Dr Tamar Gabunia from Georgia said that people with TB and mental illness are at a greater risk of poor health-seeking behaviour and treatment adherence, and thus more at risk to have adverse treatment outcomes including morbidity, mortality, drug-resistance and ongoing disease transmission. Psychiatric co-morbidity in TB patients has been found to relate to higher levels of physical and social disability. TB and mental illness share common risk factors including poverty, substance abuse and homelessness.
Multi-Drug Resistant TB or MDR-TB (when patients are resistant to two most effective drugs: Isonoazid and Rifampicin), and Extensively Drug-Resistant or XDR-TB (when they become resistant to Isoniazid and Rifampicin plus to at least one of three second-line injectables and fluroquinolones).
Experts at the 48th Union World Conference on Lung Health shared their insights if there is an interface between MDR-TB, XDR-TB, PLHIV on antiretroviral therapy (ART) and mental disorders, and how can we address this acute need.
Mental disorders are under-recognized and under-reported
Dr Samson Malwa Haumba of Swaziland said that serious mental disorders such as depression, anxiety, and delirium, are under-recognized or under-reported in patients with MDR-TB, XDR-TB and TB-HIV co-infection, despite they form a substantial part of the suffering for not just patients but also their families. These symptoms effect physical health, quality of life, and ability to respond to life-altering disease symptoms and medication side effects.
Dr Haumba added that palliative care is widely accepted as best practice for chronic disease management and works to promote and maintain quality of life.
According to the World Health Organization (WHO), palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Despite guidelines on palliative care for patients of MDR-TB and XDR-TB, it is a missed opportunity for improving treatment outcomes as we are failing to implement them.
International guidelines on Palliative Care for drug resistant TB exist since past eight years. In a Geneva meeting in 2010, global TB experts made a declaration and gave a call for action to reinforce and incorporate palliative care into global MDR-TB and XDR-TB control.
Dr Haumba stressed that the principles of palliative care can be applied to any condition, irrespective of clinical setting. Its approach includes considering physical, psychological, social, and spiritual health.
Human dignity and justice
Palliative care is based on sound ethics framework. It is about human dignity as it gives special attention to unique needs, sensitivities and sensibilities of vulnerable people, and prevents discrimination. Palliative care is about justice too as it strives for equitable access to standard, quality healthcare and optimizes risk: benefit ratio for all patients.
Dr Haumba said there are several benefits of palliative care for patients of MDR-TB and XDR-TB. It improves symptom relief such as reductions in pain, fatigue, dyspnea, insomnia, depression and anxiety. Family and caregivers are more content with quality of care as palliative care component improves pain management, causes higher levels of emotional support for both patient and family, and improves treatment with respect, and overall improvement in quality of life.
Palliative care for MDR-TB and XDR-TB patients may also attend to cultural aspects of care, social aspects of care (with management of mental disorders for instance), spiritual and religious aspects, and end of life care.
Dr Haumba added that palliative care is associated with significantly reduced length-of-stay in the hospital and substantial reductions in average total costs per admission in addition to improvements in clinical outcomes and survival of MDR-TB and XDR-TB patients.
Patient-centred care reduces TB stigma
TB makes vulnerable people, more vulnerable: said Dr Hala Jassim AlMossawi, Senior Director of Technical Support, University Research Co., LLC. TB patients often experience psychological and social suffering and their basic rights may be negated. Stigma related to TB is a major (and preventable) barrier to access to healthcare, said Dr AlMossawi.
Dr AlMossawi added that TB patients deal with enacted stigma when they face discrimination due to social inferiority, highlighted through people 'running away' from them for example.
Most importantly Dr AlMossawi underlined that TB patients often deal with perceived or internalized stigma or self-stigma or shame, when they feel a deepening sense of inferiority, resulting from fear of enacted stigma, shown by patients hiding their diagnosis from others, or feeling ashamed of having TB. Enacted stigma may make TB patients blame themselves which fuels self-stigma. Self-stigma often manifests in patients as a loss of self-esteem, dignity, fear and/or shame.
Dr AlMossawi shared that up to 70% of pulmonary TB cases were found to have anxiety or depression. Common mental disorders associated with TB are characterized by a broad range of depressive, anxiety or somatoform symptoms, including irritability, insomnia, nervousness, fatigue and feelings of uselessness.
Dr AlMossawi recommended that we need to scale up TB education or TB support programmes for healthcare workers, individuals with TB, and key affected populations who may be at elevated risk for TB.
Antidote for self-stigma or shame is empathy. No wonder TB patient support groups or TB Clubs do wonders in empowering people and helping them cope with self-stigma.
Dr AlMossawi said that mental health programmes should be integrated within TB control programmes so that we can effectively address common mental disorders in TB patients.
‘MDR-TB patient jumps out of window every 2 years’
Shocking indeed as Dr Ignacio Monedero shared that in his experience of working with MDR-TB patients for more than 10 years, every 2 years he sadly sees a patient jumping out of the window. Dr Ignacio works with TB-HIV Department of the International Union Against Tuberculosis and Lung Disease (The Union).
MDR-TB drugs such as Cycloserine may be linked to not only suicidal tendencies, but also decrease the threshold of many psychiatric neurological conditions. “This is probably the most dangerous side effects” of this drug, said Dr Ignacio. Another MDR-TB drug linked to possible nightmares such as difficulty in thinking and may result in poorer adherence, is Efavirenz. If treating doctors are vigilant then such side effects can be averted.
TB related mental health needs are gaping and unmet. “We only cure those who take their medicines” said Dr Ignacio further highlighting the acute need to attend to mental health issues so that patients feel supported during therapy and get cured.
Is TB care geared for needs of all key affected populations?
People who use drugs, sex workers, prison inmates, people dealing with alcoholism, and other populations who may be at higher TB risk and have very unique needs, are less attended to in TB care facilities. Apart from not being judgmental, there is also other medical care related needs that must be attended to so that these care facilities can provide better services for people with unique needs.
Dr Ignacio rightly reminded the delegates with a quote from Sting: “Don’t judge me, you could be me, in another life, in another set of circumstances.” Unless we attend to unique needs of such populations, we cannot end TB, said Dr Ignacio.
He recommended that there is a need for a different and more flexible approach for TB treatment and care to cater to abovementioned key affected populations. Standard tertiary hospitals cannot effectively cater to their needs as “nobody wants these patients in the ward”.
Dr Ignacio rightly said that merely treating TB will not be enough to cure these patients as they may have co-infections or co-morbidities or mental health needs that require attention as well. Likewise, merely treating mental disorders will not cure TB. So, we need comprehensive care facilities. That is why Dr Ignacio recommended a new way of thinking to develop better models of sanitoria or supported medical shelter, especially in big cities, for key affected populations.
Dr Tamar Gabunia of Georgia pointed out that competencies of healthcare professionals within the national TB programmes are often inadequate in mental health. Also, referrals to mental health services are not always feasible due to financial or geographic access barriers. Well-functional patient support systems to address physiological, social support, social inclusion and support with employment opportunities are often critically absent.
Bobby Ramakant, CNS (Citizen News Service)
19 October 2017
(Bobby Ramakant is the Policy Director at CNS (Citizen News Service) and a WHO Director General's WNTD Awardee (2008). He is part of CNS Correspondents Team with support from the Lilly Global Health Partnership for thematic coverage of the 48th Union World Conference on Lung Health. Follow him on twitter: @bobbyramakant or visit www.citizen-news.org)
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