Validation of a cross-NTD toolkit for assessment of NTD-related morbidity and disability. A cross-cultural qualitative validation of study instruments in Colombia

Abstract

BackgroundMany neglected tropical diseases (NTDs) are not fatal, but they are disabling, disfiguring and stigmatizing. More accurate data on these aspects would benefit planning, monitoring and evaluation of interventions, as well as provision of appropriate services for the often life-long consequences. In 2015, a cross-NTD toolkit was developed, consisting of a variety of existing questionnaires to measure morbidity, disability and health-related quality of life. The toolkit covers the domains of the International Classification of Functioning, Disability and Health (ICF) framework. These tools have been developed in a source country, however, it was intended for the cross-NTD toolkit to be applicable across NTDs in many countries with different cultures and languages in order to generate universally comparative data. Therefore; the present study aimed to validate several tools of the toolkit among people affected by leprosy or leishmaniasis in the cultural settings of Cartagena and Cúcuta, Colombia.MethodologyThis study aimed to validate the following tools among 55 participants between 18–85 years old, affected by leprosy and leishmaniasis: (I) Clinical Profile, (II) Self-Reporting Questionnaire (SRQ), (III) WHO Quality of Life assessment-abbreviated version (WHOQOL-BREF), and (IV) WHO Quality of Life assessment-Disability (WHOQOL-DIS). The tools were administered during face-to-face interviews and were followed by open questions about the respondents’ thoughts on format of the tool and the understanding, relevance and acceptability of the items. The tools were validated using a qualitative method approach based on the framework for cultural equivalence, measured by the cultural, item, semantic and operational equivalences.ResultsThe Clinical Profile was seen as acceptable and relevant, only the semantic equivalence was not as satisfying and needs a few adaptations. The SRQ was very well understood and shows to reach the equivalences for the population of Colombia without any additional changes. Several items of the WHOQOL-BREF and the WHOQOL-DIS were not well understood and changes are recommended due to semantic difficulties. Operational equivalence of both questionnaires was not as desired in relation to the used response scales. The participants shared that the tools are relevant and important for their particular situation.Conclusions/SignificanceThe SRQ is found to be a valid tool for Colombia and can be included in the cross-NTD toolkit. The Clinical Profile, WHOQOL-BREF & WHOQOL-DIS need changes and retesting among Colombian people affected by an NTD. The toolkit as a whole is seen as useful to show the effects leprosy and leishmaniasis have on the participants. This cultural validation will contribute to a universally applicable cross-NTD toolkit.

Stigma, participation restriction and mental distress in patients affected by leprosy, cutaneous leishmaniasis and Chagas disease: a pilot study in two co-endemic regions of eastern Colombia

“…The research used questionnaires previously culturally validated for Colombia, a strength that allows comparisons between countries for leprosy. 16 However, the use of these questionnaires in CD and CL is relatively new. Additionally, validation of the questionnaires by Fischer et al did not include validation of the cut-off points.…”

“…Additionally, validation of the questionnaires by Fischer et al did not include validation of the cut-off points. 16 …”

“…The questionnaires have been culturally validated for Colombia and for their applicability to people affected by CL and leprosy. 16 The SRQ is a screening instrument for psychiatric disturbances and includes the main consequences of mental health problems. 17 A high total score (maximum 20) indicates mental distress.…”

Disability, mental health, stigma and discrimination and neglected tropical diseases

“…NTDs have therefore attracted attention because they lead to a range of morbidities, and ultimately disability. 1 …”

“…First, the focus of NTD programmes has been on elimination and eradication, so rehabilitation, whether defined in a narrow medical sense or more holistically and broadly, is not part of the long-term strategy. Second, the lack of data and tools to estimate the link between NTDs and disability 1 or the effectiveness of interventions to alleviate disability hampers efforts to plan and advocate for these initiatives. Third, NTD programmes are often oriented towards a medical model of disease, identifying and treating clinical symptoms, and so do not focus on the wider repercussions of disease in peoples’ lives.…”