Methodological challenges to collecting clinical and economic outcome data: Lessons from the pilot dialysis outcomes India study.

AIM: Contemporary data on clinical and economic outcomes and quality of care amongst dialysis patients in India are not available. This pilot prospective study aimed to evaluate the feasibility of data collection and follow up within routine dialysis practice to inform setting up a dialysis registry. METHODS: An electronic instrument was developed to collect information on clinical and socio-demographic characteristics, outcome and out-of-pocket expenditure on incident patients commencing haemodialysis (HD) at two centres. Dialysis unit staff were trained in collecting and entering information on an electronic case record form. Patients were followed up at 1, 3, 6, 9 and 12 months to ascertain outcomes and treatment related costs. RESULTS: A total of 119 patients (37 females, age 47.5 ± 17.2 years) were enrolled. After 1 year, 38 (32%) patients were continuing on HD; 35 (29%) had died, 30 (25%) underwent a kidney transplant, and 16 (13%) had stopped dialysis. We noted a high prevalence of catastrophic health expenditure. Data collection was facilitated by appointing a designated staff member who received an incentive. Collection of financial information, clinical course for patients transferring out of the primary unit and the cause of death, when it occurred out of hospital was challenging. CONCLUSION: Prospective data collection of incident dialysis patients was feasible but is resource-intensive. High out-of-pocket costs force some patients to stop dialysis and can generate a sense of despair. Poor patient experiences and suspicion over the use of such data adversely affects collection of important clinical and health economic data.

Awareness to action through multi-channel advocacy for effective tobacco control in India: a case study from Bihar.

Developing a synergistic relationship between the government machinery and civil society is crucial for advancing the tobacco control movement in India. With diverse patterns of tobacco use and far reach of the tobacco industry, stringent enforcement mechanisms along with innovative and culturally appropriate advocacy efforts are imperative. In this paper, we evaluate multi- level tobacco control interventions undertaken in the Indian state of Bihar and the subsequent success achieved in strengthening government-non-government partnerships and commitment towards tobacco control in the state. Our experience shows that sustained advocacy at the policy and grassroots levels, along with willingness of the administrative machinery, can present result- oriented tobacco control initiatives at the state and grassroots levels.

Tobacco control law enforcement and compliance in Odisha, India--implications for tobacco control policy and practice.

INTRODUCTION: Tobacco use is a leading cause of deaths and disabilities in India, killing about 1.2 lakh people in 2010. About 29% of adults use tobacco on a daily basis and an additional 5% use it occasionally. In Odisha, non-smoking forms are more prevalent than smoking forms. The habit has very high opportunity cost as it reduces the capacity to seek better nutrition, medical care and education. In line with the WHO Framework Convention on Tobacco Control (FCTC), the Cigarettes and Other Tobacco Products Act (COTPA) is a powerful Indian national law on tobacco control. The Government of Odisha has shown its commitment towards enforcement and compliance of COTPA provisions. In order to gauge the perceptions and practices related to tobacco control efforts and level of enforcement of COTPA in the State, this cross-sectional study was carried out in seven selected districts. MATERIALS AND METHODS: A semi-structured interview schedule was developed, translated into Odiya and field-tested for data collection. It mainly contained questions related to knowledge on provisions of section 4-7 of COTPA 2003, perception about smoking, chewing tobacco and practices with respect to compliance of selected provisions of the Act. 1414 samples were interviewed. RESULTS: The highest percentage of respondents was from the government departments. 70% of the illiterates consumed tobacco as compared to 34% post graduates. 52.1% of the respondents were aware of Indian tobacco control laws, while 80.8% had knowledge about the provision of the law prohibiting smoking in public places. However, 36.6% of the respondents reported that they had 'very often' ' seen tobacco products being sold 'to a minor', while 31.2% had seen tobacco products being sold 'by a minor'. In addition, 24.8% had 'very often' seen tobacco products being sold within a radius of 100 yards of educational institutions.