TB Patient-Assisted contact Identification & Referral A novel strategy to add to the TB contact investigation toolbox My name is Kristiana Dhillon and I am a tuberculosis outbreak epidemiologist at the state TB Control Branch. Today I’d like to share with you a novel contact investigation strategy that can be used to when other methods in your CI toolbox aren’t effective. California TB Controllers Association March 12, 2019 Kristiana Dhillon, MS Epidemiologist, Outbreak Prevention & Control Section TB Control Branch, California Department of Public Health

Identify common challenges to locating and evaluating contacts of TB patients Describe how to implement a novel referral strategy to improve contact investigations Identify TB patients for participation in a contact referral strategy Learning Objectives

Disclosures and Disclaimers None to declare

Background First, some background.

Traditional Methods to Identify and Locate Contacts to TB Patients Public health workers regularly visit the named contacts of each TB case and keep a contact roster Health department attempts to locate named and other suspected contacts for TB screening and evaluation When it comes to identifying and locating contacts of TB patients, traditional methods tend to be either active or passive; active being when public health workers regularly visit the family and named contacts of each TB patient and keep a contact register. The health department then attempts to locate named and other suspected contacts for TB screening and evaluation. Passive methods, which may be implemented more often in resource-limited areas, include the provision of health education to a TB patient, who is then directed to present any known contact with suspected symptoms for TB screening and evaluation.

Identifying & Locating TB Contacts: Challenges TB patients may be unwilling and/or unable to disclose contact names Contacts may be hard to reach or become lost to follow-up Identifying & Locating TB Contacts: Challenges That said, many health departments and medical facilities face challenges when implementing the traditional methods. For example, TB patients may be unwilling to elicit or disclose contact names—these include TB patients from communities afraid or suspicious of government institutions, such as: Undocumented immigrant communities Indigenous communities Communities with drug use And Gangs TB patients may be unable to elicit or disclose contact names because they cannot provide sufficient contact identifying or locating information This could include: Patients who are medically or psychologically unable to provide information or Patients experiencing homelessness And finally, contacts of TB patients are difficult to reach, or become lost to follow-up due to: Inaccurate locating information Suspicion toward government institutions Residing in rural or hard to reach areas

TB Cluster in Persons Experiencing Homelessness Sonoma County Investigation Context Clinical Characteristics Two-person cluster of drug- susceptible tuberculosis (diagnosed in 2018) Adult, U.S.-born men with histories of homelessness and incarceration Both patients diagnosed with pulmonary TB; same rare TB genotype Both patients: sputum smear and culture positive, cavitary Patient 1: cavitation on CT during ER visit in 2015; diagnostic CXR 5/2018 Patient 2: diagnostic CXR 7/2018 One local California investigation which highlighted many of these challenges, and in turn prompted the development of a new contact identification and locating strategy, took place right here in Sonoma County. This investigation featured a two-person cluster of drug-susceptible tuberculosis (TB) diagnosed in 2018; both were adult, U.S.-born men with histories of homelessness and incarceration; both patients were diagnosed with pulmonary TB; and both had the same rare TB genotype Both patients: sputum smear and culture positive, cavitary Patient 1: cavitation on CT during ER visit in 2015; diagnostic CXR 5/2018 Patient 2: diagnostic CXR 7/2018

TB Cluster in Persons Experiencing Homelessness Sonoma County Contact Investigation Barriers Both patients: experienced homelessness; used methamphetamines Patient 1: affiliated with a gang, fear of retaliation Patient 2: named many contacts, difficulty recalling legal names or locating information Part of what hindered the contact investigations were barriers faced by the TB patients themselves: Both TB patients, and many of their contacts, were experiencing homelessness and using meth, which made it difficult for them to engage and be retained in care. One patient (Patient 1) had a gang affiliation and refused to disclose contact names due to fear of retaliation The other patient (Patient 2) named dozens of contacts but had difficulty recalling legal names or locating information.

Strategy After having already put in a considerable amount of work into the contact investigations for these cases, the Sonoma County health department ultimately reached out to the state for additional support. Part of my role at the state includes, in additional to epidemiological work, providing on the ground support for CI’s and outbreak investigations. This includes contact identification and follow-up, as well as performing re-interviews of TB cases. So after conducting re-interviews for both Sonoma patients, and hearing their respective concerns and challenges when it came to naming contacts, I came up with an idea.

Accessing Vulnerable & Hidden Populations Public Health Research Transfemales Empowered to Advance Community Health (TEACH) Study 2010 study by San Francisco Department of Public Health on local transgender women Selected 11 transfemales to function as recruiter “seeds”; incentivized to recruit others from their community TB Patient-Assisted Contact Tracing: case-control study in Nigeria A targeted health education intervention that trained TB patients to educate and refer their contacts for screening Patients trained: 65% of contacts presented for screening Control group (no training): 5% of contacts presented for screening Hearing from the TB patients about difficulties they had when it came to connecting themselves and their contacts to TB care made me think of the stigma experienced by HIV patients from vulnerable and hidden populations, and the resulting difficulties HIV researchers face when it comes to recruiting and studying HIV patients from these demographics. This reminded me of a 2010 study conducted by my old colleagues at the San Francisco Health Department for which they used incentives to recruit transgender women from the local transgender community, an extremely vulnerable and often times hard to reach population. The study, called “Transfemales Empowered to Advance Community Health”—or “TEACH”—employed a research sampling method called respondent driven sampling, which incentivizes individuals from the sample demographic, or “seeds,” to recruit other individuals within their network to participate in the study. TEACH elected 11 transfemales to function as recruiter “seeds” who were given 3 to 5 study recruitment coupons to hand to potential recruits. Every “seed” was given an initial incentive for participating, and received additional incentives every time someone they recruited presented with a coupon and enrolled and participated in the study. Those participants who completed the study would in turn receive an incentive as well. While the coupon return rate was 36.8%; a total of 319 individuals presented for the study with a recruitment coupon, 318 were screened for study participation eligibility (99.6%), and 303 (95.3%) were eligible. After recalling this, I wondered, could we use a similar approach to find and evaluate TB contacts from hard to reach populations? And was this already happening in the TB world? So I did some research and found one study from Nigeria that trained TB patients to educate and refer their contacts for screening. At baseline, 80% of the TB patients in the study and control groups had never brought any contacts for screening. After implementation of the TB education component, the number of patients in the study group that brought two or more contacts for screening rose to the significant level of 64.8% against 5.2% in the controls.

The Idea Combine targeted TB patient health education with incentivized patient-driven contact referral to connect hard to reach populations with TB evaluation and care Empower TB patients to educate and refer their own contacts So I thought, what if we could empower TB patients to educate and refer their own contacts? And that maybe, by combining targeted TB patient health education with incentivized patient-driven contact referrals, we could more effectively connect hard to reach populations with TB evaluation and care.

Process I pitched the idea to Sonoma County and we decided to go ahead and give it a try. Drawing from the respondent-driven sampling method and incorporating an education component, I began to develop a process for a patient-assisted contact referral strategy that we could use not only with the current cluster of TB patients, but for future investigations as well.

Target Population TB Patient Characteristics TB Patient Eligibility Vulnerable or hard to reach populations Unable to provide sufficient identifying or locating information for contacts Afraid or suspicious of government institutions Contacts who are lost to follow-up TB patients who decline to name contacts, or are not able to name contacts At least one re-interview has been conducted TB patient is willing and able to participate Patient’s contact investigation high priority due to transmission risk Firstly, the TB patient populations targeted for inclusion in this strategy would include one or more of the following characteristics: TB patients in vulnerable or hard to reach populations, e.g. gang members or those in danger of retaliation for naming contacts TB patients unable to provide sufficient identifying or locating information for contacts, e.g. persons experiencing homelessness TB patients from communities afraid or suspicious of government institutions TB patients with contacts who are lost to follow-up TB patients under consideration for participation in this strategy must meet the following eligibility requirements: TB patients who decline, or are unable to name contacts At least one re-interview has been conducted aimed at obtaining contacts’ names and locating information Re-interview should include patient education, assurance of confidentiality, and problem solving TB patient is willing, and has been determined to be medically and psychologically capable to participate Patient’s contact investigation high priority due to transmission risk

Staffing & Resources Personnel and partners may include: Resources provided by the health department: Local health department staff Clinic staff TB patients State health department staff TB patient education materials Contact referral cards Incentives and enablers Personnel and partners that could be part of the include: Local health department staff: TB program manager, epidemiologist, public health nurse, CDI/Outreach Worker Clinic staff: clinic director, patient coordinators, clinic physician and/or nursing staff TB patients State health department staff: communicable disease manager, epidemiologist Resources provided by the health department: TB patient education materials Contact referral cards Incentives and enablers

Preparation Sonoma County Patients Participating Clinics Individual strategies and priorities set for both TB patients Patient 1 to reach out to high priority contacts and those lost to follow-up Patient 2 to reach out to anyone he spent time with during his IP Referral cards designed and incentive values established One clinic identified and consented to participation Patients Individual strategies and priorities set for both TB patients (based on information from their re-interviews and personal circumstances) Patient A to reach out to anyone he spent time with during his IP Patient B to reach out to high priority contacts and those lost to follow-up Participating clinics Referral cards designed and incentive values established One clinic identified and consented to participation Instructed on: TB contact referral process, what to include in the TB evaluation, and how to report the information to the local health department Provided flowchart of TB contact referral and screening process, and example of a TB contact referral card

http://globaltb.njms.rutgers.edu/downloads/products/flipbook.pdf

http://globaltb.njms.rutgers.edu/downloads/products/flipbook.pdf

TB Contact Referral Card - Front

TB Contact Referral Card - Back

Findings

Initial Results Patient 1 Patient 2 Provided education; given 3 referral cards and instructions to approach any contact from his infectious period (IP) One contact presented to health department for screening, determined to not have been a contact during patient’s IP Provided education; given 5 referral cards and instructions to approach certain high priority contacts Enthusiastic about participation Reportedly lost his cards; unstably housed at the time

Limitations & Lessons Learned Patient A felt sick during his education session Patient A did not want to see nor interact with people from his IP Patient B was unstably housed and dealing with multiple life stressors Assess TB patients for their ability to take on strategy responsibilities Provide multiple education sessions Prioritize highly infectious TB patients for strategy Limitations Patient A felt sick during his education session; unclear how much information he retained Patient A did not want to see nor interact with people from his IP Patient B was unstably housed and dealing with multiple personal stressors; often forgot verbal instructions and appointments Lessons Learned Assess TB patients for their ability to take on responsibilities associated with the strategy Provide multiple education sessions to ensure comprehension Prioritize highly infectious TB patients over TB patients with lower infectiousness when considering implementation of the strategy

Conclusions Needs a comprehensive patient eligibility screening tool Strategy has potential to be a useful alternative CI option Future success relies upon: Strong planning Close patient support and engagement

Acknowledgements A big thank you to: Sonoma County Health Department CDPH TBCB: Anne Cass, Tambi Shaw, Martin Cilnis Russian River Health Center San Francisco Department of Public Health

Extra Slides

Roles & Responsibilities Local Health Department Provide training on TB basics Identify contacts Provide referral cards Provide incentives to TB patient Provide training on TB basics for the TB patient, including: disease transmission and symptoms, LTBI vs. TB disease, risk factors, the importance of timely evaluation and treatment, and how to communicate this information to contacts Identify contacts with whom the TB patient associated during their infectious period. Note: TB patients are not required to explicitly name contacts Provide referral cards to the patient, which feature basic TB information, TB clinic referral instructions, a unique patient ID (PID) number assigned to the TB patient, and a card number; TB patients are instructed to reach out to educate and refer their previously identified contacts Provide incentives to TB patient - once after initial training, and every time a contact of theirs presents for evaluation at a participating clinic with a referral card

Roles & Responsibilities Participating Clinics Perform TB evaluations on contacts Notify the local health department Provide incentives to contacts Routinely follow-up with local health department Perform TB evaluations on contacts presenting with a TB referral card Notify the local health department within one working day; provide the contact’s demographics, locating information, TB evaluation and treatment results, the unique PID number of the referring TB patient, and the card number Provide incentives to contacts after completing a full TB evaluation at the clinic(s) designated on their referral card Routinely follow-up with local health department to provide updates on contacts’ results and follow-up care