Mental Health – Among The ‘Most Neglected’ Of Neglected Tropical Disease Issues, Says DNDi Scientist

Neglected tropical diseases (NTDs) can lead to physical disfiguration, stress and stigmatization, which leave lifelong impacts on the mental health of many of those infected, even after the disease itself is cured. 

As the health community prepares to mark the first-ever World NTD Day on 30 January, Nathalie Strub-Wourgaft, director of Neglected Tropical Diseases at the Drugs for Neglected Diseases initiative (DNDi), talked with Health Policy Watch about the need for increased attention and action by the health community around preventing and treating NTD-related mental illnesses. Research into the NTD-mental health nexus could help inform more effective strategies for the treatment of NTDs, which comprise some 20 different parasitic and vector-borne diseases affecting 1.3 billion people worldwide, including the world’s poorest and most marginalized populations.  

Nathalie Strub-Wourgaft, Director of Neglected Tropical Diseases at DNDi.

Health Policy Watch: NTDs are a really varied group of diseases, so which ones do we know, or suspect, cause the greatest mental health burden? And how does this manifest itself in patients?

Strub-Wourgaft: Firstly, we should recognize that there are only about 50 studies looking at this problem spanning from “is there a problem” to “what are the interventions” for these 20 diseases. This shows that the amount of research that has been conducted is very minimal – absolutely lacking.

There have been some studies published recently on podoconiosis and mycetoma, which are visible, and debilitating [parasitic] diseases. A study on cutaneous leishmaniasis* estimates that 70% of individuals with both active and inactive CL will experience some degree of psychological morbidity. So one thing we can say is that in the case of NTDs that affect the skin, which are chronic, cause scarring, disfigurement, and potentially impact the capacity of young women to get married– there has been little focus on how these diseases might be associated with depression, anxiety or other forms of mental distress. For other skin diseases, we know or suspect that they must be associated with some level of depression.

However, mental health is not being studied much in relation to many of the other neglected tropical diseases, and this is a huge problem. Sleeping sickness (Human African Trypanosomiasis), for instance, can cause psychiatric symptoms. These symptoms are very acute and can be very frightening for everyone – the patients and their families. I remember meeting a woman with sleeping sickness – her husband was so sad, anxious, and seemed very depressed to be taking care of his wife, who had become a total stranger to him. She had psychotic symptoms – she couldn’t stop laughing and talking loudly, but not as a normal person. He was unable to recognize her, or bond with her as he did before. And he kept asking me, “Will she get better one day?”

When a patient has onchocerciasis, they have two major clinical symptoms. One is itching and the other is impaired vision progressing to blindness, if not treated. The top priority has so far been to prevent blindness. However, imagine, having severe, constant itching in the absence of any treatment for it, for years. People have been reported to have committed suicide, but the burden has not been measured. The progress we have made in preventing blindness is fantastic, but we need to investigate case-management much more.

In addition, we very rarely measure the impact of these diseases on caregivers. However, we know from some documented cases that there is a mental health impact. For example, with river blindness (onchocerciasis), children often take responsibility for adults who are permanently blinded as a result of the disease, when it is untreated. They must live with someone for whom there is no real cure or solution. All of this also has an impact on the caregiver’s mental health.

We know very little about the mental health burden of some diseases, such as visceral leishmaniasis. For example, what is the impact of patients being double-burdened by being both sick and poor? They are, for example, at a higher risk of contracting the disease because they are poor and live in poor conditions, and then by being sick they become even poorer because they have to travel to get treatment at a hospital, which impacts their income, and also pay for their hospital stay [which can last for a month]. Items such as food are not provided even if the treatment is free. What is the impact of all of these things on patients and family?

Lastly, we know very little about the psychological impact of Chagas disease. If you imagine what it is like for a patient. They are doing well, then they get a diagnosis, and go for treatment. But they have seen people in their families, older people, who have died as a result of -Chagas-related cardiac disease, despite perhaps having been treated for Chagas before. How can this not impair a patient’s mental state to not know what might happen, even if they do get treatment?

A villager’s eyes are being examined for African eye worm, which can cause blindness and is found in some of the same areas endemic to onchorcerciasis (river blindness), by Dr Philippe Urwotho, a medical doctor and Provincial Coordinator of the DRC’s Neglected Tropical Disease National Programme.

Health Policy Watch: You talked a bit about how people with NTDs may be stigmatized. How does stigmatization associated with NTDs exacerbate mental health issues?

Strub-Wourgaft: Exclusion. Stigma leads to exclusion from society, social life, work and growth. This is one of the biggest factors.

Social support and having strong relationships are very important for mental health. If someone is excluded from society, they don’t belong to a group anymore, so they have fewer relationships with people and social interactions. People with NTDs have also been excluded from work. But then how do they get food to survive? How do they get educated and go to school?

Health Policy Watch: Anecdotally, you describe cases of severe mental health impacts, but how do experts measure the impacts scientifically, to derive data on the extent of the NTD-related mental health burden?

Strub-Wourgaft: It is good to ask the question because asking will provoke more research. But I cannot respond very scientifically because we just don’t have the data yet.

As of now, we don’t have an effective way to measure the emotional impact of infection with a neglected disease.

For sleeping sickness, there is a high “disability weight” when calculating disability-adjusted life-years (DALYs) – perhaps accounting for the psychiatric symptoms. However, for other NTDs, the additional mental health impact of disability is not considered in the standard calculation of DALYs lost as a result of the disease. This is one of the problems of existing measures.

It would be helpful to develop an adapted tool to measure mental health impacts and disability at the point of care level. Measuring the mental health burden is not simple– you have to think about questions like, “what is the difference between sadness and depression, between mental distress and emotional suffering, and between depression and the risk of suicide? The tool would have to enable us to not only to measure the burden of mental health-related disability, but also to measure the effect of psychological treatment, or other helpful interventions.  Since NTD care and treatment is being shifted to lower levels of health systems, one has to consider tools that are appropriate for the primary healthcare level.

Currently, I don’t think there is a consensus on a tool [to measure the burden of mental health in NTDs]. I hope that such a tool will be developed, which could be used across all NTDs, exactly for the purpose of measuring the burden, so that in a few years we can come back and respond to this question with numbers. Intuitively we know the burden is there, but we don’t know enough about it.

Health Policy Watch: Going back to your descriptions of what patients may suffer – what is happening to patients right now on the ground? Is mental health incorporated into treatment in any way?

Strub-Wourgaft: No.

When you go into the field, you will not find antidepressants or medications for anxiety. Patients might not even have antihistamines for severe itching. Although there have been efforts to improve this, the problem of access to essential medicines is still huge for patients with NTDs.

For me, this is also part of Universal Health Coverage. When we speak about helping an NTD patient, if we can properly diagnose that patient and address all their co-morbidities – including the mental health component, that is, indeed, the ultimate litmus test for achieving Universal Health Coverage.

Health Policy Watch: Do you have any examples of initiatives that are trying to address the nexus between mental health and NTDs, and how would you envision this issue could be better incorporated into DNDi’s work?

Strub-Wourgaft: There have been efforts in the NTD community to create a taskforce on mental wellbeing and stigma, as reflected in a study by Bailey et al on “Neglected Tropical Diseases and Mental Health: Progress, Partnerships, and Integration”.  However, we need to do more.

For example, if we had a tool for measuring mental health, we could add a clinical scale when we conduct clinical trials for DNDi projects.  At the community level, community wellness and support should also be strengthened.

Health Policy Watch: Are there examples of initiatives in other disease areas that you would like to see replicated for NTDs and mental health?

Strub-Wourgaft: Community education and community engagement in helping people with NTDs is crucial. There is a great program, for example, developed by the Mycetoma Research Centre in Khartoum, which travels to communities and uses videos to develop awareness and also de-stigmatize the disease.

We also need to improve diagnostic and treatment tools. Obviously, the earlier you diagnose, the better options you have to treat and, therefore, avoid the consequences of not being treated well or having chronic versions of these diseases. The other thing is to continue funding R&D so that we do have tools that not only address the vector or the infectious agent, but also patients’ symptoms, case-management, and morbidity. For some diseases like Chagas, where there can be a long lag period before the disease progresses, we need to have effective treatment  to prevent cardiac diseases developing later. This will also help to reduce the mental health impact.

Universal Health Coverage is key. We must ensure that treatments  do not impose a financial burden on patients. We know that being affected by an NTD triggers a vicious cycle of poverty – you’re sick, you’re poor, to get treated you become even poorer. For children much has been written on the growth development, which in turn, impacts economic growth. We need to collectively bring more attention and advocacy, to understand the holistic management of patients, including the social and financial dimensions. We have made progress, but this needs to continue and we also have to explore other dimensions. Again, new treatments, associated with point of care diagnosis are essential to save lives, and reduce all other related morbidities, including mental health.

Health Policy Watch: WHO is developing a 2021 – 2030 Roadmap for NTDs, as the next phase of strategic planning. As an expert in the field, what commitments would you like to see emerge to incorporate the mental health component of NTDs more fully?

Strub-Wourgaft: Addressing mental health has now been identified by the WHO as a cross-cutting issue for all NTDs in the context of health and the Sustainable Development Goals. This is a great step forward because we need to investigate this much more.

In the [WHO] 2021-2030 roadmap, I am looking for a commitment that this issue is being addressed and that it has to be included in the package of care. Measuring the burden is essential, as well as helping to inform and communicate with communities, and to debunk the stigma surrounding these diseases.

But first we must start from ground level zero. We really have to understand the burden and agree that it should be measured. The roadmap will include indicators to measure progress [in reducing the NTD burden], and in that context, we need an indicator on mental health. We need to capture and understand if there is a link with suicide. We need to know how we can help these patients.

Of course, we also need to ensure that we have the all other associated diagnostic tools and essential medicines to address these needs at the point-of-care level. The NTD team at the WHO is aware and vigilant about this need to better connect with mental health. I am quite confident that this will happen, because we in this space all share the same vision, aligned with the SDGs.

*Ref: Cutaneous leishmaniasis and co-morbid major depressive disorder: A systematic review with burden estimates – by Bailey F, Mondragon-Shem K, Haines LR, Olabi A, Alorfi A, Ruiz-Postigo JA, Alvar J, Hotez P, Adams ER, Vélez ID, Al-Salem W, Eaton J, Acosta-Serrano A, Molyneux DH. PLOS Neglected Tropical Diseases 2019, doi: 10.1371/journal.pntd.0007092).

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About the Author: Dr Nathalie Strub-Wourgaft joined DNDi as Clinical Development Director in February 2009 and is now the Director of Neglected Tropical Diseases. Prior to that she worked for over 15 years in the clinical development of new health products in the private sector.

 

 

 

 

Image Credits: DNDi.

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