Effect of a Community-Based Holistic Care Package on Physical and Psychosocial Outcomes in People with Lower Limb Disorder Caused by Lymphatic Filariasis, Podoconiosis, and Leprosy in Ethiopia: Results from the EnDPoINT Pilot Cohort Study

Abstract

Lymphatic filariasis (LF), podoconiosis, and leprosy are highly stigmatized neglected tropical diseases that can cause lower limb swelling and deformity. Simple interventions to support self-care can reduce their physical impacts, but little is known about how to address the psychosocial needs of people living with the diseases, and about how to scale-up morbidity reduction programs. EnDPoINT is a multistage implementation study designed to address these knowledge gaps by developing and evaluating a holistic care package that can be integrated into the Ethiopian health system. This article presents the quantitative results from the EnDPoINT pilot, in which the effectiveness of the care package was assessed in 251 participants from one district in northern Ethiopian using a pre-post design. Reductions 12 months after care package initiation were seen in attacks of acute adenolymphangitis (adjusted odds ratio for attack in last month 0.005; 95% CI 0.001, 0.02; P < 0.001), lower limb and foot circumference (mean difference lower limb circumference −2.0 cm; 95% CI −2.3, −1.8; P < 0.001; foot circumference −2.3 cm; 95% CI −2.5, −2.0; P < 0.001), and lymphedema stage (mean reduction in stage −0.27; 95% CI −0.37, −0.19; P < 0.001). Significant improvements were also observed in scores assessing disability, quality-of-life, depression, stigma, discrimination, and social support. This study thus suggests that the EnDPoINT care package is highly effective in reducing morbidity in people living with LF, podoconiosis, and leprosy in northern Ethiopia.

The role of a community conversation intervention in reducing stigma related to lower limb lymphoedema in Northern Ethiopia

“…These changes may be accounted for directly or indirectly by the EnDPoINT holistic care package. The EnDPoINT pilot study (without CC) suggested an association between the holistic care package and improved quality of life, reduced levels of depression, and reduced experiences of internalized stigma and discrimination [ 26 ]. A range of studies have also demonstrated that encouraging simple self-care measures to promote foot hygiene can reduce limb swelling and improve quality of life [ 43 – 45 ].…”

“…Details in regard to the development and implementation of the EnDPoINT/IMPRESS project have been provided in previous reports [ 23 ]. The EnDPoINT care package entailed comprehensive MMDP and mental health services including capacity-building training for health care organization staff, case detection and treatment for patients at health facility level, integrated mental health care, and community awareness campaigns [ 23 – 26 ]. The IMPRESS study built on this unique opportunity and focused on the specific question of how best to reduce stigma within this integrated MMDP programme.…”

Stigma and stigma-induced stress in filarial lymphoedema patients in Puducherry, India

“…Control programs need to consider interventions beyond disfigurement, and as suggested by Zhang et al, there must be a long-time commitment (30) to the rights-based approach (31). Internationalized Stigma in Mental Illness (ISMI) scale modified for lymphoedema patients in Ethiopia showed that community-based intervention significantly reduced the stigma among lymphatic filariasis patients (32). Support from Non-Governmental Organizations is essential to identify the gaps in the implementation of control measures and also to fill the gap (33).…”

A pilot study to address the mental health of persons living with lymphatic filariasis in Léogâne, Haiti: Implementing a chronic disease self-management program using a stepped-wedge cluster design

“…While the relationship between mental health and NTDs has been documented, 14 interventions to address chronic disability caused by NTDs and co-occurring symptoms of mental illness are limited. 15 , 16 Other chronic diseases studies provide evidence for improving overall health outcomes and quality of life (QoL) by addressing patients’ mental health. 16 , 17 This study evaluated the applicability of a Chronic Disease Self-Management Program (CDSMP) as a potential tool to address the mental health and QoL of persons living with NTDs.…”

“… 15 , 16 Other chronic diseases studies provide evidence for improving overall health outcomes and quality of life (QoL) by addressing patients’ mental health. 16 , 17 This study evaluated the applicability of a Chronic Disease Self-Management Program (CDSMP) as a potential tool to address the mental health and QoL of persons living with NTDs.…”