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Proposing a Call for Action for Neglected Mental Disorders

by Siddhesh Zadey1,2, Arthi Kozhumam1, Shantanu Srivatsa1

Affiliations:

  1. Duke Global Health Institute, Durham, North Carolina
  2. Association for Socially Applicable Research (ASAR), India

Correspondence: Arthi Kozhumam (ask59@duke.edu)


Executive Summary

Of the total health funding, limited resources are driven towards mental health. The focus of research, policy, and practice in global mental health (GMH) are disproportionately and inequitably allocated. Though the Diagnostic and Statistical Manual of Mental Disorders (DSM) describes over 300 diagnoses that lead to disability and fatality, the GMH resources are dedicated to a handful conditions such as depression, schizophrenia, and substance use. Several mental disorders are overlooked, citing low prevalence. However, this could stem from the lack of understanding towards their population-level expression, which, in turn, is due to limited resource prioritization. We deem such chronically disabling conditions to be ‘neglected mental disorders’ (NMDs). We discuss obsessive-compulsive disorder, emotional abuse, personality disorders, and narcolepsy as the NMD case studies and argue for a more inclusive GMH that promotes diversified resource allocation. We propose the inclusion of NMDs in the GMH research framework; point to potential health, economic, and societal benefits; and indicate how they could be incorporated into the health policy agenda through the involvement of possible stakeholders.

Problem Scope

Global mental health (GMH) involves the study, research, and practice of improving mental health for all people worldwide. Neuropsychiatric disorders account for over 10% of the global burden of diseases (GBD) and are the leading contributor to disabilities (Hofmeijer-Sevink et al. 2018). Three sets of phrases contributing to 61% of all mental health papers correspond to – neurodegenerative and cognition disorders; depressive, anxiety, and personality disorders; and substance use and addictive disorders (“RAND” 2016).

In the vast body of medical and health research, mental health literature continues to be limited, arguably due to the decreasing funding towards mental health conditions. The National Institutes of Health (NIH)’s yearly budget is $31 billion, but NIMH’s annual budget is only $1.4 billion and has declined more than 10% in the past five years, affecting funding for both basic research and clinical trials (“RAND” 2016).

While the NIH budget for mental disorders continues to decrease, the global prevalence of mental disorders and comorbidity of mental health disorders with conditions such as COVID-19 is only increasing (Steel et al. 2014; Wang, Xu, and Volkow 2021). Meta-analyses that describe trends in mental disorder prevalence often focus on “common” disorders involving mood, anxiety, and substance use, while ignoring other conditions that may not exhibit as high of a global or local prevalence or be as well-known to the public. GMH must make room for other disorders beyond the popular topics in order to address the burden of lesser-known but equally important mental health conditions, and can do this by investing in research, funding, and advocacy for them (Patel and Farmer 2020).

Analysis of Neglected Mental Disorder Case Studies

The Diagnostic and Statistical Manual of Mental Disorders (DSM) describes approximately 297 conditions leading to disability and fatality (“DSM-5” 2013). However, policy and public discourse seem to be narrowly focused on depression, schizophrenia, and substance use, arguably due to their high population-level prevalence. Even among the total resources and funding given to mental health, there is little to no prioritization of funds for research and awareness on what we deem ‘neglected mental disorders’ (NMDs).

We broadly define NMDs as chronically disabling mental disorders overlooked due to their lower global prevalence and the general lack of understanding of disease expression in the population-level burden of disease. Here, we focus on four disorders as case studies for NMDs and their implications for both mental and physical major health conditions (MHCs). These disorders are obsessive-compulsive disorder (OCD), emotional abuse, personality disorders, and narcolepsy. Although many such NMDs exist as per our loose definition, we utilize case studies of four such disorders to make an argument for a more inclusive GMH that promotes diversified resource allocation. These four were specifically chosen due to our research interests and backgrounds, and for their diversity of presentations and comorbidities.

Below, we introduce the proposed NMDs (see Tables 1-4) and discuss implications for including them in the GMH agenda for research and funding through the lens of social, health, and economic benefits (see Figure 1). By bringing attention to NMDs through efforts such as providing individual disorder status to each condition, learning their relationships with and impacts on MHCs, and promoting increased economic and public awareness for their research, we will make GMH a more inclusive and understood field. The increasing global prevalence of mental disorders, as well as comorbidity of mental conditions with COVID-19, must be met with increased funding, research, and public recognition.

Narcolepsy

Narcolepsy is a chronic disabling condition that involves excessive daytime sleepiness, chronic fatigue, and in several cases cataplexy i.e. loss of muscle tone during waking time evoked by positive emotions (Kornum et al. 2017). In the US, studies of insurance claims databases found that narcolepsy prevalence was 79.4/100,000 and the annual incidence was 7.67/100,000. The prevalence was highest for the 21-30 years age group (128.5/100,000) and greater in females for all age groups except 0-10 years (Carter, Acebo, and Kim 2014; Scheer et al. 2019). However, reliable global estimates for prevalence, incidence, mortality, and morbidity are largely missing, making it challenging to include narcolepsy in the GMH policy agenda. Limited and scattered data suggests incidence and prevalence rates of 0.87/100,000 and 2.06/100,000, respectively (Spruyt 2020). The median age of onset is as young as 16 years and the condition is known to be life-long even in the presence of treatment (Thorpy and Hiller 2017).Hence, if measured, the disability burden may be high even despite low prevalence/incidence rates.

There is also a high healthcare, economic and social cost burden for unattended narcolepsy. A matched case-control study found that annualized healthcare service utilization costs including medicines are double for patients with narcolepsy than patients without narcolepsy ($11,702 vs $5,261) (Black et al. 2014).Additionally, these patients have 117% greater emergency department visits than controls pointing towards greater injury risk and incidents. People with narcolepsy had 152 (per capita) more short-term disability days that lead to a 200% greater average cost per employee on employers (Black et al. 2014).

The Burden of Narcolepsy Disease (BOND) Study in the US with 9,312 narcolepsy patients found that these patients have about 3.9, 4.4, 2.5, 3.8 3.5, and 4.1 times greater odds for psychiatric disorders depressive, bipolar, anxiety, schizophrenia and psychotic, substance use, and suicides than matched controls, respectively. Further, these people have 4.3, 41.8, and 2.9 times higher odds for utilization of narcolepsy drugs, stimulants, and antipsychotics, respectively (Carter, Acebo, and Kim 2014; Ruoff et al. 2017). The most common misdiagnoses for narcolepsy are depression and sleep apnea (Scheer et al. 2019; Thorpy and Hiller 2017).Lack of diagnosis, high rate (60%) of misdiagnosis, and delay in diagnosis for up to 10-12 years all greatly contribute to the narcolepsy burden (Carter, Acebo, and Kim 2014).Hence, the potentially high disability burden along with the economic and social costs necessitate more research, policy, and public attention towards this NMD. 

Obsessive-Compulsive Disorder

Obsessive-compulsive disorder (OCD) is a neuropsychiatric disorder characterized by repetitive behaviors, impulses, and thoughts, along with compulsions that attempt to reduce these intrusive obsessions (Pittenger et al. 2005).It was considered a sub-dimension of depression for many years, and it was only recently in the 1980s that this idea was challenged (Pittenger et al. 2005). Globally, the lifetime prevalence of OCD is thought to be 1.3% in the general population with women having 1.6 times higher risk of experiencing OCD than men (Fawcett, Power, and Fawcett 2020).  An obstacle to successfully managing OCD is the heterogeneous presentation, differing widely between sex, phenotype, and comorbid conditions (Stein 2019).Furthermore, the presence of an underlying comorbid condition such as depression often makes individuals non-responsive to treatment (Stein 2019; Pallanti et al. 2011).For example, bipolar disorder with comorbid OCD is highly difficult to treat, as the treatments not only diverge but conflict as selective serotonin reuptake inhibitors (SSRIs) for OCD can exacerbate bipolar symptoms (Stein 2019; Pallanti et al. 2011).

 In addition, trauma such as traumatic brain injury (TBI) and strep throat can cause OCD like symptoms (Stein 2019; Hiott and Labbate 2002).The convergence of OCD with all major disease categories (I, II, III) means that prevalence globally may be higher than previously thought, or aggregated with what is thought to be non-comorbid depression or schizophrenic disorders (Pittenger et al. 2005; Stein 2019; Pallanti et al. 2011; Cheng et al. 2019).One potential method to cast a wider net could be task shifting through the use of community health workers or non-specialist health workers for population-level OCD screens.

Borderline Personality Disorder

Personality comprises a wide and diverse category of disorders that are each not given the same grant funding or weight in the GBD. Borderline personality disorder (BPD) is a mental illness characterized by distorted self-image, impulsiveness, extreme emotions, and intense and unstable relationships (Abramovitch et al. 2019; “Addiction Center” 2021; Trull et al. 2018).BPD is consistently provided less yearly funding than bipolar disorder, with research finding the level of NIH funding for BPD to not reflect the magnitude of psychosocial morbidity, mortality, and health expenditures associated with the disorder (Zimmerman and Gazarian 2014).

People with BPD often suffer comorbid anxiety, depression, and eating disorders, as well as have high rates of substance abuse, suicidal behaviors, and non-suicidal self-injury (“Addiction Center” 2021; Cristea et al. 2017).The global prevalence of personality disorders has been estimated as 7.8%, with BPD specifically having a global pooled prevalence of 1.8% (Winsper et al. 2020; Skodol 2021). BPD impacts not only mental and physical health for individuals but also contributes to work productivity costs, increased number of psychiatric and non-psychiatric hospitalizations, and work- and family-related social problems (Powers and Oltmanns 2012).

When personality disorders are treated, there are significant reductions in healthcare utilization for up to 3 years following treatment completion (Meuldijk et al. 2017).Treatment of BPD has been shown to result in remission of co-occurring major depressive disorder (MDD) as well as overall improvements to physical health, especially obesity (Cristea et al. 2017; Powers and Oltmanns 2012).However, treatment options for BPD remain limited to psychotherapy, with no drugs currently approved by the FDA specifically for BPD treatment (“Addiction Center” 2021).Due to the interrelatedness of BPD with mental and physical disorders, as well as with overall healthcare and productivity costs, further research must be conducted on treatment options and clinical screening tools.

Emotional Abuse

Emotional abuse is an important aspect associated with Intimate Partner Violence (IPV) and child abuse that is often neglected in the context of physical or sexual trauma (Wilson and Widom 2009).Emotional abuse is a dangerous precursor for many other mental illnesses such as depression, anxiety, post-traumatic stress disorder (PTSD), and suicidal tendencies (Ohtaki et al. 2019). The absence of gold standard and validated measures, or prevalence studies, make burden assessments challenging for this condition. Physical abuse and IPV are highly comorbid with emotional abuse and have known health and social loss burden. However, burden estimates exclusive to emotional abuse in cross-cultural settings are missing (Norman et al. 2012; Ohtaki et al. 2019; Wilson and Widom 2009).

Due to the fact that emotional abuse is strongly tied to gender inequalities, gender violence, and societal violence, understanding how it expresses itself within a society requires ethnographies and the development of screening tools and interventions tailored within the society (Ohtaki et al. 2019; Norman et al. 2012).

Policy Recommendations

The main recommendations of this policy proposal can be summarized as follows: 1) adding neglected mental disorders to ongoing global burden of disease studies, 2) researching similar case studies on other potential NMDs as part of and to support larger global commissions, 3) funding research on NMD comorbidity associations with major health conditions to improve diagnostics and treatments for health services usage cost reduction, and 4) enhancing public awareness about NMDs through civil societies and support groups under the GMH umbrella.

Adding Neglected Mental Disorders to Global Burden of Disease

Given the limited and scattered evidence on prevalence, incidence, mortality, and morbidity for the abovementioned NMDs, providing individual disorder status to these conditions and others like them in the GBD studies is vital for bringing NMDs to the policy discourse. Since GBD studies garner attention from researchers, funders, and policymakers, the inclusion of NMDs would benefit their visibility, as well as that of mental health as a whole, as a pressing problem that needs addressing.

Researching NMD case studies at the global level

This policy brief presents case studies on four NMDs with a multidimensional assessment of burden, relationship, and impact on other major health conditions. Similar NMD case studies should be included in major research outlets. Initiating national and international commissions (such as a Lancet Commission) on NMDs can help in producing rigorous research consequential to global policy actions as was observed for global surgical care in 2015 (Meara et al. 2015). NMDs could be added as their own category, similar to neglected tropical disease (NTDs) for funding and reporting (focused conferences and journals) (“The New York Times” 2007). Highlights from such case studies can be of high utility to advocacy groups, intergovernmental actors (World Health Organization, United Nations, etc.), and other stakeholders to raise public interest and awareness.  

Funding research on NMD comorbidities with major health conditions

Despite the NIH and National Institute of Mental Health (NIMH) funding significant mental health research, few funders have explicit definitions of mental health or specific knowledge about what research areas other funders are supporting (Davies and Campling 2003). Research on comorbidity associations of NMD can be accomplished through a diagonal approach, by incorporating research on NMD and other mental health conditions within existing programs for chronic illnesses, maternal and child health, and injury. Not only does this add to the existing literature on GMH expression and comorbidity, but it will also allow for cost-effective interventions by rolling NMD research within established protocols. Furthermore, NMD comorbidity research can reduce long term healthcare usage by preventing complications associated with chronic illnesses.

Public awareness about NMDs

Increasing public awareness of NMDs is essential to increasing education, cultural competency, and collaborative research on these disorders. We note the following advocacy groups that can be potential collaborators in designing peer-based interventions, increasing community awareness, and fostering research and case studies on these disorders. A major BPD stakeholder could be the National Education Alliance for Borderline Personality Disorder (NEABPD) that hosts video courses and conferences and sponsors publications (“National Education Alliance for Borderline Personality Disorder” 2021). The International OCD Foundation provides educational materials and sponsors research on global OCD (“International OCD Foundation” 2021). Emotional abuse has a variety of stakeholders that can address the trauma at different stages, but one major group is Global Women Connected that seeks to empower, connect and uplift women globally through education and shared experience (“Global Women Connected” 2021). Finally, the push for narcolepsy can be elevated by the Narcolepsy Network, an advocacy/support group, and Wake Up Narcolepsy, a non-profit support group (“Narcolepsy Network” n.d.; “Wake Up Narcolepsy” n.d.). The collaborative engagement of advocates, policymakers, affected individuals, and healthcare professionals can generate awareness and support for the inclusion of diverse disorders in the GMH framework.

Anticipated Challenges

Though we propose the inclusion of both the proposed and other potential NMDs within the GBD as well as increased research and funding for these, we acknowledge a possible counter-argument that GMH is filed in its infancy and that societal tolerance for even the common mental disorders depression and anxiety is low. Hence, it would be only sensible to increase advocacy for major mental health conditions first and then expand to others. However, as noted in our case studies, NMDs are highly comorbid with many major health conditions and have severe mental, physical, and social impacts. In addition, expanding the scope of mental health research beyond simply a few major disorders is necessary in order to develop a robust and inclusive landscape of GMH and allow for beneficial, specifically tailored interventions. While there might be specific challenges with targeting a seemingly non-specific constellation of NMDs, benefits at all levels outweigh these costs.

Conclusion

Overall, we propose the addition of NMDs as individual disorders to GBD studies and call for commissions to make global mental health more inclusive. Awareness, research, and funding for these conditions must be enhanced in order to understand the specific disorders and their implications for the broader field of global mental health.

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Tables

Table 1. Associations between NMDs and Major Health Condition(s).

Information regarding the strength of association (OR) between selected neglected mental disorders and major health conditions to provide context for the need for inclusion of NMDs to the GBD. See Tables 2-4 for additional information.

Table 2. Relevant Information on NMDs Chosen.

Providing information regarding metrics, risks, comorbidity, and treatment for selected neglected mental disorders to provide background for the need for inclusion of NMDs to the GBD.

Table 3: Problems, Challenges, and Solutions for selected NMDs.

Providing significant problems, challenges, and solutions so that we can justify the inclusion of these disorders within the mental health agenda

Table 4. Relevant Literature Regarding NMD Association with MHCs.

Information linking NMDs to selected MHCs.

Figures

Figure 1. Exemplary Calls for Action on Specific Problems for narcolepsy (purple), BPD (green), emotional abuse (orange), and OCD (blue).

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