Palliative care needs among patients with advanced illnesses in Bhutan.

BACKGROUND: Palliative care improves the quality of lives of patients and families affected by advanced illnesses through the prevention and relief of suffering. While palliative care is well established in developed countries, it is inadequate or non-existent in most developing countries. Palliative care is an emerging concept in Bhutan, a tiny Himalayan Kingdom. A small community palliative care service is available in the national referral hospital with three dedicated inpatient palliative care beds. This study explored the needs for palliative care among patients diagnosed with advanced illnesses and is a component of a larger project aimed to inform a suitable palliative care model for the country. METHODS: This is a cross-sectional descriptive study. A survey, using a structured questionnaire including the EORTC QLQ-C30, was carried out among patients with advanced illness in hospitals, primary care units and communities across the country. Purposeful and snowball sampling strategies were used to recruit study participants. RESULTS: Seventy (76%), out of 93 eligible patients, agreed to participate in the survey. Participants reported low to moderate scores on physical, role, emotional, cognitive and social functioning, a moderate score for the global health/ quality of life scale and moderately high (worse) scores in symptoms including fatigue, pain, insomnia, loss of appetite and the financial impact from the disease. CONCLUSIONS: The symptom burden experienced by patients affected by advanced illnesses demonstrates the need for palliative care in Bhutan. These findings will help inform the development of a public health-focused palliative care model, modified to the Bhutanese context, as recommended by the World Health Organization.

Health-related quality of life of patients with multidrug-resistant tuberculosis in Yemen: prospective study.

BACKGROUND: Substantial efforts are currently focused on investigating and developing new multidrug-resistant tuberculosis (MDR-TB) drugs and diagnostic methods. In Yemen, however, the evaluation of health-related quality of life (HRQoL) and the effect of current MDR-TB treatment on the QoL are commonly ignored. This study evaluated the HRQoL during and after treatment and identified the risk factors that are predictive of HRQoL score differences. METHOD: A prospective cohort study was conducted in four of the five main MDR-TB centres in Yemen. The patients confirmed with MDR-TB completed the SF-36 V2 survey at the beginning of treatment, end of treatment (continous phase) and at the 1 year follow-up after completing treatment. A total normal base score (NBS) of < 47 reflects impairment of functions, whereas a mental component summary (MCS) score of < 43 indicates a risk of depression. RESULT: At the beginning of treatment, the mean scores for all health domains were < 47 NBS points (PF = 40.7, RP = 16.1, BP = 21.6, GH = 28.3, VT = 14.55, SF = 25.9, RE = 13.7, and MH = 14.7). At the completion of treatment, all eight health domains increase compare to beginning of treatment (PF = 59.3, RP = 31.1, BP = 40.9, GH = 48.5, VT = 30.5, SF = 46.6, RE =26.6 & MH = 27.7), but a follow-up duration of 1 year after completing treatment showed decreased NBS points in all domains (PF = 51.5, RP = 30.6, BP = 39.1, GH = 47.8, VT = 30.2, SF = 43.7, RE =26.4 & MH = 27.2). Age, history of streptomycin use, baseline lung cavity, marital status and length of sickness before MDR-TB diagnosis were predictive of in PCS score differences, whereas, age, smoking, baseline lung cavity, stigma, residence, marital status and length of sickness before MDR-TB diagnosis were predictive of MCS scores differences. CONCLUSION: The length of sickness before DR-TB diagnosis was found to be predictive of the trends in both PCS and MCS scores. Despite the positive outcome of MDR-TB treatment, the low HRQoL scores obtained for all heath domains and especially for mental health reflect a high depression status of patients even after 1 year of completing therapy. Moreover, the poor HRQoL, particularly regarding mental health, of study participants at the end of treatment demands the need for urgent attention from national tuberculosis control programme managers. Therefore, the Yemen Ministry of Health and the National Tuberculosis Control Programme should implement an intervention programme to enhance HRQoL at the end of treatment to avoid any further negative consequences of MDRTB in patients after treatment. Moreover, The HRQoL data of patients with MDR-TB must be collected at the different stages of MDR-TB treatment to provide an additional parameter for assessing the effectiveness of the treatment programme. TRIAL REGISTRATION: SNOYEM 1452. Registered 01 February 2013.

Abandono del tratamiento en tuberculosis multirresistente: factores asociados en una región con alta carga de la enfermedad en Perú / Abandonment of therapy in multidrug-resistant tuberculosis: Associated factors in a region with a high burden of the disease in Perú

Resumen Introducción. En la tuberculosis multirresistente, el abandono del tratamiento constituye un grave problema de salud pública que afecta la calidad de vida de los pacientes, sus familias y la comunidad. El enfrentarlo supone una carga para los sistemas sanitarios debido a que provoca fuentes de transmisión libre en la comunidad e incrementa la prevalencia y la mortalidad. De ahí, la necesidad de investigar los factores asociados con esta situación. Objetivo. Determinar los factores de riesgo asociados con el abandono del tratamiento en pacientes con tuberculosis multirresistente en la región de Callao (Perú). Materiales y métodos. Se hizo un estudio analítico de casos y controles (80 casos y 180 controles) en tratamiento entre el 1° enero del 2010 y el 31 diciembre del 2012. Los factores se determinaron mediante regresión logística, y se calcularon los odds ratios (OR) y los intervalos de confianza (IC) del 95 %. Resultados. En el análisis multivariado se determinaron los siguientes factores de riesgo: no tener conocimiento de la enfermedad (OR=23,10; IC95%: 3,6-36,79; p=0,002); no creer en la curación (OR=117,34; IC95%: 13,57-124,6; p=0,000); no tener apoyo social (OR=19,16; IC95%: 1,32-27,77; p=0,030); no considerar adecuado el horario de atención (OR=78,13; IC95%: 4,84-125,97; p=0,002), y no recibir los resultados de laboratorio (OR=46,13; IC95%: 2,85-74,77; p=0,007). Conclusión. Los servicios de salud deben esforzarse en la determinación precoz de las condiciones que podrían convertirse en factores de riesgo, lo cual ayudaría a implementar preventivamente intervenciones efectivas, rápidas y de alto impacto.

Abstract Introduction: In the context of multidrug-resistant tuberculosis, abandonment of therapy represents a serious public health problem that affects the quality of life of patients, families, and communities. Managing this phenomenon places a burden on health systems since it causes free sources of transmission in the community, thereby increasing prevalence and mortality. Thus, there is a need to study factors associated with this problem. Objective: This study sought to identify risk factors associated with the abandonment of therapy by patients with multidrug-resistant tuberculosis in the Peruvian region of Callao. Materials and methods: We conducted an analytical case-control study (cases=80; controls=180) in patients under treatment from January 1st, 2010, to December 31, 2012. Risk factors were identified using logistic regression; odds ratios (OR) and 95% confidence intervals (CI) were calculated. Results: The multivariate analysis identified the following risk factors: Being unaware of the disease (OR=23.10; 95% CI 3.6-36.79; p=0.002); not believing in healing (OR=117.34; 95% CI 13.57-124.6; p=0.000); not having social support (OR=19.16; 95% CI 1.32-27.77; p=0.030); considering the hours of attention to be inadequate (OR=78.13; 95% CI 4.84-125.97; p=0.002), and not receiving laboratory reports (OR=46.13; 95% CI 2.85-74.77; p=0.007). Conclusion: Health services must focus on the early detection of conditions that may represent risk factors to proactively implement effective, rapid and high-impact interventions.

Integrating tuberculosis and mental health services: global receptivity of national tuberculosis program directors.

A global survey of National Tuberculosis Program (NTP) directors. To assess the perceived mental health needs of persons with tuberculosis (TB), current practices, and receptivity to integrating evidence-based mental and substance use treatment into national TB guidelines. Semi-structured survey of NTP directors from 26 countries of all income levels using a standardized questionnaire. Of the 26 countries, 21 were classified as high incidence and/or burden countries for TB, TB and human immunodeficiency virus coinfection, and/or drug-resistant TB. Two NTPs included routine screening for any mental disorder, four assessed alcohol or drug use, and five had standard protocols for the co-management of disorders. If effective and low-cost integrated care models were available, 17 NTP directors felt that it was highly likely, and five somewhat likely, that their NTPs would integrate mental health treatment into national TB guidelines and services. The main perceived barriers to service integration were limited capacity, not recognizing mental health as a problem, insufficient resources, and TB-related social stigma. NTPs currently do not address mental disorders as part of routine practice. Nevertheless, receptivity is high, which creates a ripe opportunity to integrate the management of TB and mental disorders into the policies and guidelines of NTPs worldwide. .

A public health approach to palliative care in the response to drug resistant TB: an ethnographic study in Bengaluru, India.

BACKGROUND: The treatment of Multidrug-Resistant Tuberculosis represents one of the most significant challenges to global health. Despite guidance on improving treatment outcomes, there is little focus on how to support individuals in their suffering. Palliative care is therefore proposed as a necessary component in the global strategy to fight Tuberculosis. We aim to describe the informal resources and networks available to persons affected by Multidrug-Resistant Tuberculosis, how they are accessed and how they are integrated into everyday lives. METHODS: In-depth ethnographic research was conducted in Bengaluru, India. Informal interactions and observations were recorded across a range of palliative care and tuberculosis treatment providers over a month-long period. In addition, ten individuals with Multidrug-Resistant Tuberculosis were asked for in-depth interviews, and five agreed. RESULTS: Multidrug-Resistant Tuberculosis caused a dynamic chain of events that transgress through physical and psychological domains to cause human suffering. Participants utilised support from their family and friends to build a network of care that was of therapeutic benefit. Informal care networks were similar to the holistic model of care practice by specialist palliative care services and represent an underused resource with enormous potential. CONCLUSION: Patient suffering is poorly addressed in current Tuberculosis treatment programmes. A community-based palliative care approach may extend peoples' support networks, helping to alleviate suffering. Further research on existing support structures and integration of these services into Tuberculosis control programmes is required.

Multidrug-resistant tuberculosis treatment programmes insufficiently consider comorbid mental disorders.

The successful treatment of multidrug-resistant tuberculosis (MDR-TB) is a global health priority and a key pillar of the World Health Organization's (WHO's) End TB strategy. There has been significant global investment in diagnostic capabilities in recent years. However, we argue that the mental distress of those with MDR-TB and their families continues to be overlooked by TB programmes. Priorities in the End TB Strategy of 'patient-centred care' and 'patient support' are still to be delivered in practice in many low-income settings, and in particular consideration of mental distress. Our experience of undertaking MDR-TB operational research in China, Pakistan, Bangladesh, Nepal and Swaziland has given us detailed insight into the challenges facing patients, their families, health professionals and wider health systems. We are increasingly concerned that psychosocial support, and particularly support focused on mental health, is being insufficiently addressed in national MDR-TB programmes. We suggest that the presence of comorbid mental disorders reduces treatment adherence. We recommend the trialling within TB programmes of brief screening tools for common mental disorders and the incorporation of principles from the WHO Mental Health Gap Action Programme programme into TB programme treatment guidance. Our work in Nepal also suggests that brief psychological counselling delivered by non-specialist counsellors may be feasible.

Determinants of multidrug-resistant tuberculosis in Henan province in China: a case control study.

BACKGROUND: Multi-drug resistance (MDR) has been a cause of concern for tuberculosis (TB) control in both developed and developing countries. This study described the characteristics and risk factors associated with MDR-TB among 287 cases and 291 controls in Henan province, China. METHODS: A hospital-based case-control study was conducted between June 2012 and December 2013. The study subjects were selected using multistage probability sampling. Multivariate conditional logistic regression models were used to determine the risk factors associated with MDR-TB. RESULTS: The following risk factors for MDR-TB were identified: previous TB treatment (AOR = 4.51, 95% CI: 3.55-5.56), male sex (AOR = 1.09, 95% CI: 0.24-1.88), high school or lower education degree (AOR = 1.87, 95% CI: 1.27-2.69), unemployment (AOR = 1.30, 95% CI: 0.78-2.52), long distance of residence from the health facility (AOR = 6.66,95% CI: 5.92-7.72), smoking (AOR = 2.07, 95% CI: 1.66-3.19), poor knowledge regarding MDR-TB (AOR = 2.06, 95% CI: 1.66-2.92), traveling by foot to reach the health facility (AOR = 1.85, 95% CI: 1.12-3.09), estimated amount of time to reach the health facility was greater than 3 h (AOR = 1.42, 95% CI: 0.51-2.35), social stigma (AOR = 1.17, 95% CI: 0.27-2.03), having an opportunistic infection (AOR = 1.45, 95% CI: 0.58-2.4), more than 3 TB foci in the lungs (AOR = 1.98, 95% CI: 1.49-3.25), total time of first treatment was more than 8 months (AOR = 1.39, 95% CI: 0.65-2.54), adverse effects of anti-TB medication (AOR = 2.39, 95% CI: 1.40-3.26), and more than 3 prior episodes of anti-TB treatment (AOR = 1.83, 95% CI: 1.26-2.80). CONCLUSION: The identified risk factors should be given priority in TB control programs. Additionally, there is a compelling need for better management and control of MDR-TB, particularly through increasing laboratory capacity, regular screening, enhancing drug sensitivity testing, novel MDR-TB drug regimens, and adherence to medication.

Social, economic, and psychological impacts of MDR-TB treatment in Tijuana, Mexico: a patient's perspective.

SETTING: The State of Baja California, Mexico, had the highest prevalence of multidrug-resistant tuberculosis (MDR-TB) in Mexico in 2009. OBJECTIVE: To understand the socio-economic burden of MDR-TB disease and its treatment on patients in Tijuana and Mexicali, Mexico. DESIGN: From July to November 2009, qualitative interviews were conducted with 12 patients enrolled in a US-Mexico binational MDR-TB treatment program, Puentes de Esperanza (Bridges of Hope), which was designed to support MDR-TB patients. In-depth interviews were coded to identify major themes in patient experiences of MDR-TB diagnosis and care. RESULTS: While some patients were able to maintain their pre-MDR-TB lives to a limited extent, most patients reported losing their sense of identity due to their inability to work, social isolation, and stigmatization from family and friends. The majority of participants expressed appreciation for Puentes' role in 'saving their lives'. CONCLUSION: Being diagnosed with MDR-TB and undergoing treatment imposes significant psychological, social and economic stress on patients. Strong social support elements within Puentes helped alleviate these burdens. Improvements to the program might include peer-support groups for patients undergoing treatment and transitioning back into the community after treatment.

When control measures fail.

This article describes the author's long ordeal after contracting multi-drug resistant tuberculosis (MDR-TB) from a patient in the hospital where she works. The struggle to win the battle with MDR-TB took her to a hospital far from home where she underwent surgery. In addition to physical pain, the author had to also endure frustration, depression, and loneliness.