Webinar Outline and Objectives

1. Providing Comprehensive Supportive Care to People with DR-TBLessons Learned from Pilot Implementation

2. Webinar Outline and Objectives • Review Comprehensive Supportive Care Package Framework • Describe the pilot objectives and methods • Describe implementation approaches and lessons learned in China and Pakistan • Answer questions from participants • Provide information on how to access the Care Package documents

3. Four Thematic Areas 13 comprehensive care elements Monitoring/treatment of side effects Patient nutritional support Monitoring/treatment of co-morbid conditions Physical rehabilitation Palliative & end-of-life care for people who cannot be cured Patient assessment & care plan Education/treatment literacy Treatment at location of choice Respectful, compassionate communication Monitoring/treatment of mental illness Address social isolation and need for emotional support Protection from stigma and discrimination Financial assistance

4. Pilot Project Objectives • Introduce a comprehensive package of ancillary support services for people with DR-TB and evaluate it in terms of feasibility, acceptability, patient satisfaction, patient outcomes, and cost. • Assess the package toolkit for its utility in evidence-based planning, implementation, and evaluation of patient-centered supportive services for DR-TB patients and refine it for scale-up. NAP Priority Countries

5. Methods employed to determine: • Satisfaction • Feasibility and acceptability • Clinical outcomes Assessing the DR-TB Care Package to Obtain Lessons Learned

6. Assessing the DR-TB Package • Patient satisfaction • Surveyed patient • Compared responses from a baseline or control cohort with the cohort receiving the care package • Asked about overall satisfaction, the interactions with their providers and their attitudes towards their care/treatment • Feasibility and acceptability • Surveyed healthcare providers and managers • Asked if care package implementation was feasible, acceptable, and sustainable

7. Assessing the DR-TB Package • Treatment outcomes • Does the care package lead to improved treatment outcomes? • Compared historical outcomes data with interim outcomes from the cohort receiving the care package • Measured by interim results • Higher proportion of patients still on treatment at 6 months • Lower proportion of deaths • Lower proportion of loss to follow-up • Higher treatment success as final outcome (determined post-pilot)

8. Country Presentations on Lessons Learned

9. Li Ling: Program Director, FHI-360 CAP-TB Project, China Country Presentation: China

10. DR-TB Care Package: lessons learned fromPilot CAP-TB China project August 26,2019

11. Site Selection and Operational Management Structure Criteria for Site Selection • Types of facility to deliver MDR-TBcareandtreatment • Leadership support&political commitment • # of MDR-TB cases/TB prevalence • Existingpatientreferralsystemandcoordinationmechanisms • Socio-economic profile • Resource integration with other MDR-TB programs

12. Patient-Centered Care Delivery Team NTP Officers (CDC) • Project planning, monitoring, and training • Coordination and troubleshooting for continuity of care TBPhysicians • MDR-TB clinical management • Monitoring and management of adverse drug effects and co-morbid physical conditions CommunityHealthCare Workers • Patientfollow-up • InjectionserviceforDR-TBpatients • Communitymobilization To deliver comprehensiveSupportiveCaretoDR-TBPatients Peereducators • Peereducation,counselling, and support Nurses • Patienteducation,counselling,andmy careplan • Clinicalnursing

13. Capacity Strengthening Through Training, Mentoring and Supervision MDR-TBClinicalManagementTraining LessonsLearned • TBphysiciansshouldbeprovidedwithanorientationabout thepatient-centered care • Greater involvementofphysicians in implementation of the patient care through: Nurse counsellors attending weekly clinical case review led by TB physicians MDR-TBClinicalCaseReviewWorkshop TAandTrainingforintroductionofSTR CapacityBuildingforPhysicians Online training on causality assessment for AEs E-mailcorrespondenceforsolvingsitequeries

14. Capacity Strengthening Through Training, Mentoring and Supervision Capacity Building for Nurse and Peer Counsellors LessonsLearned • Practical exercises, such as role play, are essential for counselling skills training • On-sitementoringby aseniorcounsellor will complement in-class trainings with one-on-oneexpertinstruction to make improvements in their own workplace settings.

15. EmpoweringPatientstoBecomeCareProviders 57 Zone is a peer-led online and in-person counselling platform for patient education led by current and former TB/MDR-TB patients and TB/HIV patients 4, 290 registered members for on-line platform LessonsLearned • Work with peersupportgroups as partners to deliver care • Provide ongoing training and support to allow peer educators to build their skills and capacity to deliver quality peer education and counselling

16. Develop Tools to Support the ImplementationofthePatient-centered Care ForCounsellors–Supportworkingeffectively ForPatients–Maximizetreatmentadherence Counselling Tool – Patient Treatment Decision Making Pathway

17. A data driven solution to quality improvement – MDR-TB Clinical Management Platform(CMP) • Integrates previously fragmented and isolated patient data • Strengthens efficient and timely DR-TB case management • Uptake of sputum tests • Follow-up visits • Appropriate MDR-TB regimen and dosage • Clinical evidence to motivate treatment adherence

18. Encouraging results: historical treatment success rates vs. interim pilot results Number of Patients Covered by the Pilot NAP Project Treatment outcomes for 232 patients for evaluation cohort ( as of April 2018 and July 2019)

19. National expansion of CAP-TB patient-centered care model • NCTB plans to scale up the CAP-TB patient-centered care model to all provinces within 2 years (2019-2020). (“lead sites” per one province) • March 2019, FHI 360 singed MOU with China CDC for national scale-up • As of July 2019, expand to 9 provinces and work with 26 local partners in China

20. Acknowledgements • USAID • Supportive Care Package Core Team (D’Arcy Richardson; Lisa V. Adams; Hilton Lam) • The Union ( Dr. Ignacio; Dr. Chen-Yuan) • China National Center for Tuberculosis Control and Prevention (NCTB) • CAP-TB partners in China • MDR-TB support group ( 57 Zone, Baidu E-forum)

21. Abdul Ghafoor: National Technical Advisor for MDR-TB, Pakistan Country Presentation: Pakistan

22. “Comprehensive Care for DR-TB Patients” Pakistan National TB Control Program Pakistan

23. Objectives of Pilot Study Based on thematic areas identified and proposed by USAID, NTP Pakistan designed a pilot project to support people with MDR-TB beyond the current standard package: • To study the factors affecting adherence to treatment • To study the effects of interventions under the Comprehensive Supportive Care Package approach on adherence and treatment outcomes

24. Pilot PMDT Site • Lady Reading Hospital, Peshawar • Samli Sanatorium, Murree

25. PILOT PROJECT DESIGN Project Strategies Patients satisfaction survey – pre & post Enhanced incentives for patients & supporters Improved psychological assessment tool Nutritional support for patients Capacity building of Psychologists Awareness for patients and supporters Home visits for contact screening and patient retrieval NTP/PTP support and supervision Project Inputs Human Resources Development of Modules & Audio Visuals Capacity building of staff Cash Incentives (Family Support + Travels) Nutritional Supplements Procurement ( Hardware, stationery, Ensure) M&E/Supervision Program Administration

26. Major Activities • Standardized psychological assessment and provision of psychological support • Provision of health education to patients and families • Distribution and use of appropriate health education materials • Provision of food supplements to patient • Provision of family support to patient • Provision of travel expenses to patient and treatment supporter • Provision of cost for ancillary drugs/ tests • Monitoring adverse effects of drugs including cardiac effects • Establishing the linkages between PMDT sites and the target districts • Follow-up of patients in community to ensure adherence and infection control measures

27. Major Activities • Standardized psychological assessment and provision of psychological support • Provision of health education to patients and families • Distribution and use of appropriate health education materials • Provision of food supplements to patient • Provision of family support to patient • Provision of travel expenses to patient and treatment supporter • Provision of cost for ancillary drugs/ tests • Monitoring adverse effects of drugs including cardiac effects • Establishing the linkages between PMDT sites and the target districts • Follow-up of patients in community to ensure adherence and infection control measures

28. Change in depression and anxiety over time in evaluation cohort

29. Patients’ current attitude towards their DR-TB treatment

30. Patient assessment of provider interactions Q1. Providers make me feel at ease (are warm, friendly) Q2. Providers treat me with respect Q3. Providers listen to me

31. Overall patient satisfaction

32. Treatment Outcomes • Final results for historical cohort versus interim results for evaluation cohort • Higher proportion still on treatment – expect higher TSR • Much lower death rate • No person lost to follow up

33. Impact of Pilot Project • Adherence • 95% patients of evaluation cohort visited their respective PMDT sites on monthly basis regularly and were eager to complete their treatment. • Psychological State • Providing psychological assessment and counselling had a significant impact on patients’ psychological well-being, overall mental health, and ability to cope with their DR-TB diagnosis and treatment. • Wellbeing • In addition to the immediate benefits to patients, financial support helped DR-TB patients overcome their financial crises. Travel incentives to DR-TB patients also contributed to better adherence and positive attitude towards their treatment. • Weight Gain • With monthly nutritional supplements, around 54% of the patients have documented weight gain.

34. Key challenges

35. Lessons Learned • Psychosocial support plays a pivotal role in improving treatment adherence and better treatment outcomes • Capacity building of MDR Physicians, Psychologists help in better patient management particularly in the area of counselling and psychological advice • Psychosocial support developed satisfaction in patients as evidenced by patients’ satisfaction survey • Incentivizing travels leads to regular visits to the PMDT Sites • Better nutrition results in better outcomes

36. Lessons Learned Cont.… • Structured counselling and support lead better adherence, trust in the health services as evidenced by 0.0% lost to follow-up among the study group • Regular interaction with and motivation of patients helps engage them as ambassadors for DR-TB services • Close coordination with the community plays an important role in addressing stigma and advocacy • TB control programs should include psychosocial support (structured counselling, travel incentives, family support in their proposals)

37. What Next ?? USE OF PROJECT RESULTS Evidence dissemination Advocacy at highest level for political buy in Adaptation/use of material developed through pilot- Awareness Video, Physiological assessment tools FUTURE PLANNING Domestic funding through social protection initiative ( Health card scheme) Explore local philanthropy through Stop-TB and other activist organizations Technical assistance from International partners for advocacy & resource generation Revision of NSP 2020 & inclusion of lessons learnt from comprehensive package for MDR-TB

38. Thanks to the Comprehensive Supportive Care Package Team! • Alex Golubkov, Senior Technical Advisor, USAID agolubkov@usaid.gov • D’Arcy Richardson, RN, PHN, CNS, MS, Lead Consultant darcy4health@gmail.com • Lisa V. Adams, Associate Dean for Global Health, Dartmouth’s Geisel School of Medicine lisa.v.adams17@gmail.com • Hilton Lam, Professorial Chair in Health Economics and Policy, University of the Philippines; Director, Institute of Health Policy and Development Studies, National Institutes of Health, University of the Philippines, Manila hiltonyulam@gmail.com • Carolyn Rhodebeck and Nuha Naqvi, MDR-TB Interns, USAID • Pilot implementing partners and National TB Programs: • China: FHI360/CAP-TB • Pakistan: Stop TB Partnership • South Africa: URC/TB CARE II • Ukraine: PATH/Challenge TB

39. Q & A