In an agrarian society, disability is a major cause of ill health and poverty. The disabled are socially and economically disadvantaged with reduced educational and employment opportunities. Disabled females are further disadvantaged as they are less likely to marry and more likely to suffer abuse. The burden of care of the disabled child falls on the mother, who then has less time for other children, domestic, agricultural, and economic activity. The Uganda Poverty Eradication Plan [13
] states, “households continue to name ill health as a cause of poverty more often than any single factor.” It further states “the presence of good health is necessary not just to improve the quality of life of an individual in terms of his or her well being, but is an essential input for raising the ability of people to increase their incomes at a micro level, thereby contributing to poverty alleviation, and to facilitate a productive and growing economy at the macro level.” Uganda is one of the least developed nations and has one of the highest birth rates (47 per 1000) [20
]. 31% of the Ugandan population lives below US$1 a day [21
Improving health indicators for the disabled is an issue of relevance for the MoH. In 1997, the MoH in Uganda released an information booklet “Making A Difference For Persons With Disabilities: Learn More About Disability & Rehabilitation” [15
] to provide more information on disability and rehabilitation of persons with disability in Uganda so that “all Ugandans including the disabled participate in the goal of heath for all.” After Macharia concluded that the Ponseti method could substantially reduce the disability burden caused by idiopathic clubfeet in Uganda (see Macharia in supplemental materials available with the online version of CORR), the authors desired to bring to fruition the potential impact of a Ugandan national clubfoot management strategy based on the Ponseti method. Therefore, they designed and obtained funding for USCCP with a goal to make available a sustainable, universal, effective, and safe treatment of the congenital clubfoot deformity in Uganda based on the Ponseti method. The purpose of this article is to present a brief overview of USCCP, its strategies, activities, and achievements to date (March 2008).
USCCP is testing an innovative threefold strategy to overcome the problem of the neglected clubfoot in Uganda. First, USCCP is building capacity within Uganda’s healthcare system to detect children born with clubfeet and then use Ponseti treatment to correct the deformity. Project achievements to date include the following. The MoH has approved the Ponseti method as the preferred treatment for the congenital clubfoot in all its hospitals. A total of 798 healthcare workers have received training in the detection of foot deformities and Ponseti clubfoot management (Table ). Twenty-one hospitals are offering Ponseti clubfoot care (Fig. , Table ). In 2006–2007, 872 children with clubfeet were seen, representing an estimated 31% of the expected number of children born with clubfeet during the same time period in Uganda (Table ). This seemingly small percentage becomes more meaningful put into appropriate context. In 2005, only 41% of all births occurred in a healthcare center whereas 59% occurred at home [20
]. By the end of the Project, the target is that there should be high awareness of the deformity with healthcare workers and the population, the deformity should be routinely recognized, infants should be taken for treatment, and treatment should be available and effective.
Second, USCCP is building capacity within Uganda’s schools of higher learning (that are training Uganda’s future healthcare professionals) how to teach clubfoot detection and treatment by the Ponseti method. Project achievements include the following. USCCP has designed Ponseti clubfoot teaching modules for the curricula of all medical and paramedical schools in Uganda. Currently they are in use at two medical and three paramedical schools. To date, 1152 healthcare students have benefited (Table ). By the end of the Project, there should routinely be high awareness and ability in newly trained healthcare professionals seeing children to perform their specific roles in detecting clubfeet and treating clubfeet by the Ponseti method.
Third, USCCP has an evaluative component with two mandates. The first mandate is to perform studies that would facilitate the Project to build capacity to deliver care for children with clubfeet. USCCP has performed three studies towards this mandate: (1) Survey of Incidence of Clubfoot in Uganda, (2) Understanding Clubfoot in Uganda—A Rapid Ethnographic Study, and (3) The Barriers to Adherence to Ponseti Clubfoot Treatment Protocols in Uganda—A Case-control Study.
Survey of Incidence of Clubfoot in Uganda
The incidence of clubfoot varies widely among different populations, from 0.6 and 2.57 per 1000 live births in the UK and US, with males more affected than females in a ratio of 2:1 [5
] to 6.8 per 1000 births among the natives Hawaii [3
], and 6 to 7 per 1000 births among the Maori population in New Zealand [7
]. There is limited information on the incidence of clubfoot in African countries. One study conducted in Zimbabwe in 2002 [11
] reported the incidence of clubfoot to be 0.9 per 1000 births. In another study conducted in Malawi the incidence of clubfoot was estimated to be 2 to 3 per 1000 births [19
]. A recent study conducted in Uganda, estimated the incidence of clubfoot to be up to 4 per 1000 births [12
]. Based on the findings of our multicenter study, the cumulative incidence of clubfoot was 1.2 per 1000 births with a male/female ratio of 2.4:1. Combined with the Ugandan census and birthrate data, our incidence survey data permits not only accurate estimation of children born with clubfeet by district and for the country (Table ), but also allows healthcare administrators to budget resources, and clinic staff to compare actual versus expected numbers seen.
Understanding Clubfoot in Uganda—A Rapid Ethnographic Study
A literature review revealed no articles published on how Ugandans view the clubfoot deformity. Our study explored perceptions about clubfoot (including terminology, causation, gender differences, knowledge dissemination, treatment-seeking behavior, and potential barriers to treatment) in different tribal groups. It was the first phase of USCCP, and served to inform the subsequent phases of the project. Several recommendations flowed from this survey, and project partners are implementing many. For example, “because there is no single local term in any of the local languages for what biomedicine calls a clubfoot, awareness campaigns and education should rely heavily on visual aids such as models, pictures, and hands-on practical experience,” and “due to the stigma attached to disability, it is advisable to give strong visual messages that children with clubfoot may be returned to full function following treatment.” The identification of potential barriers to adherence has led to a second study to elucidate which barriers are most influential. Space restrictions limit a fuller discussion on other recommendations (see Konde Lule in supplemental materials available with the online version of CORR).
The Barriers to Adherence to Ponseti Clubfoot Treatment Protocols in Uganda: A Case-control Study
The data suggest travel and poverty factors are major barriers to adherence to Ponseti treatment protocols in Uganda. We found no studies in the literature discussing caregivers’ perceptions and experiences with adherence to the Ponseti method of clubfoot treatment in an African setting. However, other studies have identified poverty and lack of physical access to facilities as barriers to seeking healthcare in an African setting [18
]. Failure to address these barriers can lead to the failure of healthcare programs and blaming of patients. The study supports decentralizing clubfoot care to permit easier physical access by parents and caregivers.
The British pioneer clinical epidemiologist Archie Cochrane defined two concepts related to testing healthcare interventions: efficacy and effectiveness [8
]. Efficacy is the extent to which an intervention does more good than harm under ideal circumstances (“Can it work?”). Effectiveness assesses whether an intervention does more good than harm when provided under usual circumstances of healthcare practice (“Does it work in practice?”). There remains little doubt about the efficacy of the Ponseti method in correcting congenital clubfoot deformity when conditions are ideal. In contrast, the effectiveness of the Ponseti method in real-world situations remains unknown. It can be evaluated through observational studies of real practice. USCCP’s second evaluation mandate is to perform studies that would help assess the effectiveness of the Ponseti method in the treatment of congenital clubfeet in Uganda. The study Congenital Clubfoot in Uganda Treated by the Ponseti Method—Outcome at Age 4
will measure outcomes at age 4 on a cohort of children born in Uganda with clubfeet treated by the Ponseti method by Ugandan healthcare professionals within the Ugandan healthcare system. Outcomes at age 4 in this cohort will be used as a measure of the effectiveness of the Ponseti method in the Ugandan context and will be the subject of another publication after completion of the study. This information will be of relevance for healthcare administrations interested in developing national strategies and programs for clubfoot care by the Ponseti method in other settings and countries.
The 6-year Uganda Sustainable Clubfoot Care Project aims to build the Ugandan healthcare system’s capacity to treat children born in Uganda with clubfeet with the Ponseti method and to measure the treatment’s effectiveness. The Ugandan Ministry of Health has approved the Ponseti method as the preferred treatment for the congenital clubfoot in all its hospitals. USCCP has trained 798 healthcare professionals in detection of foot deformities at birth and Ponseti clubfoot management. Ponseti clubfoot care is now available in 21 hospitals across Uganda and in 2006–2007, 872 children with clubfeet were seen. USCCP-designed teaching modules on clubfoot and the Ponseti method are in use at two medical and three paramedical schools in Uganda. A total of 1152 students in various health disciplines have benefited. USCCP surveys have (1) determined the incidence of clubfoot in Uganda as 1.2 per 1000 live births, (2) gained knowledge surrounding attitudes, beliefs, and practices about clubfoot across different regions in Uganda, and (3) identified factors that are barriers to adherence to Ponseti treatment protocols.