in developing countries in the past had instead been used for medical training, the present situation might not be as unbalanced. In these countries, in spite of an established prevalence of 40 million patients affected with lymphoedema as a consequence of lymphatic filariasis, few are able to receive proper medical support and treatment [9, 10, 40], especially as the patients are more likely to get the disease if they have a low or medium socioeconomic status and might therefore not be able to afford treatments [41, 42]. On the other hand, the treatment of filariasis constitutes one of the success stories of mass drug administration (Global Programme to Eliminate Lymphatic Filariasis - GPELF) with decreased primary infections following the global programs of eradication [43]. Community healthcare workers carried out the pharmacologically driven programs. Nevertheless, healthcare workers were not specifically informed about lymphoedema and lacked the clinical expertise of tertiary level professionals to diagnose this condition as a possible corollary of filaria infection. This constituted a lost opportunity of broad geographic impact perpetuating inadequate management, poor treatment and failure to meet the specific needs of patients with lymphoedema after filarial infection [26, 27, 31, 44, 45]. But, even so, substantial health and economic benefits have risen from the program, especially in what concerns lymphoedema prevention by treating the causal worm [42]. National strategies are often followed by new investments. The government of Ethiopia just recently invested in the fight against neglected tropical diseases (including lymphoedema/podoconiosis) in order to achieve the goal of eliminating these until 2020 according to a set up national plan [45]. An important addition to national strategies would be to collect statistical data on the current prevalence of the disease and apply epidemiologic information in the creation of medical support where help is needed [46, 47].

The heterogeneity of medical training is not restricted to developing countries. A lack of specialised physicians especially exists in poorer, more rural and remote areas as described for Australia [48] and similar findings were postulated even across the U.K. [8]. In the case of Spain, most mapped physicians were located in cities. Lymphoedema consultation services are mostly based in hospitals and for public insurance patients the access is restricted, making it more difficult to seek qualified treatment [8]. With the exception of some regions of Germany and Switzerland, professionals specialised in lymphatic diseases were very seldom general practitioners, rendering this distributary problem a characteristic of most countries worldwide.

Regarding the data on the number of researchers dedicated to lymphoedema, one of our main difficulties during our search was to identify if these professionals were physicians, or belonged to other professional branches e.g. biologists. Nevertheless, this academic distinction has little influence on the capacity of researching solutions for a disease, as this plurality might be beneficiary for innovation. Most researchers originate from continents with developed countries such as Oceania or Europe. Awareness and public funding of research are still low on upcoming continents such as South Asia although things have started to change [49]. Young researchers are less attracted to investigate a field they have never heard about as most of their universities have failed to include lymphatic diseases in the university curricula. An important milestone of a global strategy to address the problem of medical care of lympho-vascular diseases should also include measures to break the vicious circle of the lack of research. This has to be achieved outside of the laboratories at sub graduate level through innovative training offers.

Patients trying to find qualified medical healthcare professionals online, will be confronted with similar limitations encountered in this study. Nevertheless, patients express a deep need for guidance and information [50]. A medical doctor with expertise in lymphatic diseases that cannot be found by patients searching online is equivalent to a very localised resource. Therefore, we also analysed the number of professional societies, as they play a paramount role in providing information on the spectrum of expertise of their members. Physicians were easily found in South America as the Pan-American Society for Lymphology and Phlebology published a list of physicians. Other examples of societies providing well-structured information are to be found in Germany and Switzerland. There was no clear correlation between the number of professionals specialised in lymphology in a region or country, and the number of professional societies active in this field. But most problematic was the complete lack of independent societies for lymphatic diseases in most countries of the world that could contribute to high level postgraduate education and facilitate discussions about diagnosis and treatment guidelines.

In our analysis of the distribution of industrial activity connected to lymphoedema, North America and Europe were the leading continents. The associated industry is currently not pharmaceutical but mainly biotechnological focussing on measurement devices, surgery microscopes and compression garments. Similarly to pharmaceutical companies, biotechnology companies show less interest in e.g. Africa or South America most likely due to poor distribution networks and low profit margins.

It is somewhat striking to see this disparity of numbers of specialised physicians in developed countries. We believe the reasons for their relatively high number in some countries as e.g. Belgium or Germany to be historical. The first lymphoedema clinic was founded in Germany and already in the late seventies, German healthcare insurances started reimbursing lymphoedema therapy modalities. Although many physiotherapists in Germany are trained in manual lymphatic drainage, only medical doctors are entitled to prescribe it. Therefore, there is a positive peer pressure between both professional groups. This leads to some degree of medical training in this field [51], mostly of general physicians as well as doctors in physical and rehabilitation medicine [52]. Why do other developed countries with a similar number of lymphedema patients still lack specialised human health resources? Improving the quality of management of this disease in Germany and the Benelux was not solely due to medical professionals in itself but mostly to the professional group of the physiotherapists. Here, reimbursement of lymphoedema treatment was adequate, but only allowed to those physiotherapists having undergone validated specialised training. This motivating restriction never happened in the medical profession. The medical chamber of doctors in Germany failed until now to recognise a medical subspecialty in lymphatic diseases, although reiterated proposals have been delivered by professional societies since the nineties. Until today, all physicians are entitled to manage lymphoedema patients. Also, the reimbursement for this medical act is very low and calculated for periods of three months regardless of the number of times the patient has to be seen in that time interval, leading to low motivation to treat this chronic disease. Paradoxically, European policy makers do not seem to be aware of the costs of fail prescriptions and poor management.

In the U.S. severe reimbursement barriers still exist for lymphatic diseases [18, 53]. Here, not only direct costs, but also travel costs and loss of earning prohibit patients to seek proper medical treatment [25, 54].

Interestingly, in the U.K., where the number of medical doctors specialised in this field is also below demand, nurses established a culture of lymphoedema treatment based on patient self-management and training of family members to provide lymphatic drainage. Showing patients how to manage their lymphoedema reduces exacerbations and improves their quality of life [24, 55]. Therefore, it is not neutral to decide which professionals will become key players in this field. It is not sufficient to limit the reimbursement to certified professionals, but special incentives for patient training and empowerment should also be promoted. They eventually increase the patients’ independence from the same providers of care that are so scarce in most health systems.