Over 25 Years of Hope: Development of Lymphatic Filariasis Patient Support Groups in Haiti.

Support groups can create environments that are conducive to healing and well-being, particularly for persons with stigmatizing chronic diseases. In 1998, the support group concept was adapted in Haiti for persons with disabling lymphedema caused by lymphatic filariasis (LF). The project was developed with the expectation that the support group model conceived in the developed world be interpreted and modified by persons affected with lymphedema in the Haitian setting. Initiated with modest financial support within a research initiative to eliminate LF, a total of 50 "Hope Clubs" were formed from 1998 to 2023 across seven communes (districts) located in 3 of Haiti's 10 regional Departments. Documented benefits of the support groups included improved limb self-care, decreased incidence of inflammatory episodes (adenolymphangitis), enhanced self-efficacy, economic benefit through microenterprise, and improved quality of life. Despite challenges of funding shortfalls, natural disasters, and political insecurity, persistence of LF support groups in Haiti highlights the crucial role of group ownership by affected persons and the freedom to reinvent the support group concept in light of local social, cultural, and economic conditions.

Frequency, severity, and costs of adverse reactions following mass treatment for lymphatic filariasis using diethylcarbamazine and albendazole in Leogane, Haiti, 2000.

In October 2000, 71,187 persons were treated for lymphatic filariasis using albendazole and diethylcarbamazine (DEC) or DEC alone in Leogane, Haiti. We documented the frequency of adverse reactions, severity and cost of treatment. Adverse reactions were classified as minor, moderate, or severe. Overall, 24% (17,421) of the treated persons reported one or more adverse reactions. There were 15,916 (91%) minor and 1502 (9%) moderate adverse reaction reports. Men outnumbered women 2:1 in reporting moderate problems. Three patients, representing roughly one in 25,000 persons treated, were hospitalized with severe adverse reactions judged to be treatment-associated by physician review. The cost per person treated for adverse reactions was more than twice the cost per person treated for lymphatic filariasis (dollar 1.60 versus dollar 0.71). Severe adverse reactions to lymphatic filariasis treatment using DEC with or without albendazole are uncommon. Minor and moderate reactions are more commonly reported and their management represents a challenge to lymphatic filariasis elimination programs.

Evaluation of antibacterial soap in the management of lymphoedema in Leogane, Haiti.

In areas endemic for lymphatic filariasis, progression of lymphoedema is associated with recurrent bacterial acute dermatolymphangioadenitis (ADLA). The role of antibacterial soap in preventing ADLA is unknown. In a randomized double-blinded clinical trial in Leogane, Haiti, lymphoedema patients washed affected legs with antibacterial (n = 97) or plain soap (n = 100). Reported ADLA incidence (by recall) before the study was 1.1 episodes per person-year, compared to 0.40 assessed during the 12-month study. ADLA incidence was significantly associated with age, illiteracy and lymphoedema stage, but not with soap type. Washing with soap, regardless of its antibacterial content, can help decrease ADLA incidence. (ClinicalTrials.gov identifier number NCT00139100.).