The Washington Group Questions are an approach to measure disability in a certain population (Madans 2017). A UN city group under the UN Statistical Commission, the Washington Group has designed a number of data collection tools to measure disability, including the Extended Question Set on Functioning and the Short Set of Questions on Disability. Lepra decided to use the Washington Group Short Set (WG-SS), a list of six questions looking at core functional domains that should be integrated into existing surveys. It is important to emphasise that the WG-SS is not designed as a tool for diagnosing an individual’s ‘disability level’. Instead, it gives us an indication of the possible impact of an individual’s conditions on functional abilities (Washington Group on Disability Statistics 2016), and can be used to estimate the prevalence of these impacts within a population.
Inclusion, in physical, social and economic terms, of people with neglected diseases is at the heart of Lepra’s work. With disability inclusion increasingly recognised as a cross-cutting theme in international development and with the revision of Lepra’s monitoring and evaluation strategy, the organisation asked itself: how inclusive are Lepra’s projects? The projects focus primarily on people with leprosy and lymphatic filariasis. This gave the organisation a strong sense of disability levels and the impact of disability among people affected by these diseases. The WG-SS allowed Lepra to look
1. 2. 3. 4. 5.
Do you have difficulty seeing, even if wearing glasses? Do you have difficulty hearing, even if using a hearing aid? Do you have difficulty walking or climbing steps? Do you have difficulty remembering or concentrating? Do you have difficulty (with self-care such as) washing all over or dressing? 6. Using your usual (customary) language, do you have difficulty communicating, for example understanding or being understood?
a. b. c. d.
No – no difficulty Yes – some difficulty Yes – a lot of difficulty Cannot do at all
beyond the diseases of leprosy and lymphatic filariasis and see how people with all sorts of functional abilities were represented in their projects. The WG-SS further strengthened Lepra’s data collection because the WG-SS self -assessment of disability compliments conventional medicalbased assessment of disability in leprosy and LF cases. Disability is defined differently in all three countries in which Lepra currently operates. Consequently, India, Bangladesh and Mozambique also have different estimations of disability prevalence in their countries.
Bangladesh measures disability prevalence using the Washington Group methodology, whereas India and Mozambique do not, which shows in their national estimates. In this context, introducing the WG-SS will give Lepra a uniform measure of disability in their projects. It was expected that evidencing disability levels will in turn help Lepra and their beneficiaries in their advocacy efforts towards disability inclusion, e.g. making disability allowances available for people with neglected diseases.
Finally, there was a pragmatic consideration. Using the WGSS in monitoring and evaluation will enable Lepra to align with disaggregation objectives pertaining to Sustainable Development Goal 3 (Good Health and Wellbeing) and required by an increasing range of donors, including DFID.
Global: India: Bangladesh: Mozambique:
10-15% (World Bank 2011) 2.2% (Census of India 2011) 9.1% (Bangladesh Bureau of Statistics 2011) 1.9% (World Bank 2011)
In April 2016, the WG-SS was integrated into a beneficiary survey with the start of the Reaching the Unreached Project in Bangladesh to pilot its use. The project will run until March 2019 and is funded by UK Aid. Lepra’s beneficiary survey collects data on core indicators for the principle beneficiaries of the project: people affected by leprosy and lymphatic filariasis. Leprosy and lymphatic filariasis often cause disability and Lepra was aware that this would create a bias in the responses to the WG-SS questions. To reduce this bias and to alleviate concerns that the survey might become too long with the addition of six extra questions, Lepra integrated the WG-SS via a screener that worked as a skip logic. A sample of 2,091 beneficiaries were asked: “Do you have any difficulties doing certain activities because of a different health problem” (i.e. different from leprosy and/or lymphatic filariasis)? If they responded positively, they would proceed to the WG-SS questions.
Before sharing the analysis of the first year results of the WG-SS questions in Bangladesh, it should be noted that for a variety of reasons WG-SS Question 2 (Do you have difficulty hearing, even if using a hearing aid?) was not
included in the pilot. This omission has been addressed in Year 2 of the project. Analysis of the responses to the WG-SS questions showed some surprising results. People affected by leprosy and lymphatic filariasis can develop morbidities and disabilities that affect visual, locomotive and self-care abilities. Higher percentage scores in these categories were therefore anticipated. Using the recommended cut-off point for disability as ‘a lot of difficulty’ or ‘cannot do at all’ (Mont 2017), Lepra also found high percentage scores in unexpected categories. Most notably, 13% of beneficiaries indicated difficulty in remembering or concentrating and 10% had a communication disability. Such disabilities are not associated with leprosy or lymphatic filariasis and were therefore not traditionally an area of focus in Lepra’s relations with beneficiaries.
Further disaggregation by age, disease and gender allowed for in-depth understanding of the disability prevalence found in the survey. Age appeared an important factor in explaining the high disability prevalence found among Lepra’s beneficiaries: the 50-70 and >70 age groups scored worse across all function categories. Nevertheless, prevalence of locomotive disability was still high among 15-29 year olds (18%) and 30-49 year olds (26%). The age of Lepra’s beneficiaries cannot have been the only variable explaining the high prevalence of remembering and concentrating difficulties. Even among 30-49 year olds this prevalence was high at 12%, especially compared to the national average of 0.32% (Bangladesh Bureau of Statistics 2011). Analysing the results by gender showed that, with the exception of the question on communication difficulties, the general trend showed little difference in reported difficulties between male and female beneficiaries affected by lymphatic filariasis. However, a huge difference was observed between men and women affected by leprosy.
Women affected by leprosy reported much more difficulty in seeing, walking/climbing, remembering/concentrating and most significantly in self-care. 28% of women reported ‘a lot of difficulty’ or ‘cannot do at all’ when asked about their ability to carry out self-care, compared to only 9% of men. This evidence supports research by other leprosy agencies showing that women with leprosy carry a triple burden, being discriminated against on grounds of gender, disability and leprosy stigma. This leads to late detection of leprosy and hence to higher chance of developing disabilities (ILEP, 2015). Comparing the results by disease and clinical assessment of disability for both diseases provided more notable insights. People with lymphatic filariasis reported higher levels of difficulty than those with leprosy. It is interesting to compare these results to the clinical assessments done for each beneficiary to establish ‘disability level’ according to WHO categories. For lymphatic filariasis, 13% of male and female beneficiaries were categorised as having stage 3 or 4 disease, meaning that they can only do daily activities assisted by a family member or have extreme difficulty doing such activities. When compared to the WG-SS responses, the percentage of beneficiaries reporting difficulty with mobility is much higher (36% for women, 27% for men). This result suggests that the clinical assessment might be underreporting the level of difficulty actually experienced by people affected.
The Washington Group advises against adding a screener, and Lepra’s hardest lesson learnt is that this advice ought to have been followed. Adding a screener to try to reduce bias only ended up confusing the survey takers and might have led to increased rather than decreased bias. This was partly due to problems in translating the screener: “(...) because of a different health problem?” was translated in Bengali as “(…) because of your special health problem?”, with leprosy and lymphatic filariasis being interpreted as ‘special diseases’ in Bengali culture. The screener that tried to filter out limitations in ability due to leprosy and lymphatic filariasis therefore ended up asking precisely about limitations due to these two diseases. Despite this misinterpretation of the screener, the results are still of use to assess inclusiveness for Lepra, as not all core function domains are pathologically related to leprosy or lymphatic filariasis. Internal and external discussions of the first year results of the WG-SS highlighted the need to make sure that proper referral systems are set in place. While Lepra does not have the capacity or intention to provide a range of disability services, Lepra staff and survey takers should at the very least have knowledge of where and how to refer
The situation might be the opposite with leprosy, where a Grade 2 identification means that the person has visible deformity/damage and/or severe visual impairment. 35% of female cases and 38% of male cases were identified as being Grade 2. Nevertheless, only 15% of women and 11% of men reported ‘a lot of difficulty’ or ‘cannot do at all’ with seeing. The deformities of leprosy often affect feet, but despite 3538% of beneficiaries being Grade 2 patients, only 28% of women and 23% of men reported difficulty with walking or climbing. The assessment shows a discrepancy between what clinical staff considers a disability and how affected people perceive their disability. It also highlights that while a person affected by leprosy or lymphatic filariasis might not have a disability as a consequence of their disease, they might still have difficulty with functional abilities due to other causes. Finally, Lepra analysed the WG-SS results by comparing them to reported stigma experienced by the beneficiaries. This analysis reinforced the importance of Lepra’s activities to train affected people in self-care for social and economic participation. The results showed a correlation between never attending community events or never feeling included at work/school and functional abilities. For example, among people that never attend a community event, 48% indicated not being able to do self-care at all.
respondents expressing a need for support. Failing to link to this referral system would not only be unethical. It might also raise expectations among beneficiaries that, if they are not met, it could ultimately affect beneficiary participation in Lepra’s projects. Mental health problems are associated with negative impacts on memory or concentration (Burt, Zembar et al. 1995). The 13% prevalence of memory or concentration disabilities might therefore be an indication of mental health problems among our beneficiaries. Additional research by Lepra shows that around 50% of people with leprosy and lymphatic filariasis will develop mental health problems, with disability as a major risk factor in developing these problems. Lepra needs to include the four Washington Group questions on mental health in future surveys to better understand how such issues are affecting our beneficiaries.
The Washington Group defines disability through a method that looks exclusively at impairments to body functioning. Lepra uses a holistic approach in their programmes and recognises that disability cannot be reduced to functionality only. The ICF (International Classification of Functioning, Disability and Health) model recognises that limitations to activities and restrictions to participation are equally important in defining disability (World Health Organisation 2013). By only considering impairments, the Washington Group risks presenting disability as a static measure that doesn’t show how the impact of impairments to bodily functions might be mitigated by effective assistive devices or a person’s strong social capital. Our analysis of the WG-SS results by level of stigma experienced and gender shows that these factors influence disability.
Following the success of the pilot, Lepra will be including the WG-SS questions (including Question 2) in all their future beneficiary surveys. Future surveys will also include four questions on mental health that have been finalised by the Washington Group in 2017, as mental health is becoming an increasing concern in Lepra’s work. The insights from this pilot and from future surveys deepen Lepra’s understanding of the functional abilities of their beneficiaries and how these abilities might affect both a beneficiary’s participation in a project as well as his/her daily life in general. The analysis will be used to inform project design and implementation. Health education and disease awareness is a key part of Lepra’s work. As 10% of
beneficiaries are considered to have a communication disability, the usual project outreach activities through large group sessions might not be sufficient to engage with this group. Lepra needs to find new ways of making sure their health messages reach all intended beneficiaries. More data collection and the ability to disaggregate data by disability strengthens the evidence base for Lepra’s advocacy work at local, national and international level. For example, people affected by lymphatic filariasis in India struggle to be considered as disabled by local governments, and therefore lack access to welfare benefits. The results from Lepra’s analysis support the organisation’s efforts to get access to such benefits for many more beneficiaries.
Bangladesh Bureau of Statistics (2011). Report of the Household Income & Expenditure Survey 2010. Dhaka, Bangladesh, Bangladesh Bureau of Statistics. Burt, D. B., et al. (1995). "Depression and memory impairment: A meta-analysis of the association, its pattern, and specificity." Psychological Bulletin 117(2): 285-305. Census of India (2011). Measurement of Disability through Census - National Experiences: INDIA. India, Office of the Registrar General & Census Commissioner. ILEP (International Federation of Anti-Leprosy Associations) (2015). Triple Jeopardy: Tackling the Discrimination Facing Girls and Women with Leprosy, ILEP. Madans, J. H. (2017). Disability Measurement and the Washington Group on Disability Statistics. International Training Workshop on Disability for NGOs, London, UK. Mont, D. (2017). The Importance & Feasibility of Disaggregation by Disability Status. International Training Workshop on Disability for NGOs, London, UK. Washington Group on Disability Statistics (2016). "Short Set of Disability Statistics." Retrieved 18th May, 2017, from http:// www.washingtongroup-disability.com/washington-group-question-sets/short-set-of-disability-questions/. World Bank (2011). World Report on Disability. Washington DC, World Bank. World Health Organisation (2013). How to use the ICF: A practical manual for using the International Classification of Functioning, Disability and Health (ICF). Exposure draft for comment. Geneva, Switzerland, World Health Organisation. Photography by Lepra and Peter Caton
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