Piloting lymphoedema management for lymphatic filariasis: experiences and perceptions of patients and stakeholders from Kwale county, coastal Kenya.

Publisher: BioMed Central Country of Publication: England NLM ID: 100968562 Publication Model: Electronic Cited Medium: Internet ISSN: 1471-2458 (Electronic) Linking ISSN: 14712458 NLM ISO Abbreviation: BMC Public Health Subsets: MEDLINE

Original Publication: London : BioMed Central, [2001-

Elephantiasis, Filarial*/therapy ; Elephantiasis, Filarial*/prevention & control ; Lymphedema*/therapy ; Health Knowledge, Attitudes, Practice*; Humans ; Kenya ; Male ; Female ; Adult ; Middle Aged ; Pilot Projects

Background: The global program to eliminate lymphatic filariasis (GPELF) was started in 2003 with two strategies: mass drug administration (MDA) to interrupt disease transmission and the morbidity management and disability prevention (MMDP) to provide basic hygienic care to filariasis lymphoedema patients.
Methods: We conducted a mixed methods study with pre-intervention, intervention and post-intervention phases without control groups among 106 participants from two lymphatic filariasis-endemic wards of Lunga Lunga sub-county, Kwale county on the coastal Kenya between 2019 and 2021. During the intervention phase, a lymphoedema management care package was developed using participatory approaches. In the post-intervention phase, qualitative data was collected to assess perceptions of the impact of the intervention on patients' knowledge of and access to lymphoedema management services.
Results: In the pre-intervention phase, 86.8% of patients reported experiencing pain, swelling, or redness in their limbs, and 44.3% felt negatively about their condition. More than half (52.8%) did not know the cause of their limb swelling, and 73.6% did not use appropriate footwear. Additionally, 57.5% did not know how to care for their wounds to prevent acute attacks. Key challenges included financial constraints (39.6% spent up to 200 Ksh per visit), long distances to health facilities (24.5% lived > 5 km away), and stigma. In the post-intervention phase, participants reported improved knowledge and self-care practices, including washing, elevating, and exercising affected limbs. Community health volunteers (CHVs) were reported to play a critical role in raising awareness, identifying and referring patients, and improving health-seeking behavior, which contributed to increased service utilization and perceived improvements in quality of life.
Conclusion: Training of health care providers, caregivers and patients using the developed intervention care package contributed to improved knowledge on cause and management of lymphoedema. The CHVs played a critical role in the identification and referral of patients, which contributed to improved health-care seeking behaviour and increased service utilization. Collaboration with the county health authorities contributed to improved quality of health care services provided for lymphoedema management.
(© 2025. The Author(s).)

Declarations. Ethics approval and consent to participate: Ethical clearance to conduct the study was received from the Kenya Medical Research Institute Scientific, Scientific and Ethics Review Unit (SERU) Protocol Number 3824. Informed consent was obtained from all participants. Consent for publication: Prior to enrolment into the study, written informed consent was sought from all study participants. First the study procedures and the risks and benefits of participation were explained by the study team and information sheets were provided for review. An information sheet was provided to all individuals 18 years or above who were then invited to participate in the study in Swahili, the local language. Participants underwent written informed consent and agreed to have the questionnaire data captured on the Open Data Kit (ODK) platform ( https://opendatakit.org/ ) and the focus group discussions (FGDs) and in-depth interviews (IDIs) audio recorded. During data capture and transcription, participant names were replaced with alphanumeric unique identifiers to ensure anonymity and confidentiality. Competing interests: The authors declare no competing interests.

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NTDSC 162D Coalition for Operational Research on Neglected Tropical Diseases (COR-NTD)

Keywords: Kenya; Lymphoedema; MMDP

Date Created: 20251009 Date Completed: 20251010 Latest Revision: 20251012

20260130

PMC12512451

10.1186/s12889-025-24303-w

41068673