Podoconiosis, or non-filarial elephantiasis, is a geochemical type of neglected tropical disease that affects individuals, often barefoot subsistence farmers, exposed to the red clay soil originating from volcanic rock [1]. Irritant particles in this soil penetrate the skin of the foot resulting in a progressive obliterative endolymphangitis. Although further studies are needed to fully understand the pathogenesis of podoconiosis, it has been demonstrated that colloid-sized particles of common irritant clay elements such as aluminum, silicon, magnesium and iron are present in lower limb lymph node macrophages of affected and non-affected individuals living in podoconiosis endemic regions. Evidence suggests that for those that are genetically susceptible, the primary lymphatic vessels become dilated, and edema and disorganized collagen production occurs, eventually obliterating the lymphatic vessel lumen [2]. Clinically, this causes debilitating lymphoedema of the lower leg, with or without skin changes, including hyperkeratosis, ‘mossy’ papillomata, and fibrotic nodule formation [3]. Early symptoms include itching of the forefoot skin, burning sensations in the foot and lower leg, splaying of the forefoot, plantar edema, and increased skin markings. On average, affected patients also experience 5 acute episodes (acute adenolymphangitis, ALA) per year, consisting of pyrexia, a warm, painful limb, and possible progression to a harder, fibrotic leg [2].

Podoconiosis is staged using an adapted Dreyer staging system for lymphatic filariasis. This adapted system has five stages based on the proximal spread of swelling, knobs and bumps in addition to the measurement of moss presence (M+ or M−) and the below-knee circumference. Podoconiosis can be distinguished from filarial elephantiasis through history and clinical examination: podoconiosis develops first in the foot, it causes bilateral but asymmetric swelling often confined to the lower leg, and groin involvement is rare in podoconiosis. In contrast, lymphatic filariasis can extend above the knee and has the potential for groin involvement. Another common differential diagnosis apart from podoconiosis is leprosy lymphedema. Patients with podoconiosis can be distinguished from leprosy lymphedema because sensation persists in the toes and forefoot, and trophic ulcers, thickened nerves and hand involvement are not experienced [2]. In endemic areas, podoconiosis has shown to be reliably diagnosed by lay health workers [4].

Podoconiosis is of public health importance in highland zones of Africa [5]. In Ethiopia alone, nearly 11 million people or approximately 18% of the population are at risk of podoconiosis [6]. In a podoconiosis endemic zone in Southern Ethiopia, a cross-sectional survey estimated a podoconiosis prevalence of 5.46% [7]. Another cross-sectional survey conducted in Western Ethiopia found 2.8% disease prevalence. These figures projected to the population living on irritant soil throughout the country suggest that approximately one million Ethiopians may be affected by the disease [8]. Podoconiosis is also associated with significant economic and social burdens. In a study by Tekola et. al, it was found that affected individuals lose 45% of their total productive work days, costing a single zone of 1.5 million people in Ethiopia more than 16 million USD annually [9]. Furthermore, another cross-sectional study in Southern Ethiopia found that more than one-half of respondents studied showed stigmatizing attitudes towards social interactions with podoconiosis patients [10].

Despite the public health importance and prevalence of podoconiosis, few control initiatives exist. In Wolayta, Southern Ethiopia, the Mossy Foot Treatment and Prevention Association (MFTPA) has been recognized as a successful ongoing podoconiosis community program model since 1998 as compared to the World Health Organization (WHO) Innovative Care for Chronic Conditions (ICCC) Framework [11]. The MFTPA program consists of prevention (distribution of shoes to children, adult shoemaking), treatment (hygiene/shoe wearing education integrated into clinics), and rehabilitation (microcredit, training) activities at the community-level across one zone. In June 2010, the first podoconiosis program in Northern Ethiopia was started in Debre Markos, East Gojam Zone in an effort to take the experiences of MFTPA and develop a program specific to the context of Northern Ethiopia. The program in Debre Markos aims to address podoconiosis prevention, awareness, and care and support activities. We report a qualitative evaluation of this community-based health program designed to document and disseminate the lessons learned from its launch in a region that had yet to see podoconiosis interventions. In particular, we identify the processes the project underwent including the relevant challenges and successes, the stakeholder roles, and the misconceptions and socio-cultural factors affecting program implementation.

From the data collected, sixteen program steps were identified including relevant program successes and challenges. These steps were grouped into 6 domains: Initial preparation, training and sensitization, foundation building, treatment activities implementation, awareness, and follow-up. As seen in Tables 1–6, the first initial preparation domain includes the following three steps: Gather data on endemicity to begin identifying implementation areas; Identify local stakeholders and engage in discussion to further identify a program implementation area; Approach the local government and community leaders in the identified area. (Sources: Interviews, FGD, monitoring and evaluation reports, observation notes.) The second training and sensitization domain includes the following four steps: Organize a one day program sensitization workshop; Identify program support staff; Program coordinator and nurse attend training at established program; Organize a half day training on how to conduct a baseline assessment. (Sources: Interviews, monitoring and evaluation reports, observation notes.) The third foundation building domain consists of the following three steps: conduct a baseline assessment or household survey (462 podoconiosis affected individuals were identified from four villages with an estimated total population of 12,650, giving an approximate disease prevalence of 3.7%); Identify a treatment site; Purchase treatment and shoemaking supplies. (Sources: Interviews, FGD, monitoring and evaluation reports, observation notes.) The fourth treatment activity implementation domain consists of two steps: Arrange for an experienced podoconiosis program shoemaker to provide training and begin shoemaking; Begin weekly treatment meetings. (Sources: Interviews, FGD, monitoring and evaluation reports, observation notes.) The fifth awareness domain includes two steps: Develop Information Education Communication/Behavioral Change Communication (IEC/BCC) materials; Host podoconiosis community-at-large awareness events. (Sources: Interviews, FGD, monitoring and evaluation reports, observation notes.) Finally, the sixth follow-up domain consists of two steps: Follow-up with patients at household level; Develop monitoring and evaluation (M&E) forms. (Sources: Interviews, monitoring and evaluation reports, observation notes, literature review.)

Additional notes, successes, and challenges are documented for each step. Emphasis is placed on the need to gather baseline data, for effective training, local leadership, experience-sharing, mass-awareness, cross-cutting sector issues (i.e. water and waste management), and integration with government health systems. Related successes and challenges were also identified, many of which are relevant to the aim of the podoconiosis program to be sustainable and community-led.

Across these program steps, many different stakeholders were found to hold a role, each being significant to the success of the activities. Stakeholder roles in establishing the new program were identified as shown in Table 7.

A range of misconceptions about the disease and about wearing shoes were reported by community members and affected individuals, many of which are likely to influence the program in its early stages.

The results gathered are intended to report the lessons learned from the start-up of the Debre Markos podoconiosis program, the first of its kind in Northern Ethiopia. From these results, two important lessons learned can be noted as critical components to effective program start-up:

The focus group discussion of patients with podoconiosis added particular value to the results presented. Their experiences approaching and navigating the podoconiosis treatment for the first time and their experiences with associated stigma provided a unique perspective that also dictates local podoconiosis program start-up steps. In addition, the misconceptions concerning podoconiosis and the socio-cultural challenges reported by people with podoconiosis were likely to influence a new program.

“These beliefs affect the program because it takes time to convince patients otherwise” (Female nurse, 22 years old.)

It was our experience that these misconceptions act as barriers to new programs because patients need to be educated on the true cause of disease and convinced of the value of the hygiene treatment practices suggested. The practical clinical improvement seen by patients was a powerful tool in overcoming these misconceptions. After witnessing the improvement of others with the disease, a majority of patients turned away from their earlier misconceptions about the cause of podoconiosis and were more willing to follow the recommended hygiene treatment. The daily challenges faced by people with podoconiosis also create additional program barriers that need to be addressed in a sensitive manner.

Overall, we hope the results of this study are a fair and honest representation of the perceptions, challenges, and successes surrounding the beginning of the Debre Markos program and its ability to address podoconiosis. However, several limitations should be noted in this study's approach.

An “insider-outsider” perspective was taken to conduct the study, meaning that the authors were involved in the events described in the study [15]. There is a risk that the perspective of the authors comes across too strongly a voice in the results of the study or that ‘social desirability’ biases existed in the case of reporting program challenges or mistakes. Furthermore, the authors were present at a number of the semi-structured interviews and focus group discussion, so there is a clear possibility for reporting bias. In contrast, the “insider-outsider” perspective may add strength to telling the story of the Debre Markos podoconiosis program by combining the words of the authors and a range of different informants. Regardless, no attempt is made here to state that the insights are neutral or not influenced by the involvement of the authors. Additionally, the study moved between international and national staff which may have resulted in subtle cultural and interpersonal communication constraints which also could have affected the study outcomes.

This “insider-outsider” perspective captured a cross-section of stakeholders. It could have been colored by changing positions, events, and context. The study was conducted as an evaluation to provide feedback to the Charities & Societies Agency and local stakeholders and was thus, resource-constrained. If further resources had been available, the evaluation could have been made more comprehensive by including an expanded cross-section of stakeholders and additional community participatory methods. Particular stakeholders such as those from the education sector were not included in the interviews. As noted in Table 2, the school plays an important role in disease prevention, awareness, and stigma and should hold weight in the start-up of community podoconiosis programs. In all program steps identified, government ownership emerges as an important factor. More reflection at government level may strengthen application of the lessons identified at the start of future podoconiosis programs. Additionally, the conducted baseline assessment which showed results of a 3.7% prevalence of podoconiosis in the area could be inaccurate estimate as limited supervision and lack of a questionnaire pre-test may have affected data collection quality.

It should also be recognized that other groups such as the Mossy Foot Treatment and Prevention Association (MFTPA) in Wolayta, Southern Ethiopia have important experience to contribute to other podoconiosis programs. Against the WHO ICCC Framework, it was found that their strength at the micro-level is evident particularly through involvement of treated patients as community patient agents (CPAs) and through network groups composed of local leaders [10]. Their experience in clinical, social work, and administration areas relevant to podoconiosis may be considered ‘best practice.’ The ICCC Framework consists of micro (i.e. patient), meso (organization/community), and macro (policy) levels and was created by a WHO working group to enable health care systems to design programs to more effectively manage long-term health problems [11]. In addition, there are different lymphedema management programs in Africa and India on basic lymphedema hygiene self-care for individuals affected with lymphatic filariasis that could provide other clinical support models [16].

This study was conducted to document and disseminate the lessons learned from the experience of starting up a community-based prevention program. These lessons are illustrated in the form of project process steps, related project challenges and successes, stakeholder roles, and misconceptions and socio-cultural factors affecting program start-up. The results of the analysis have been used to improve the design and implementation of the present Debre Markos program and increase its chances of sustainability. Logical frameworks have been developed and assumptions have been identified. This qualitative information could hold more depth than quantitative survey research in designing strategies for change.

We anticipate that these lessons will be useful in guiding future programs in other settings where podoconiosis is highly prevalent. In the future, a comprehensive regional and national podoconiosis prevalence mapping is necessary to identify endemic areas with high disease burden. Associated patient-led groups should be established in more remote areas identified to further the reach of the treatment site and an effective patient ‘graduation’ scheme needs development. Government ownership must continue to be promoted at all national, regional, and local levels. Podoconiosis activities should be mainstreamed through the appropriate government directives (i.e. directives encouraging local health bodies to take leadership) and decentralized community initiatives. Specific pre-service and in-service training for health professionals at every level is necessary. Partnerships with local government bodies and other existing NGOs must be encouraged and podoconiosis prevention and treatment activities integrated with existing school health education programs and community water projects. Currently, there are school health education programs implemented in Amhara Region that focus on hygiene education through peer-group leadership and creative activities such as music and drama, which might be used for podoconiosis education. The following domain steps might also provide opportunities for integration with other neglected tropical diseases: Domain One. Initial Preparation/Step C. Approach the local government and community leaders in the identified area (government ownership); Domain Two. Training and Sensitization/Step A. Organize a one day program sensitization workshop and Domain Five. Awareness/Step A. Develop Information Education Communication/Behavioural Change Communication materials and Domain Six. Follow-up/Step A. Follow-up with patients at household level. There is a common hygiene message with lymphatic filariasis (however, it should be noted that podoconiosis is endemic in regions at 1000 m–2000 m above sea level where lymphatic filariasis is not typically found), trachoma, soil-transmitted helminthes and a common shoe use message with soil-transmitted helminthes [2]. Additionally, integration and partnership opportunities could also be considered with conditions related to “integrated limb care”, such as diabetes, venous insufficiency, and the concerned neglected tropical diseases.

With this study, we also hope to encourage partnerships and collaboration among podoconiosis stakeholders. The potential for experience-sharing and collaboration among podoconiosis stakeholders has the power to arouse public interest and stimulate action in addressing this neglected tropical disease.