Assessing the impact of the Heart and Sole Africa (HASA) prevention education program using clinical staging and quality of life measures of podoconiosis patients.

Background: Podoconiosis is a non-infectious chronic lymphedema that occurs in genetically
susceptible individuals, upon long-term feet exposure to irritant volcanic soil. It is a debilitating
disease with profound psychological, social, and economic consequences. Nearly 4 million
subsistence farmers and impoverished populations are affected worldwide, with more than
6,000 podoconiosis patients residing in Rwanda. Established cases of podoconiosis are often
irreversible. Community-based lymphedema management is currently recommended for the
management of the morbidity caused by podoconiosis. Only one organization (HASA) currently
provides lymphedema management services in Rwanda. This study evaluated the adherence
characteristics, the changes in clinical condition and quality of life of podoconiosis patients
enrolled in HASA’s community-based lymphedema management program.
Methods: A cross-sectional study was conducted using in-person surveys and physical
examinations between May and June 2021. We included all HASA participants who joined the
program within the past 5 years, residing in Musanze and Burera Districts. Data was collected at
the two HASA clinics in Musanze City and Kinoni Village. The survey measured quality of life,
adherence to podoconiosis management guidelines, patients’ perceptions of the HASA PEP, and
clinical staging. Quantitative analysis was conducted using SPSS (IBM, V.26). Pearson’s Chi square, Mann Whitney U, Kruskal Wallis, and Wilcoxon’s signed-rank tests were used to test for
association between variables and statistical significance was considered at p <0.05. Qualitative
thematic analysis was used to assess the open-ended questions.
Results: A total of 127 participants (18 male, 109 female) were enrolled in the study. Twenty-five
participants had pre-HASA photographs for clinical staging. The mean age of our participants was
56.8 years (SD=17.9). Half (50.4%) of participants belonged to the lowest Ubudehe (category 1).
Nearly half (44.1%) of the participants were farmers. More than two-thirds (69.3%) of
participants washed their feet at least twice a day, while 45.7% raised their legs overnight. The
majority (78.7%) of participants regularly wore shoes. Few (6.3%) participants experienced
frequent ADLA episodes post-HASA when compared to pre-HASA intervention (89.8%). Almost
all (98.4%) participants experienced an improvement in their QoL. The median QoL score
decreased from 14 to 7 (p<0.01). There was no significant change in the clinical stage of
participants (p>0.99). Participants reported improvements in mobility, self-esteem, and
productivity. The disruption caused by Covid-19 and financial constraints were cited as major
drivers for reduced adherence to the HASA PEP guidelines.
Conclusion: Community-based lymphedema management is an important tool for the reduction
of morbidity caused by podoconiosis. Its benefits are not only limited to improvements in clinical
condition but also the overall psychosocial wellbeing of patients. Programs should follow a
holistic approach to improve adherence to programs and ensure optimal benefits.