1. Access to health care for TB patients: Mapping patients’ costs by Verena Mauch

2. What are important issues in access to health care for TB patients? TB affects especially the poor. Economically and socially disadvantaged groups face barriers when seeking treatment. TB can stand at the beginning of a spiral into (deeper) poverty. By addressing barriers and reasons for delay to timely diagnosis and treatment by NTPs, costs to TB patients can be reduced. The Tool To Estimate Patients’ Costs can assist TB programs in identifying these barriers.

3. What are the types of costs that TB patients face? Charges for health services Lost income, productivity, time Transport, accommodation, subsistence

4. What is The Tool to Estimate Patients’ Costs? A generic questionnaire to be adapted to local circumstances, accompanied by guidelines and work-aids: literature review socioeconomic indicators guide list of indicators to be measured with the Tool guidelines on adaptation of questionnaire, methods sampling, interpretation of results, possible interventions template for data entry, summary calculation sheet, example presentation of results

5. Example page of generic questionnaire

6. What are the aims of the Tool? 1.Assess the impact of TB on the welfare of households and individuals. 2. Establish an evidence base for interventions that can  contribute to poverty reduction  increase equity in access to care  increase case detection  contribute to improved treatment adherence

7. How does it work? The questionnaire helps to collect information on: Direct (out of pocket) and indirect (opportunity) costs of TB patients before/during diagnosis & during treatment Costs of a patient’s supporter (guardian) Health-care seeking behavior patterns incl private sector Patient & health system delays Changes in patient’s productivity due to TB Additional costs due to other chronic illnesses (HIV) …

8. How does it work? Coping costs – sale of assets, taking up debt – saving on food and other items – taking a child out of school to care for the patient Health insurance Gender issues and social costs of TB Socioeconomic information Personal and household income Asset index and food consumption as proxies for income

9. Example: Tool Pilot in Kenya By Kenya NTP (DLTLD) and KNCV In two districts in Eastern Province (population ~760.700) 208 TB patients >15 years interviewed in 9 facilities Questionnaire adapted and translated into Kiswahili and back into English to ensure cross-validity One interview lasted on average 30-45 minutes Time Preparation, protocol development, ethics approval: July – August 2008 Interviews and data entry: September 2008 Data analysis and report writing: October 2008

10. Direct cost: 1.592 KSH (median 860) = US$21(10) Time spent: 24 hours (median 12) Number of visits: 3,4 (median 3) Patient Delay: 1,5 – 2,9 months Tool pilot in Kenya - Results Example 1 Patients’ costs before and during diagnosisPatients’costs before and during diagnosis by NTP

11. Results Example 2 Total direct and indirect costs as proportion of personal income Direct costs = out of pocket costs Indirect costs = opportunity costs

12. Results Example 3 Changes in income of households and individuals due to TB

13. Feasibility of implementing the Tool Can be done by Master-level students (Kenya, Myanmar), NTPs (Viet Nam), NGOs (Dom Rep) Background in social sciences helpful, but not required Data analysis: simple descriptive stats & crosstabs Software required: Word, Statistics Program Time required: 3-4 months with one full-time staff Costs: depending on local prices and seniority of staff US$10.000 – 35.000.

14. Limitations of the Tool Only those are captured who reached a health facility which provides DOTS. Bias towards those who can afford health care. Depending on place of the interview, automatically a certain group of patients is excluded Results heavily dependent on area/district where patients are interviewed. Recall and response bias. Unreliability of income data.

15. Impact of the pilot Evaluated through follow up interviews with key staff and stakeholders six months after the pilot. In the pilot districts: Decentralization of treatment services Nutritional support for TB patients Sputum sample transport to diagnostic centres On national level: TB & poverty/gender working group

16. Where is the Tool available ? Currently implemented in Ghana, Dominican Republic and Viet Nam. Available on websites (free access): TB & Poverty Working Group www.stoptb.org/tbandpoverty TB Coalition for Technical Assistance www.tbcta.org Or contact KNCV TB Foundation www.kncvtbc.nl

17. Thank you!

18. Acknowledgements Tuberculosis Coalition for Technical Assistance TBCTA Tuberculosis Control Assistance Program TBCAP United States Agency for International Development USAID WHO Stop TB Department Japan Anti-Tuberculosis Association JATA Kenya Ministry of Public Health and Sanitation: Division of Leprosy, Tuberculosis and Lung Disease DLTLD Naomi Woods, Merlin, Goma, DR Congo Beatrice Kirubi, KEMRI Centre for Public Health Research, Nairobi, Kenya Members of the TB & Poverty Working Group