Orientation to the Comprehensive Supportive Care Package for

Orientation to the Comprehensive Supportive Care Package for

Orientation to the Comprehensive Supportive Care Package for People with DR-TB Webinar objectives After attending this webinar, participants will: 1. Be able to explain the context and rationale for the DR-TB comprehensive supportive care package 2. Understand the framework for delivering the care package, including the 4 thematic areas and 13 elements of comprehensive supportive care 3. Be familiar with overall results of implementation in four pilot countries 4. Know where to find additional support for implementation 5. Have information on the topics that will be covered in the remaining webinar series Context and Rationale for the Comprehensive Supportive Care Package What is the global treatment success rate for MDR/RR-TB? 43%55%70%80%

The current state of DR-TB Estimated 3.5% of new and 18% of previously treated cases had RR/MDR-TB in 2017 India (24%), China (13%) and Russian Federation (10%) account for almost half of the burden China and India account for 39% of global gap between treatment enrollment and incidence of RR/MDR-TB Estimated 558,000 cases of drug-resistant TB (DR-TB) including 457,000 multi-drug resistant (MDR) and 39,000 extremely drug-resistant (XDR) cases emerged in 2017. 160,684 DR-TB cases were diagnosed and notified (~29%) 139,114 DR-TB patients enrolled on treatment (~87%) The latest treatment outcome data show treatment success rates of 55% for MDR/RR-TB and 34% for extensively drug-resistant TB (XDR-TB) (2015 cohort). 5 National Action Plan for Combating MDR-TB 6 National Action Plan for Combating MDR-TB Objective 2.2 Prevent MDR-TB transmission

Objective 2.2.2 - Enhance adherence to TB and MDR-TB treatment. Y1 milestone: USAID will develop generic ancillary care packages (e.g., services and/or supplies not directly related to treatment, but that enable patients to continue therapy , such as pain or nausea medicine, food rations, supportive services) for MDR-TB patients. Y3 milestone: USAID will work with up to 10 countries to implement ancillary care packages to improve MDR-TB patient outcomes 7 Why do we need a package of supportive care? To address the increasing numbers of DR-TB patients and unacceptably low global DR-TB treatment success rate To help patients with the many challenges of treatment, both medical and non-medical To clearly define what patient-centered means To standardize an approach to implementing supportive interventions that reduce costs and improve cure Because we owe it to patients to use best practices and

adhere to ethical standards for healthcare 8 What are we aiming to achieve with a comprehensive supportive care package for people with DR-TB? Improve access to TB treatment support Improve treatment outcomes Prevent suffering and death and reduce transmission Quality care for people with DR-TB DR-TB prevention through adequate treatment of DS-TB DR-TB prevention through infection control and contact evaluation and treatment Quality rapid diagnostics Trained clinicians and health workers Free, high-quality drugs with new and shortened regimens active TB drug-safety monitoring and management (aDSM) and prompt treatment of side effects

Supportive care until cure Ongoing monitoring following cure 10 The Comprehensive Supportive Care Package Framework Defining comprehensive elements of DR-TB care Sources Patients Providers Implementers NTPs Donors Literature Global guidance Approaches Online survey Interviews Group discussions

Literature review 12 Survey results: patient respondents Top 5 things that were most helpful to complete treatment: 1. Personal motivation to get better 2. My desire to get better to take care of my family 3. The support of my family to get better 4. The caring attitude of my health providers 5. Support from other DR-TB patients Top 5 barriers to completing treatment: 1. The treatment was very long 2. The medicine made me feel sick

3. The injections were painful 4. I needed to work to support my family 5. I felt very alone 13 Top recommendations to NTPs from patients 1. Give me and my family education on DR-TB, treatment and protecting family members from getting sick 2. Counsel me and my family to reduce fear and stigma 3. Make financial support/social insurance available to reduce the burden on my family 4. Create peer support groups to help me deal with isolation 5. Involve me in decision-making about my care (patient autonomy and choice) 6. Treat me with respect 14 The DR-TB Care Package framework 1. Is aligned with international recommendations. 2. Is based on needs articulated by people with DR-TB but

is relevant to all people treated for TB. 3. Does not replace existing supportive care activities but helps organize them in a systematic way. 4. Identifies gaps in supportive care and helps programs plan to fill them. 5. Provides a high degree of flexibility that is responsive to a wide variety of local conditions and priorities. 15 Four Thematic Areas, Thirteen Comprehensive Care Elements Respect patient autonomy and support selfefficacy Maximize physical comfort, safety, and wellness 4. Monitoring/treatment of side effects 1. Patient assessment & care plan 5. Patient nutritional support 2. Education/treatment literacy

6. Monitoring/treatment of co-morbid conditions 3. Treatment at location of choice 7. Physical rehabilitation 8. Palliative & end-of-life care for people who cannot be cured Provide psycho-emotional support and protection from social isolation or discrimination 9. Respectful, compassionate communication 10. Monitoring/treatment of mental illness 11. Address social isolation and need for emotional support 12. Protection from stigma and discrimination

Prevent catastrophic costs to patient and family 13. Direct or indirect financial support Operationalizing the Package Global level Agreement on four key thematic areas for comprehensive supportive care for DR-TB and the elements of supportive care for each area National or regional level Assess the current status of patient support; decide what interventions are

feasible for the program to implement to cover each element for each thematic area and create an appropriate package of supportive services Local or facility level Adapt the national package to local circumstances; develop a local implementation plan with clear roles and responsibilities for delivering services

Individual patient level Assess patient for needs in each thematic area and work in partnership with the patient to develop an individual care plan incorporating the available services that best meet that person's specific needs and preferences 17 Care Package guidance document Part 1: Delivering Comprehensive Supportive Care to People with Drug-resistant Tuberculosis (Practical Guide) Part 2: Operational Toolkit

Step-by-step instructions How-To guides for each element of supportive care Service Status Assessment and Planning template Rapid Systems Assessment tool Local Operational Plan template Patient Assessment and Individual Care Plan template M&E Guide http://ghpro.dexisonline.com/resource/delivering-comprehensive-supportivecare-people-drug-resistant-tuberculosis-0 18 Implementing Comprehensive Supportive Care for People with DR-TB

Pilot Project Objectives Introduce a comprehensive package of ancillary support services for people with DR-TB 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 DRTB patients, and refine it for scale-up NAP Priority Countries 20 Operationalizing in-country Thematic Area Elements 1. Respect for patient autonomy and support of self-efficacy strengthened

Physical comfort, safety, and wellness among DR-TB patients maximized 2. 3. 4. & 6. Monitoring and treatment of adverse drug effects and comorbid physical conditions 5. Nutritional support 7. & 8. Physical rehabilitation & end-of 8. 9. Psycho-emotional support and protection 10. from social isolation or discrimination 11. strengthened

12. 13. Prevention of catastrophic costs to patient and family strengthened Patient intake assessment and individual care plan Patient and family education on treatment Support treatment and care accessible to patients -life care not yet implemented Palliative care Patient-centered counselling throughout care Monitoring and treatment of mental health conditions Support for reducing social isolation

Protect patient and family from stigma and discrimination Patient cost saving or reduction activities Intervention Activities Use My Assessment and Care Plan throughout treatment Treatment education and counselling for patients and their family members throughout treatment Phone helpline for MDR-TB patients Follow up discharged patients through the MDR-TB Clinical Management Platform (CMP) Transportation allowance for patients who pay follow-up visits to the clinic Monitoring and management of adverse drug effects and co-morbid physical conditions MDR-TB clinical management through CMP Assessment and monitoring of patient nutrition Free breakfast for nutrition improvement Palliative care and counselling for the patients who fail their MDR-TB treatment Peer education and support (one-on-one and online)

Assessment for depression and monitoring of mental health conditions among MDR-TB patients Assessment and monitoring of social support received by patients Legal consultation hotline for MDR-TB patients provided by public lawyer (for all sites) Financial literacy education and support to prevent catastrophic costs and maximize benefits from medical insurances schemes Emergency Fund for poor patients 21 Encouraging results: historical treatment success rates vs. interim pilot results China Cohort / Outcome Historical 2015 (N=381)

Treatment success 42% Still on treatment South Africa Pilot (N=232) Historical 2014 (N=704) Pilot (N= 225) Historical 2014

(N=785) 53% 42% 48% 88% Pakistan Ukraine 23% Pilot (N=254) Historical 2014 (N=293)

Pilot (N=100) 74% 95% 83% Treatment failure 30% 3% 5% 4% 18%

8% 2% 2% Died 3% 1% 24% 13% 19% 5% 19%

3% 16% 10% (+8% transfer) 13% 4% 3% 0% LTFU 15% 8%

Incremental costs of care package implementation Country Total patients served China Pakistan S. Africa Ukraine ~434 100 225 382 Cost per patient per month

$42 $137 $64 $39 Included in the cost All supportive services, additional HR needed All supportive services All supportive services, CBO costs All supportive services, CBO costs, plus LTFU tracing, advocacy activities for local funding Secondary Benefits of Package Implementation Stronger health systems Clear roles & responsibilities for patient care Stronger links between providers inside & outside of facilities Better use of data for immediate quality improvement Better understanding of patient-centered care More confidence among participating providers

that they can handle the needs of their patients 24 Thanks to the Comprehensive Supportive Care Package Team! Alex Golubkov, Senior Technical Advisor, USAID [email protected] DArcy Richardson, RN, PHN, CNS, MS, Lead Consultant [email protected] Lisa V. Adams, Associate Dean for Global Health, Dartmouths Geisel School of Medicine [email protected] 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 [email protected] Nuha Naqvi and Carolyn Rhodebeck, USAID Global Health Bureau Interns Pilot implementing partners and National TB Programs: China: FHI 360/CAP-TB Pakistan: Stop TB Partnership South Africa: URC/TB CARE II Ukraine: PATH/Challenge TB 25

Thank you for joining! Questions? Q: How does the Care Package differ from the DR-TB support we are already providing to patients, like food packages and transportation reimbursements? A: The NTP of your country may already have some activities related to support for DR-TB patients, such as food packages or transportation reimbursements. The Care Package does not replace those activitiesit is a way to organize that support into a comprehensive framework that can help identify gaps in coverage. It is flexible in how support can be provided, and is based on patient needs. Q: Why do you believe the Care Package will have better treatment outcomes for DR-TB patients? Do we have any evidence or data to support the statement? A: The pilot implementation in 4 countries will demonstrate if the Care Package results in better adherence to treatment and therefore better treatment outcomes. Results will be available in early September 2018. At present, the evidence is encouraging. 31

Q: How flexible is the implementation of all suggested 13 elements of the Package? Do we need to implement them all? A: The package is meant to be flexible, and should be adapted to the local situation. Implementation should be based on patient needs first, combined with what is feasible to implement in a given situation. Not all elements will be needed or wanted by every person, and all programs may not have the resources or expertise to implement all elements yet. The goal is to work toward covering as many areas of need as possible starting with the highest priorities for your setting. Highest priority elements are those that provide patients with the greatest benefits to support them through to cure. Each country and even each region in a country may have different priorities that can only be determined through talking with patients about their needs. Q: Can a country use the proposed Care Package Guide and tools and adapt to the local settings, or must the entire Guide be used as is? A: The implementation process was designed to be adaptedthere is a high degree of flexibility. Each country should adapt the proposed DR-TB Care Package and tools to local settings and select needed elements for implementation, based on patient needs, support already provided, etc. TA partners can assist the NTP with adaptations as needed. If a country already has a process and tools in place, there is no need to replace themthese are made available to help with implementation in places where there is not a

system in place already. 32 Q: Can countries not involved in the National Action Plan have access to the Care Package? Where can we find technical assistance for implementation? A: While the Care Package was developed under the National Action Plan and its initial implementation is focused on the 10 NAP countries, all countries globally are more than welcome to implement the concepts proposed in the Care Package. The practical guide/operational toolkit will be available in October 2018 and presented at the Union TB Conference. It will then be available via download for everyone. Should technical assistance be needed to help with implementation of the Care Package, please communicate with your local USAID-funded project incountry or directly with USAID TB team in Washington to identify potential TA providers for implementation. 33

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