Abstract

Introduction: Chronic lymphoedema (CL) of lymphatic filariasis causes severe psychosocial burdens (PSB) to its victims. Currently-established scales to measure PSB of CL are not culturally adaptable to Sri Lankan patients. In this study, we developed and assessed the psychometric properties of a disease-specific questionnaire (15 item PSB-CL). Methods and Results: A detailed literature search was done to identify scales related to PSB of CL patients. Questions were developed through collected expressions from semi-structured interviews with 46 CL patients. A response scale was developed from the collected pool of possible responses, and they were scored using a visual analogue scale. Face and content validity were carried out using an initial questionnaire (31 questions). They were reduced to 27 by removing unclear, ambiguous, double-stranded ones and those with value-laden words. This new questionnaire was administrated on 92 patients by a group of doctors for item reduction by the analysis of internal consistency (Cronbach’s alpha > 0.7) and factor analysis (Principal Component Analysis; Eigenvalues > 1). After the patient survey and factor analysis, the final questionnaire PSB-CL was formed with 15 questions that had four subscales (factors), physical, social, fear and humiliation. Patients (n=92) reported quite a large percentage (42% - 69%) of problems under each dimension. Conclusion: The scale to measure the psychosocial burden of chronic lymphoedema in lymphatic filariasis patients in Sri Lanka. Further validation of the tool is needed.

Highlights

  • Chronic lymphoedema (CL) of lymphatic filariasis causes severe psychosocial burdens (PSB) to its victims

  • Lymphatic filariasis (LF) is a tropical disease caused by thread-like worms - Wuchereria bancrofti, Brugia malayi, Brugia timori - living in the human lymph system [1]

  • Lymphoedema, acute episodes of adenolymphangitis (ADL), hydrocoele, lymph scrotum, and chyluria are due to the damage of lymphatic systems

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Summary

Introduction

Chronic lymphoedema (CL) of lymphatic filariasis causes severe psychosocial burdens (PSB) to its victims. Lymphatic filariasis (LF) is a tropical disease caused by thread-like worms - Wuchereria bancrofti, Brugia malayi, Brugia timori - living in the human lymph system [1]. Lymphoedema (elephantiasis), acute episodes of adenolymphangitis (ADL), hydrocoele, lymph scrotum, and chyluria are due to the damage of lymphatic systems. Other symptoms such as arthritis, renal diseases, and tropical pulmonary eosinophilia (TPE) are ascribed to extralymphatic filarial infection [3, 4]. Acute episodes of ADL, lymphoedema and hydrocoele are the three principal manifestations of LF that cause severe suffering [5].

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