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Patient Education and Multidrug-Resistant Tuberculosis in the United States

Patient Education and Multidrug-Resistant Tuberculosis in the United States. Culminating Experience Project Kacy Hornor San Francisco State University Department of Health Education. Tuberculosis.

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Patient Education and Multidrug-Resistant Tuberculosis in the United States

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  1. Patient Education and Multidrug-Resistant Tuberculosis in the United States Culminating Experience Project Kacy Hornor San Francisco State University Department of Health Education

  2. Tuberculosis • Tuberculosis (TB) is caused by bacteria (Mycobacterium tuberculosis) that most often affect the lungs • TB is curable and preventable • TB is spread from person to person through the air • In 2011, 8.7 million people became sick with TB and 1.4 million died from TB1 1 World Health Organization (2013). Tuberculosis Fact Sheet. http://www.who.int/mediacentre/factsheets/fs104/en/index.html

  3. Multidrug Resistant Tuberculosis • What is multidrug-resistant tuberculosis (MDR-TB)? • TB bacteria resistant to at least isoniazid and rifampin, the two most powerful, standard anti-TB drugs • What causes drug resistance? • Inappropriate or incorrect use of anti-TB drugs, or use of poor quality medicines • How do people get MDR-TB? • Primary infection vs. acquired disease

  4. MDR-TB in the United States • 124 cases in 2011 • CA, TX, NY report ~half of cases annually • Dramatic shift since the 1990s from US-born to foreign born cases • Diverse patient population • Variety of beliefs about health, healthcare system • English is not preferred language for many patients • Reading levels vary

  5. Purpose • Understand effective strategies for educating and supporting MDR patients through treatment • Understand what tools and resources are needed by MDR patients and providers in the US • Provide recommendations for the development of patient education tools and resources • Begin to develop tools based on findings and recommendations

  6. Methods • Lit Review (Sept – Dec 2012) • 19 articles • Studies originating from the US, South Africa, France, Peru, and Turkey • Semi-structured Interviews (Mar – Apr 2013) • 7 participants: • 4 CDPH TB Control Branch MDR-TB Service • 1 Francis J. Curry International Tuberculosis Center • 2 Local Health Department PHN Case Managers (Orange and San Mateo Counties) • Analysis

  7. Findings

  8. Patient-Provider Relationship "More important... than anything else, is developing a relationship with the patient that is built on respect… You have to find a way to address the person in such a way in that they understand that you respect them as a person and that you want to help them as a person. That to me is the most critical in terms of adherence.” Gisela Schecter, CA MDR-TB Service

  9. Patient-Provider Relationship • Two year relationship, daily contact • Many challenges and barriers to adherence • How have providers strengthened this relationship? • Giving patient appropriate opportunities to make decisions about their treatment • Celebrating small milestones along the way

  10. Psychosocial support • Peer support groups for MDR patients have been effective in other parts of the world1 • Uniquecontext of United States • Lesspatients = lack of peersupport • Importanceof familysupport and education, addressing stigma 1 Acha, J., Sweetland, A., Guerra, D., Chalco, K., Castillo, H., & Palacios, E. (2007). Psychosocial support groups for patients with multidrug-resistant tuberculosis: five years of experience. Global public health, 2(4), 404–417.

  11. Stories and Images • http://youtu.be/jrg07UdyziM • Narratives and patientstoriesaremorecredible, accessible1 • Storiescanaddresspatientconcerns of depression, anger, stigma, and isolation2 • Illustrated handouts facilitate comprehension, support adherence and appointment-keeping • Visual tools can be tailored to specific cultures, languages 1 Cabrera, D. M., Morisky, D. E., & Chin, S. (2002). Development of a tuberculosis education booklet for Latino immigrant patients. Patient Education and Counseling, 46(2), 117–124. 2 Dick, J., Van der Walt, H., Hoogendoorn, L., & Tobias, B. (1996). Development of a health education booklet to enhance adherence to tuberculosis treatment. Tubercle and Lung Disease, 77(2), 173–177.

  12. Support for Providers • MDR-TB is rare in many local health departments in CA • Providers new to managing the disease • Lack of tools to help providers communicate with MDR-TB patients, explain medications and side effects in simple language • Ex: nurse case manager making her own drug handouts

  13. Recommendations • Patient-friendly drug handouts (in progress!) • Photo-novel, blog, or video to share patient stories • Supportive resources for providers • Tracking tools for patients to monitor their own treatment • Support groups?

  14. Limitations • Lack of existing literature • Interventions successful in other countries may not be effective in US • Small interview sample • No patients • Few local providers

  15. Acknowledgments Lisa True, Gisela Schecter, Gayle Schack, Neha Shah, Leslie Henry, Ann Raftery, Bertha Hernandez, and Sonia Baldassarre Mickey Eliason and Juliana Van Olphen Cohort 2013, SFSU Professors and Staff MDR-TB patients and providers around the world

  16. Questions?

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