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

Patient Education and Multidrug-Resistant Tuberculosis in the United States

Culminating Experience ProjectKacy Hornor

San Francisco State University Department of Health Education

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

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

Drug Susceptible TB MDR-TB

6-9 months(oral meds only)

18-24 months (initial 6 mo. w/ daily injectable)

Medications less toxic, adverse reactions less common and less severe

Medications are more toxic, side effects common, some permanent

Estimated direct healthcare cost:$22,000-$28,000

Estimated direct healthcare cost: $113,100-$147,600

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

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

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

Findings

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

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

Psychosocial support• Peer support groups for MDR patients have

been effective in other parts of the world1

• Unique context of United States– Less patients = lack of peer support

• Importance of family support 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.

Stories and Images• http://youtu.be/jrg07UdyziM• Narratives and patient stories are more credible,

accessible1

• Stories can address patient concerns 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.

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

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?

Limitations

• Lack of existing literature– Interventions successful in other countries may

not be effective in US• Small interview sample– No patients– Few local providers

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

Questions?