NTD Morbidity and Disability Toolkit in Nepal

Introduction: Despite the necessity of NTD-data, there is no agreed set of instruments to assess morbidity and disability across NTDs. Therefore, the NTD morbidity and disability toolkit (NMD Toolkit) has been developed. Because Nepal, especially the Southern area, is endemic for various NTDs, it offers a suitable context for implementation of the toolkit for the generation of NTD-data. This study aimed to contribute to a sound evidence base for the cultural validity of this NMD Toolkit, by translating the WHO Quality of Life Scale- Disability (WHOQOL-Dis) and qualitatively assess the cultural validity to measure quality of life among people affected by leprosy, lymphatic filariasis (LF), and visceral leishmaniasis (VL) in the context of South East Nepal.

Methods: As this study focussed on the assessment of the conceptual-, item-, semantic-, and operational equivalence of the WHOQOL-Dis, a cross-sectional study design and a qualitative approach were applied. Data collection was conducted in the area surrounding and covered by the Lalgadh Leprosy Services Centre (LLSC) in the Southern part of East Nepal. Through the contacts of the LLSC, by purposive and convenience sampling participants were selected. A forward- and back translation of the WHOQOL-Dis, nine semi-structured interviews and three focus group discussions among people affected by leprosy, LF and VL were conducted, after which selective and open coding facilitated the analysis process. For this study ethical approval was obtained from the Nepal Health Research Council.

Results: In total, 27 participants affected by leprosy (10), LF (9) and VL (8) were included, 11 females and 16 males with a mean age of 39 years. The assessment of conceptual equivalence showed all subjects covered in the WHOQOL-Dis were evaluated importantly by the respondents. However, they also mentioned ten supplementary aspects related to their disability or quality of life that are not covered in the instrument.

Analysis of item equivalence showed that for acceptability of the items no issues were found and respondents stated the questions were easy to understand. Nevertheless, multiple items required different or additional examples, or simplification of the questions to be understood by all respondents. Furthermore, doubt was raised about whether question 7 measured ‘autonomy’ by asking about the ability to make big decisions. Besides, the relevance of two items (advocacy & future prospects) was questioned and the relevance of the WHOQOL-Dis was considered doubtful for people who were treated for VL and who did not have visible symptoms or disabilities.

Data regarding semantic equivalence showed that most questions were translated correctly. However, only the meaning of question 3 was not transferred to the Maithili version. Consequently, it did not assess the supposed concept of advocacy.

With regard to the operational equivalence, analysis demonstrated that an interview based format was appropriate and that the average duration of administration (of twenty minutes) was considered acceptable. The response scale with verbal explanation of the answer possibilities was evaluated as adequate and comprehensible for the target population.

Discussion: The assessment of conceptual equivalence showed that the WHOQOL-Dis did not cover the concept of disability related quality of life on its own. Therefore, it was advised to combine the WHOQOL-Dis with the WHO Quality of Life-Abbreviated Scale (WHOQOL-Bref). The item equivalence was partially reached as most items were acceptable, understandable and relevant with the help of various adaptations and the use of locally suitable examples. However, due to a conceptual differences of autonomy the corresponding question did not measure the same underlying trait in the Maithili version as in the English version of the WHOQOL-Dis. The operational equivalence was shown to be good as the WHOQOL-Dis was user friendly, although the instructions on the recall time frame needed to be repeated in between in the questions.

Strengths of this study were the extensive assessment of concepts in the instrument, a continuous reflection on research activities, and the help of both female and male translators during the data collection. Besides these strong points some challenges were encountered. Firstly, the researcher was unfamiliar with the Maithili language and culture and thus dependent on translators. Furthermore, the data might be influences by the possibility of social desirable answers and a possible location bias.

Conclusion: This study makes a contribution to the aim of the NMD Toolkit as its findings suggest that, provided that the measurement properties will also prove adequate, the Maithili version of the WHOQOL-Dis is culturally valid for measuring disability-related quality of life of people affected by leprosy, LF or VL in South East Nepal. Before using the WHOQOL-Dis in NTD-research, the qualitative cultural validation started in the current study should be completed by translating and assessing the proposed user guide including the adaptations and suggestions made in this report. This qualitative phase should be followed by the assessment of its quantitative validity to complete the cultural validity of the Maithili version of the WHOQOL-Dis.